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A Timeline for the Progression of my COPD….

Since I have started my blog many folks have asked me about the progression of my COPD, I have been asked; do you know what caused it, how long have I had COPD, when did it start or and how fast has it moved taking over my lungs.  None of those questions do I have definitive answers.  One of the easiest answers I do have is; my COPD didn’t start the day I was diagnosed. 

My COPD started a long time ago.  It may or may not have started with the first cigarette I smoked, or maybe the 1st time I came in contact with asbestos could have been the trigger, then again maybe it was that 1st bad cold or the 1st time I got bronchitis.  My doctor tells me I was predisposed to COPD, like others are predisposed to heart disease, cancer or kidney disease.  Even if I did everything right, lived in a bubble, exercised, ate correctly, and got plenty of rest I could/would have end up with the COPD. This post is about COPD because it is the disease of those I mentioned that I am the most familiar.

There are four stages of COPD; they are Mild, Moderate, Severe and Very Severe.   Very Severe COPD is now starting to be referred to as “End Stage” and I like term better than Very Severe.  This post is about how I have progressed thru the stages of COPD.  I will to talk about it in hindsight, trying to pick up the clues of the disease, recalling bouts of chronic bronchitis, how often I was sick, the duration of the bout, what did I did to prevent future bouts, I will also share what if any medications I can remember. Hopefully this will show folks how slowly COPD takes over your lungs.  Also I will describe circumstances that I feel are unique to me, which has expedited the disease thru my lungs. Which unfortunately for me has possible reduced my life span by as much as 10 to 15 years.

I suspect the reason that the COPD stages begin with MILD rather than some lesser descriptive word is that by the time you are diagnosed you are there, you’re not working your way towards COPD, you already have COPD. I began to suffer the leading edge signs of COPD about 30 years ago.  This was about the time that I started having issues with bronchitis.  During my mid 30’s I was having documented cases of bronchitis at least 2 times a year (where I actually when to a doctor and was prescribed medicine), in addition there were at least one or 2 more incidents a year that when undocumented (where I didn’t go to a doctor, or get medication, I just suffered thru it).  Back then I could get over a case of bronchitis in 4 or 5 days. The Zpak was the most common form of medication used back then. Maybe amoxicillin if memory serves.   

I was officially diagnosed with COPD ten or so years ago (around 2004). But please understand I had been suffering the symptoms and had been treated for chronic bronchitis for almost 20 years prior to the “official diagnoses.” The diagnoses came as a result of a breathing and sleep test, and at the time I was told I was in the Moderate (but tail end) stage of COPD.  All the benchmark signs were there long before I was diagnosed; getting winded with heavy exertion, colds that became the flu, which later became bronchitis. When I was diagnosed with COPD I had already stopped smoking for over 10 years, and while I got some of my wind back after I quit, it all never came back! But also, I was not in good shape, I was extremely overweight (and still am), my diet sucked, I did not have an exercise program, and my exercises really consisted of meeting the needs of family and doing family related chores (cutting grass, weed wacking, building flower boxes and the like). Being honest I just didn’t take care of myself.  Another indication that led to my diagnoses of COPD was a review of my medical history.  At this point I was having at least 2 serious bouts of bronchitis a year, I was given a Zpak, I was advised to nebulize Albuterol 2 or 3 times a day, as needed, I was prescribed a rescue inhaler, and I was also treated with Amoxicillin for 10 to 14 days.  I took all the pills as directed, but was extremely lax on using the nebulizer, and even more lax (if possible) with the rescue inhaler. Also the bouts of bronchitis were so bad that I was missing more and more time at work.

Two events happened over the next 4 years (2004-08) that rapidly moved me from Moderate to Severe and into Very Severe COPD.  In July of 2006 I had a Bi-lateral Pulmonary Embolism, amazingly I only missed a couple weeks of work, but it took months to regain my strength. Also I did notice a significant difference in my ability to breath.  Everything was more difficult, but it was still manageable and I was not on Oxygen 24/7.  The second event took place in March 2008, I had heart bypass surgery.  Two days after the surgery a hole developed in my left lung, right behind the heart. It was decided to see if the hole would heal itself (for 10 days), it didn’t, and about 14 days after heart surgery I was again on the operating table having the hole in my lung repaired. I am not going into all the details here, but I ended up spending over 100 days in the hospital, and came out of the hospital on oxygen 24/7/365 and in the END (Very Severe) stage of COPD.  Once I was well enough to take a breathing test it clearly showed how rapidly my disease had progressed, and that I was now in fact in the End Stage of COPD.  I do not for a moment believe this is the natural progression.  I believe that between the bi-lateral pulmonary embolism and the surgery on my left lung to repair the damaged lung greatly spend up my deterioration. The result was I sped thru the Moderate and Severe stages of COPD right to “End Stage.”  I truly believe that had I not suffered from the Pulmonary Embolism and the damage to my left lung that I would still be in, the (at worse) Severe stage of COPD.  It is my opinion that these 2 incidents move me closer by (at least) 10 or so years closer to the end of retirement.

Another factor which played heavily in the deterioration of my lungs is an immune system deficiency. My immune system was in such a state that the system’s ability to fight infectious diseases such as Pneumonia, MRSA and Pneumonitis, (treated with Zyvox, Colistimethate, Doxycycline, Cefepime, Meropenem, TOBI and Cipro, to name a few, those drugs with lines drawn thru them no longer have an impact on the Pneumonitis or MRSA which has colonized in my left lung) was compromised or entirely absent when discovered just 2 years ago. Doc Infectious (who was called in by Doc Lungs), ran a series of blood tests that shows my immune system barely functioned. When discovered it was determined that my system not been running at any level of efficiency for years. Allowing the COPD diseases to have a far greater impact on my lungs than someone whose immune system wasn’t compromised. Doc Infectious began treating this with a monthly (for the last 20 months) 5 hour IV treatment of Privigen.  My immune system now performs at the lowest level of normal, which I truly believe has played a significant role in my only having 2 hospital stays in the last 19 months.

All of this sounds very grim and to some it may sound crushing.  But I have lived with COPD for over 30 years, and I am not done yet.  Without complications such as; heart disease, the bi-lateral pulmonary embolism or the hole in my lung, I might not even be in the “End Stage” of COPD.  During my progression thru my disease I have learned that exercise is a tremendous help, eating correctly, managing your weight, communications, stopping smoking, doing your best to remove irritants from your environment, gathering support when and where you can, and most importantly maintaining a great attitude all will play a momentous part in your longevity.  Even if it doesn’t lengthen your stay, it will make your stay that much more pleasant for you and those you care for.

Folks this is my story, your story will be about you. This post talks about me, and it is but a snapshot, I realize I probably haven’t covered all I said I would, but like I said, it’s a snapshot.  How you deal with the disease is your business.  My blog shares how I have dealt with my COPD. Hopefully you don’t run into complications, maybe your COPD was caught at such a time and place where if you change some basic habits now, you will not only increase your stay, but your quality of life at the same time.  Right now there is no cure for COPD, but that would have been said for a lot of diseases over the years.  If you’re in the earliest stages, you have to imagine that the cure will be discovered during your life time. Smiling I have had COPD for over 30 years; I got COPD before it even had a name.  And even though I am in “End Stage” I haven’t given up, all I would ask is that you don’t give up either.

Folks as always if you have any specific questions you want to ask or if you have comments or concerns you want to share, please feel free.  Take care, Bill 

 

 

 
31 Comments

Posted by on July 31, 2014 in Observations, Ramblings

 

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How I Feel for the Week Ending 07.18.14…

Here in the Tampa area of Florida (where I live) we have had about 12 inches of rain since the beginning of the month.  Some parts of the area have only had 6 or 7 inches where others as much as 18 inches.  Trust me the normal water restrictions are not being applied.  But all that rain leaves a humidity trail behind it, and as any of my respiratory friends knows, that makes breathing that much more difficult.  I say this to continue to advise my non-respiratory friends of the perils that weather can cause, and likewise just how important air conditioning is to us.

My IVIG treatment was an adventure this week.  As most of you are aware I had a Mediport installed late last year.  Smiling, the concept behind this is one stick and you’re done.  The nurse can immediately begin a blood draw or start infusing medicines.  But lucky me, there has got to be an issue with the installation of my port.  Rarely is the port accessed on the first attempt, normally it takes 2 tries before success.  Well yesterday I was quite fortunate.  It took 4 attempts before the port was successfully accessed.  Each attempt was made by a different nurse, the last nurse to do so, was visiting the Infusion Center to install a Pic Line. As a matter of fact she had installed Pic Lines in me in the past, and she‘s a “pro.” She successfully accessed the port in about 15 seconds, after the area was “sanitized” for the 4th time.  This put the start of my infusion an hour behind, and it was time I never made up.  But the nurses were good to me, and to make up for having to stick me so many times gave me a Firehouse sub for lunch.  

I only have one medical appointment this coming week and that is with Doc Head.  I am sure that will be productive.

Last week I spoke of how my use of specific medicines was one of the gauges I use to determine how I feel for a given week. Another gauge I use is how much time it takes me to prepare for a day.  That being going thru all the motions one has to prepare for a day, showering, shaving, brushing teeth, getting dressed, you get the picture. I am beginning to notice subtle changes in the process.  I have to hold onto the grab bar in the shower for longer periods and more often, it is a little more difficult to shave because I do remove the supplemental oxygen when I shave, and I can’t just go from shaving to brushing teeth, I need to stop and gather myself before proceeding. Even putting on cloths requires a break to gather myself.  Smiling, advanced planning is mandatory, I am no longer as quick as I was.  These events speak volumes on the progression of the disease.  It begins as a glacier, but I am afraid the end will be like an avalanche.  This just another factor I use when I give myself a rating for the week.  Considering all the information I am going to rank myself as 2.5 for the week.  Of course this rating doesn’t include the normal aches and pains of everyday life.

So as a wrap up we are ranking the week an overall 2.5, but the attitude is still great, and I look forward to seeing the flowers from the right direction for some time.  So we can move on to the vital for the week ending 07.18.14

 

  • INR = 2.3 taken 06.30.14 – next test will be 07.28.14 – but no change in meds

  • O2 level @ 2.5 LPM = 95 taken 7.18.14

  • Peak Flow = 210 taken 7.18.14

  • BP = 106/66 taken 7.17.14

  • Heart rate = 98 taken 7.17.14

  • Temp = 98.5 taken 07.18.14

  • Weight = 267 taken 07.18.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.18.14, moving now to the word of the week discussion aspect. This week I have chosen the statement “how do I feel” as the word of the week. I haven’t even done a dictionary search for my phrase because I am wise enough to know it’s not there, so I will be speaking off the cuff today.

As some of you may remember I have spent a considerable amount of time pissing and moaning or bitching or just being obnoxious about, Doctors in particular and some nurses, asking me “how I feel.” I did most of this complaining when I was tied to a hospital bed.  I have even used the snappy response “You’re the one with the million dollar education, you tell me.” Folks I want you to know I have totally stopped that, I was wrong, gosh have I been wrong.  The doctors have a million tests that tell them how the body is, where it is broken, what is infected, how infected is it, is there more than one infection attacking the patient, has the patient more than one broken bone, and on and on and on.  All of these tests tell them, that this drug may work or that drug isn’t working.  It tells them how the bones in your body are mending. The x-rays, the blood tests, the stress tests, and all the other tests a patient is subjected to speak volumes to the health and maintenance of the body.  It helps them define courses of treatment, it helps to define what additional tests need to be given and results studied.  After they have explored all the different avenues it gives them a clear indication as to the direction they need to get to ensure your body is healthy.  But to my knowledge there isn’t a single test they can administer, that tells them “How do you feel.” And this my friends is the single most important question they can ask.  And my flippant response was not justified. Actually it was kinda mean-spirited.

 “Stupid is as stupid does”, from Forrest Gump pretty much sums up my former attitude.  Some may wonder what brought on this change of heart.  It really is quite simple I think.  Each week the Hospice nurse comes and takes my vitals, makes sure I don’t need any medicines, and does a general health assessment.  Part of that assessment is that simple question “How do I feel today?” or sometimes they ask “What do you miss today?” About 3 weeks ago I had a light bulb kinda moment. The light came on, it was so simple, all they are looking for is to see if my mental health is a good or bad as my physical health.  If I answer in a positive manner they get the input that my mental health was in a good place, it also could help them determine if their medical approach correct.  Also if my mental attitude is positive, even if my body is not responding to the medical treatment, it tells the doctors that while the treatment may need to be changed my attitude helps to keep me in the game.   Conversely if I tell them honestly that I feel like crap, and help them define why, they can immediately go back to the tests and begin the search, looking for that one thing they may have missed, or do they need to change medicines, or do I need counselling, or is it a combination of things that is needed.  That question and an honest response can make a significant difference in one’s treatment.  I truly believe that my attitude has played just as important role in my continued fight against my disease as the medicines I have been given (smiling maybe the medicines have a slight edge).  But attitude can make a significant difference.

All of this is being said so you don’t make the same dumbass remark I made.  I can’t stress how important it’s that you are completely honest with your doctor, giving him/her every opportunity to help you.  Even if you have a terminal disease it is still just as important, for as long as you’re trying, you give your doctor the opportunity make you as comfortable as possible for as long as possible. 

As always if you have any questions, concerns, or comments please feel free to bring them to my attention, I will answer as completely and honestly as possible. Please take care, Bill — ps no music was played during the creation of this document, I was busy watching the “Open” actually listening to it and watching replays of shots I missed.

 
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Posted by on July 18, 2014 in How I feel on a particular day

 

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How I Feel for the Week Ending 07.11.14…

It was nice to see that you’ll made it thru the 4th with little to no issues.  Some of your pets were stressed I am sure and I do hope they have recovered.  But now that should be the last of the significant fireworks until, until hopefully New Year’s.  Oh, by the way, it is Saturday July 12, 2014 and I am just starting my weekly report. So don’t be greatly surprised if you don’t see this until sometime early tomorrow afternoon.  Sidebar; we begin the day with Travis Tritt, “Anymore”.  The weather has been so so this week, the normal hot and humid weather we expect in Florida, but the sea breezes have been playing hell with us, and have screwed up the weather pattern, this week we have a lot of AM monster storms, with the evenings being clear and calm. Forecasters say things should normal out by this weekend. We will see!  The reason I mention the weather is because it has significant impact on how I feel during a given period. Heat and Humidity just eat my lunch and leave me quite weak.   But I am sure if I lived any of places I have lived in the pass the weather would have the same impact, so Florida isn’t the problem LOL.  

I saw Doc Head this past Monday, and as always I found that to be productive.  It doesn’t matter to me what we talk about, it helps and I like talking.  I only have one medical appointment this coming week and that is for my monthly IVIG treatment.

One of the many gauges I use to evaluate how I feel for a given week is the amount of specific drugs I use on an “as needed” basis.  Two of those drugs are Morphine Sulfate .25ML to be taken every 4 hours (as needed) and Alprazolam .5 MG table to be taken every 8 hours.  Both of these drugs are used to ease SOB and both of these drugs are quite effective and addictive.  It is my understanding (drilled into me by my Doctors) that at the dosage levels currently prescribed I have very very little to be concerned about.  Besides as explained (and these are my words) I don’t need to be concerned if I become addicted because end of retirement will arrive before any impact from a potential addiction becomes an issue. Having said all that, I have been extremely careful in my usage of these drugs, and there hasn’t been a day when I have used all the “as needed” dosages.  But for four days this week I have wanted to, and have reached for these medicines far more often than normal.  It is for this reason I am going to give myself a 2.5 for the week, it could’ve been lower.  As for an overall general health assessment, yes the SOB is wearing me out.  The harder it is to breathe the harder it is to do everything else.  I have all the aches and pains an out of shape 64-year-old would have,  so if I didn’t have COPD I really would have very little to complain about health wise.

On the bright side, if I were scoring the week of a combination of mental and physical health I would have given the week a 7 because of the emotional high I got this week, which by itself would have been a 10 on my 1 to 5 scale.  Were 1 equals “death sucking on a lifesaver”, and 5 being able to play golf without the assistance of supplemental oxygen. Sidebar; DL Hughley then Hendrix, followed by Garth Brooks, then CSN, Gretchen Wilson, AC/DC, then Nickelback, Ray Charles and now Aretha Franklin, followed by Marilyn Manson.  No wonder my head spins sometimes.  So as a wrap up we are ranking the week an overall 2.5, with a great mental attitude. So we can move on to the vital for the week ending 07.11.14

 

  • INR = 2.3 taken 06.30.14 – next test will be 07.28.14 – but no change in meds

  • O2 level @ 2.5 LPM = 93 taken 7.10.14

  • Peak Flow = 215 taken moments ago, 7.11.14

  • BP = 108/62 taken 7.10.14

  • Heart rate = 102 taken 7.10.14

  • Temp = 98.7 taken 07.10.14

  • Weight = 266 taken 07.10.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.11.14, moving now to the word of the week discussion aspect. This week I have chosen “COMMITMENT” as the word of the week. As I normally do I will start with the dictionary definition for the word.

http://www.merriam-webster.com/dictionary/commitment

Commitment Definition com·mit·ment  — Noun – a) promise to do or give something b) a promise to be loyal to someone or something c) the attitude of someone who works very hard to do or support something 

Go to the link above if you want or need a more complete definition of commitment.

I struggled all week looking for a word that I wanted to address, it came to me the moment my preacher spoke of it during church today and as it as it relates to being a Christian that our commitment to being Christians is not a 9 to 5 job. It was great sermon, her sermons generally are great. 

A little over 7 years ago I was “officially” diagnosed with COPD. (But please be assured that I had been working up to this official diagnoses for 20 years) I was already in the moderate stage and pushing against the severe stage real hard.  Doc Lungs told Steph and me that it is terminal, and there was no cure, and at best I had 3 to 5 years.  I don’t remember what we spoke about for the next 10 minutes, we left his office in silence, I am sure we both had that super stunned look. I know I moped around a bit, and 2 weeks later I was back in Doc Lungs office.  He sat with me and said “Bill, I will commit to you that I will do everything in my power to help you manage this, we will change your medicines as new “better” ones become available, and I will work with you every step of the way.  But this will only work if I get your commitment to fight this as best you can, if you don’t fight I can’t help.”  It was at that moment I made the commitment to fight my COPD with every tool at my disposal, that I would not wallow in self-pity, I would not bemoan my illness, and that I would be my own advocate, that I would enjoy the remainder of my life to the best to my ability.  Sidebar; we have been listening to Trace Atkins, Lewis Black, Montgomery Gentry, Aerosmith, SRV, more Nickelback, AC/DC, Cream, 3 Doors Down, Mountain, Rob Zombie and the Eagles during this session. Folks I have honored that commitment for 7 years, and I will continue to honor it. 

This blog is a direct result to that commitment and the fact that my wife just nagged my ass, again and again and again, until I finally gave in and said “FU…. It!” And I started writing with the goal to help and educate as many people as I could. I am not a quitter, (hell I couldn’t quit smoking, BUT I DID STOP), and in a little over 2 years I have written a 286 posts of which 114 are “How I Feel’s”.   I have reaffirmed my life for Christ, but I also have made the commitment to live as healthy as possible.  I exercise everyday even if it’s just pushing a shopping cart up and down the aisles at my local Publix, or ensuring the laundry is done, folded and put away. I watch my weight and it watches me, when my wife is home I cook and eat better, healthier meals.  I try to rest but sleep does elude me sometimes. I maintain a positive attitude, and I really don’t fret about the end of retirement.

That said we all have choices.  When we get devastating news that we or someone we love and cherish has a terminal disease, or one that has no cure, or both, or even if you’re as heathy as a horse. With that news comes choices, and you can choose to make the necessary commitments to make the most you can before the end of retirement.  You can make commitments to eat better, to exercise more, or to stop smoking.  You can make commitments to get your personal life in order.  To not burn bridges, and to try and mend those bridges that have been burnt.  You can commit to your Doctor, to pay attention to what he or she has to say, and do your best to follow his instructions, you can also commit to keeping your doctor informed of the changes you feel within, because as you live thru this you will usually notice changes in your daily health pattern long before a hospitalization is needed, if you’re aware and in communications with your doctor.  You may be ill, but you still need involved in your health.  These are commitments you can make to yourself, your family, your friends, and your doctor which can all have a positive impact in a negative world. Hell you can write a blog, it sure has helped me.

As always if you have any questions, concerns, or comments please feel free to bring them to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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How I Feel for the Week Ending 06.06.14…

Good morning folks, it is Friday around noon and I am in the middle of being stood up by the Maytag Repairman.  The original scheduled time was for between 8:30 and 9:30am, when 10am came and when I called the company and had the pleasure of chatting with a snotty receptionist who informed me I was wrong the appointment was scheduled for between 8am and Noon.  Well noon has come and gone, and rather than go ballistic, I thought I would start my weekly report which should be done and in your hands before SundayOn a musical note in the background we are listening to some Stonegarden, which I am sure well be just a few of the songs I report on today.  BTW I did see “A Million Ways to Die in the West,” I loved it; I would pay money to see it again to catch the parts I missed the 1st time thru. 

A fair evaluation of the week would be a solid 2.75.  The things that ail me continue to ail me.  SOB is an ass kicker, which I made worse yesterday standing over the grill cooking some great chicken, hotdogs and hamburgers.   The normal aspects of my life have changed little.  I am sure the progression of the disease continues no matter what I do, but if I stay out of the hospital or avoid an exacerbation, it doesn’t seem to progress as rapidly.  So for me it really is almost impossible to notice any significant decline from week to week.  I will go on to say that when the time comes that I can notice a significant change in my condition from week to week, that the end of retirement is just getting real close.  So be assured, I have noticed no real difference between last week and this week. 

Also last week I spoke of waking almost violently, and having to chill sometimes for as much as 30 or 40 minutes before trying to sleep again.  I spoke of how my wife dropped a dime on me to the Hospice, and that I was given additional bedtime medicine to help resolve that issue.  What I failed to disclose what that the medicine is.  So in an effort to maintain full disclosure I now take 0.25ml Morphine Sulfate orally at bedtime.  This has helped significantly, but has taken some getting used to.  The 1st couple days I took this medicine I felt like my butt was dragging all the next day.  Not so bad now. I had one doctor appointment this week, and that was with Doc Derm, I was given some lotion, and told to use twice a day, and some moisturizer, you know the drill. I am 64 played golf for over 40 years always drove with my left elbow out the window, after you abuse yourself you pay a price.  No fretting allowed!!!  There’s nothing going on here. The only other medical related item was picking up a new pair of glasses.  No hospice visit this week our schedules did not match up. Sidebar we have been listening to AC/DC, Eagles, Cream, Jimi Hendrix, Creed, Dixie Chicks, thru this portion of the report, sometimes I get caught up listening and not typing. This upcoming week I have appointments with Doc Head, and my 1st quarterly appointment with Hospice to determine if I remain eligible for Hospice care.

Just like last week, and it is still boring but my general health remains approximately the same from week to week. The coughing is about the same, tiredness seems normal this week; SOB seems no worse except when I was standing over the grill. 

Let get the vitals out-of-the-way for the week ending 06.06.14

  • INR = 2.3 taken 05.19.14 – next test most likely the will be 06.06.14

  • O2 level @ 2.5 LPM = 92 taken moments ago, and has been all over the place this last week, a couple of reading as high as 97, but several in the mid 80’s and one as low as 78 over the past week

  • Peak Flow = 275 taken moments ago, and that is as high as it’s been in weeks, generally I have a 225 – 240 range.  Must be a good day for sitting at my desk.

  • BP = 100/61 taken 05.29.14 – this was the last time BP was taken

  • Heart rate = 101 taken at this moment 101

  • Temp = 98.57 taken 06.05.14

  • Weight = 274 taken 06.06.14 – that was after the feast yesterday, I knew I had no business getting on that damn scale.

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.06.14, moving now to the word of the week discussion aspect. A very dear friend and someone I respect greatly did not buy in at all (or at least mostly not at all) on my discussion on acceptance.  She spoke to me briefly on denial, and why that worked for her.  So out of respect for her, I decided to speak of DENIAL for just a bit.  As always we will start with a definition of denial.  Our definition is taken from dictionary.com this week.

http://dictionary.reference.com/browse/denial

Denial – de·ni·al – noun 1. A refusal to agree or comply with a statement; contradiction. 2. The rejection of the truth of a proposition, doctrine, etc: a denial of God’s existence.  3. A negative reply; rejection of a request.  4. A refusal to acknowledge; renunciation; disavowal: a denial of one’s leader.  5. See also defense mechanism a psychological process by which painful truths are not admitted into an individual’s consciousness.  6. Abstinence; self-denial

The truth is a lot of folks are in denial. Some folks will stand on a stack of bibles and claim they aren’t ill, will claim their world is perfect, will assert that everything is 100 pct okay, and will do so right up to the very end. They hope thru their denial that it will in fact become reality.  Science, the preacher, the best friend, the spouse, and a teams of doctors and test results, can’t convince them of their situation.  Then at the end some have the “Oh, Shit!” moment. When the reality of their situation hits them dead in the face, some look back and some regret, others don’t, some second guess their choices and then show all manner of regret.  Still others try to cram months and years of preparation into days and weeks. Sometimes denial is done out of fear, that if you don’t accept it, it won’t happen.  I have a good friend who is in denial to a degree that I can’t imagine.  Her mom had breast cancer, and had a double mastectomy, and to date both of her sisters have also had breast cancer, and some level of surgery and other treatments, (all have survived so far) yet my friend (age 63) has never had a mammogram (or hadn’t as of 12 yrs ago).  The only reason I know this is that she admitted to me. At the time of the conversation she wasn’t planning on have a mammogram, for fear that she would find out like her sisters and mom that she also had cancer.  Folks, that’s denial to a degree I can’t even imagine. Please don’t take this route. Sidebar, this has been a good music day, I have just heard Stonegarden again, Eric Clapton, Trace Adkins, 3 Doors Down, Sarah McLachlan, Ronnie Rathers, Match Box 20, Savoy Brown, Rob Zombie, Ray Charles, and Dep Leppard.  Just for my Canadian friends not one song by Nickelback, Yet !

I have another friend who claims she is in denial.  But I think in my friend’s case she isn’t in denial at all (though she claims she is), I believe her to be beyond the acceptance level, and those she is surrounded by understand her plight, understand  her being sick, understand she doesn’t need reminders. She is at a point where she is enjoying life as completely as she can she just refuses to be bothered by the disease anymore.  Maybe that is denial, but she has the love and support of her spouse, and her kids. What more could she need? Why should she worry about something she can’t change?   Why does it need to be a discussion point? Yet she continues to remind herself by maintaining her active membership of the Daily Strength Discussion Group for COPD and Emphysema giving support to others that need it, sharing her strength, giving encouragement when and how she can, and she even shares a bit of her experiences with her disease.  She clearly does not demonstrate a classic case of denial.  She makes me proud, her strength, her character, her caring show that she isn’t denying a thing. She has been a giant supporter since my earliest days being part of the Daily Strength Discussion Group and we continue to share email and hugs on a regular basis.  If I ever slip into denial I truly hope I do so just has she has.

As always if you have any questions, concerns, or comments please feel free to bring to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

 

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It’s just another Chapter….. a Grandpa Tale

Last week in my weekly “How I Feel… (5.2.14)” post I announced that because of the advanced stage of my COPD, that I was now under the direct care of Hospice. As you know I have made no secret regarding my fight against COPD, reporting weekly on my current health. I have spoken at length regarding exacerbation and hospitalizations, the drugs that have been prescribed and the dosages. I have given every possible vital sign that I have had. All in the name of keeping folks informed. And that really is what this is all about. It has been my supreme hope that my words have given some folks a level of comfort. Through my honest “tell all” approach, I hoped I have in some way answered some of the many unasked questions. 

When I started this blog it was going to be my soapbox from which I preached about COPD, smiling I have done a pretty fair job of preaching and a lot of storytelling to boot. As I review what I have written over the last 2 years, the overall body of work is nothing more than a bunch of chapters about me. What started as a BLOG about COPD became a living autobiography of Bill Hamilton. None of the Chapters are in sequence and some chapters speak to a single incident, others to periods of years, many of the chapters speak specifically to and about COPD. But none the less each post is a chapter in my life.

Folks, my going into Hospice care isn’t by any means the final Chapter. But it will be a chapter that addresses some if not a lot of issues that folks with terminal diseases face at that stage of their life. In many ways I will most likely bore you to tears, and in some cases I will make you shed a tear. And trust me I will make you laugh your ass off from time to time. As I transition towards the “end of retirement” I will share the good and the bad, the stuff that makes me smile, and the things that make my ass burn. Damn I used the word ASS in two sentences in a row that is a new record. And if possible I would want your participation, if you had a specific question I can ask my care givers please feel free to do so, I will get you an answer as best I can. If I don’t explain something or you need additional information please feel free to ask. If you want to know my personal feeling about the treatment, costs, my attitude or whatever please ask. If you don’t want to make your question public email me dealingwithcopd@aol.com and I will respond directly back to you. This will be as much for you as it is for me. Most likely I will give my caregivers names (just as I have used Doc Head, Doc Infectious and Doc Lungs for the past year) so I can talk about them like the real people they are, and the process they are guiding me thru.

Please remember this isn’t my final Chapter, I have a long time to go. I have bunches of stories I need to share about my Daughter, my Granddaughter, my wife, myself and my life. Also trust me I am not going to focalize on Hospice each week. I figure my weekly “How I Feel’s” will pretty much remain the same because even in Hospice, Doc Lungs is still my primary Lung Doc, Doc Infectious is my primary infectious disease doctor, and Doc Head will still be my head doctor. I will still see them on a regular basis, and they will watch out over me when I am hospitalized. But Hospice will also be watching to ensure that just because I am terminal I am not overlooked. I suspect that my posts will be SSDD (same shit different day), they will be a mix of health related posts and Grandpa Tales. When it comes time for that final chapter to be written, it most likely won’t even be written by me. I have asked my daughter to post something, and I am sure at least one other person will write that final post for me. Heck, I may have something in the wings to share as a part of the final post. But remember that is a long way off.

Smiling, moving to a less morbid change of pace, if I every post that I have been kicked out of Hospice put on your dancing shoes and do your happy dance. LMAO being kicked out of Hospice is a treat, it means you’re not succumbing to your disease rapidly enough to require their services, and that folk’s is a good thing.

As always if you have any questions, concern, or thought you want to share please feel free. Take care and have a great day. Bill

 
21 Comments

Posted by on May 8, 2014 in Grandpa Stories, Observations, Ramblings

 

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How I am Feeling for the week ending 05.02.14….

For the week ending 05.02.14 this report will be coming from a more quiet place and time. The wife and I are now in a Hotel while the new flooring is installed in our home. But in packing some things were forgotten, including my IPod, so I am without music, and you are deprived a music list (I don’t know how I am going to be able to write). It has been hectic as hell this past week. The Brothers have gone back to Louisville, and my wife is back from her bucket list trip. The house is in full disarray, and I have this friggin tooth ache. Gee always something to look forward too. 

Health wise very little has changed, the coughing is about normal, tiredness about the same, I am breathing more times a minute than I should (I am taking more than 20 breathes a minute and the level of exertion is immaterial) , finally the issue will the tooth will be resolved this coming Tuesday. I did see the dentist after getting my brothers off for their flight Monday morning. After taking x-ray’s Doc Tooth decided it could be either an infection in the gums or the need for a root canal. We decided to give the antibiotics a chance to work, but after 4 full days of meds it was clear that the “potential infection” was more than “potential infection.” So I called and made the appointment with the extraction artist, for Tuesday morning 9am sharp. So I will be living on pain pills until Tuesday. And like any other time it is always wise to get ahead of the pain and stay there. For most of the week I have been using half doses of pain medication, and last night I realized I was being stupid and started taking the full dose, and have been since. Hell I should have just scheduled the extraction before I left the dentist office last Monday. But I am old and I am still making mistakes, but someday I will learn. Based on all I know about how I feel and the circumstances, I am going to give myself a 2.75 for the week.

Let get the vitals out-of-the-way for the week ending 05.02.14

  • INR = 2.1 taken 04/08/14 – next INR reading scheduled for 05.12.14

  • O2 level @ 2.5 LPM = 90 taken on 05.01.14 — several times this past week random checks have found my O2 level in the mid to low 80’s. The more activity the lower the reading.

  • Peak Flow = 225 taken 05.01.14

  • BP = 142/72 taken 05.01.14

  • Heart rate = 112 taken 05.01.14

  • Temp = 98.6 taken 05.01.14

  • Weight = 272. taken 04.30.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.02.14, moving now to the word of the week discussion aspect.  Just a couple of weeks ago I spoke of this word, I believe it deserves more time than I originally gave it, so back by popular demand (this is internal popular demand) is the word Hospice. The definition hasn’t changed a word in the 2 weeks since I originally posted my remarks. So I just did a copy and paste on the Hospice so that information. The source still comes to us via:

http://dictionary.reference.com/browse/hospice

hos·pice , noun – 1. House of shelter or rest for pilgrims, strangers, etc., especially one kept by a religious order. 2. Medicine/Medical a. health – care facility for the terminally ill that emphasizes pain control and emotional support for the patient and family, typically refraining from taking extraordinary measures to prolong life. b. a similar program of care and support for the terminally ill at home.

For those that have been following along on these “How I Feel … “ reports know, one of my chief concerns has been and is hospitalization. No matter what they do, as a sufferer of COPD once you go into the hospital or have an exacerbation of the COPD you never get the ground you lost back. Each trip to the hospital, each exacerbation is one more step down the ladder. But the problem with the ladder is that the distance between rungs is never the same. Sometimes you might lost .5 percent of lung function the next trip or exacerbation you may lost 2 or 3 percent of lung function. Also another major concern is the medicines available to treat the illness that took you to the hospital in the 1st place. As you are aware the more often you use a drug, the more your body and the disease being treated builds a tolerance to that medication and they are not as effective. Over my last few exacerbation and hospitalizations I have grown more and more aware of this lack of effectiveness. In early February, Doc Infectious told me he was running out of drugs to treat my COPD. In early March this was again confirmed by Doc Infectious, and Doc Lungs to his dismay supported Doc Infectious suspicions. But both are confident that under the best circumstances, they can mix and match a witch’s brew that will get me thru it. But it was suggested by Doc Infectious that I should consider going under Hospice care. Doc Lungs called me, and asked that I come in and see him before making or committing to this plan. The following day Steph and I visited with Doc Lungs, he much to his dismay agree with Doc Lungs, but he wanted me to understand this was not throwing in the White Flag. Further conversation confirmed he had no alternative drug therapy. There wasn’t a magic pill or mist to nebulize to make things better. Doc Lungs agreed with Doc Infectious assessment, that I have “a year or so.” Of course the key will be staying out of the hospital, and avoiding an exacerbation to the fullest extent possible. 

I know this is a long way to get to the point. I am now under the care of the local Hospice. I have been under their care since the early part of March. Over the next several months I will be talking at length about my Hospice experience. So far it has been extremely positive. I have been overwhelmed with the caring, concern, and compassion the Hospice folks I have encountered have displayed. Hospice is not a place someone just goes to, to give up and just die, it is so so much more than that. It is extremely supportive, and the benefits I have seen so far are outstanding for the patient and the patient’s family, friends, and others. Over the next few weeks and months I will provide a detailed report on the treatment program, the process, the ins and outs, and I will answer any specific question that is asked of me. I will be as forthright as possible. I do not find the prospect to be something to be feared, but something that will allow and give strength to the patient. 

As always if you have any questions, concerns, or comments please feel free to bring to my attention, I will answer as completely and honestly as possible.. Please take care, Bill

 

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How I Feel for the Week ending 3.21.14……

Well I hope all my Irish friends have long survived Monday the 17th.  Having a splash or so in my system, I quietly celebrated, and didn’t turn any shade of green.  Not being green made the week more pleasant LOL.  Today my excuse is that is that I just got a late start putting this together, and besides knowing that music will be involved. Today we are starting with a classic.  The very first time I heard 1st Vince Gill’s “Go Rest High on That Mountain” was at my Mother funeral, it made me cry that day and every time I hear it now I cry. And when my time comes this song will be featured at my funeral. I have included a link for your pleasure.   Because even songs that reach deeply into your soul can be a pleasure to hear and be touched by.   Sidebar — as much as I love Vince Gill I only have one other song of his on my IPOD, the other is A Satisfied Mind.  Now moving on to music provided by the Dixie Chicks, I am looking forward to “Not Ready to Make Nice!” it is probably one of the most heart-felt songs I have every heard.

http://www.vevo.com/watch/vince-gill/go-rest-high-on-that-mountain/USUV70500229

Last week I gave my health an overall rating of a 2.5.  When I was addressing that rating I said that it sneaking towards 2.75, well it is still sneaking towards 2.75 and if I can get any breathe back I will indeed move it to a solid 2.75, but as long as the SOB is the ruling body, the best I will rate a week is 2.5.  I have no other significant medical issues driving me.  I don’t have any aches or pains, no headaches; all systems seem to be working properly.  Though today I am beat, exhausted, sleeping with one eye open.  I was up until 2 am this morning, watching my beloved U of L barely beat Manhattan Univ in the first round of the NCAA Tournament, it’s a wonder I have any fingernails left.

In the past I have been quite willing to grade on a curve, and equally willing to change my internal scale to accommodate what the disease is doing to me.  I have decided to maintain the grading scale I had before my last hospitalization.  This is my reality, changing the scale each time I need to justify my changing health isn’t fair, and it doesn’t present an honest picture.  When I started my blog, its’ foundation was honesty, and to show how I progressed thru the illness. I have come to realize that changing the scale really isn’t the honest approach.  I suspect there will come a time in the future when a 2.5 week is a damn good week.  I might consider adding a Mental Scale, that reflects how my head is doing dealing with the disease, and other issues that I encounter as it regards to the disease.

This all came about because last week I made an off-hand remark that my brain adjusts much quicker to my disease than my body.  Folks’ there is a lot of truth to that statement.  Attitude is everything.  My attitude has carried the load, and has allowed me to press on.  Sidebar – moving on to Joe Cocker now, “I get by with a little help from my Friends.” Which folks you are, and your help does help (without the getting high part).  The fact remains for COPD or any other traumatic disease the patient’s attitude will do just as much towards their recovery or functionality as taking all the required medicines does for their body. 

Let get the vitals out of the way for the week ending 03/21/14

  • INR = 1.7 taken 02/17/14 – dosage increased to 6mg Coumadin daily

  • O2 level @ 2.5 LPM = 92/93 average O2 for the week

  • Peak Flow = 250 taken 3/20/14

  • BP 128/76 = taken 03/20/14

  • Heart rate = 108 taken 03/20/14

  • Temp = 98.7 taken 03/19/14

  • Weight = 272 taken 03/20/14 – damn it – looks like I ate the gift horse

So ends the general health aspect of my “How I Feel This Week” report for the week ending 3/21/14, moving now to the word of the week discussion aspect.

As we shift to the word of the week, I am still hanging with Joe Cocker, but I can say that George Thorogood is next to hit the imaginary turntable.  We are starting with the live version of “Johnny B. Goode”, and will listen to some “Bad to the Bone” (Terminator 2), then off to “I Drink Alone,” most likely followed by “One Bourbon, One Scotch, One Beer,” to we see a theme developing LOL. 

This week’s word is PEAK FLOW.  The book definition will be taken from Wikipedia.

http://en.wikipedia.org/wiki/Peak_flow_meter

The peak expiratory flow (PEF), also called peak expiratory flow rate (PEFR) is a person’s maximum speed of expiration, as measured with a peak flow meter, a small, hand-held device used to monitor a person’s ability to breathe out air. It measures the airflow through the bronchi and thus the degree of obstruction in the airways.

Function — Peak flow readings are higher when patients are well, and lower when the airways are constricted. From changes in recorded values, patients and doctors may determine lung functionality, severity of asthma symptoms, and treatment options.

First measure of precaution would be to check patient for signs and symptoms of asthmatic hypervolemia. This would indicate whether or not to even continue with the Peak Flow Meter procedure. Measurement of PEFR requires training to correctly use a meter and the normal expected value depends on a patient’s sex, age and height. It is classically reduced in obstructive lung disorders such as asthma.

Due to the wide range of ‘normal’ values and high degree of variability, peak flow is not the recommended test to identify asthma. However, it can be useful in some circumstances.

A small portion of people with asthma may benefit from regular peak flow monitoring. When monitoring is recommended, it is usually done in addition to reviewing asthma symptoms and frequency of reliever medication use.

When peak flow is being monitored regularly, the results may be recorded on a peak flow chart.

It is important to use the same peak flow meter every time.

Folks, this ends the technical aspects of the PEAK FLOW meter and measures. This was taken completely from of Wikipedia, but a quick search of PEAK FLOW on line will net you dozen’s inputs and you can feast upon them.  I chose this word this because the Peak Flow Meter is just one of the tools I use to monitor my health.   I am not saying run out and get one, I am suggesting that you talk to your doctor and see if this is a tool t that you should use in monitoring your health.  And as you’re well aware I am an advocate of you being involved in your health, the decisions, and the directions to be taken.  Of course you are consulting your Doctor at each stage of the way, but being aware of the things going on in your body are very helpful.

When I talk to Doc Lungs, I can say on this day my PEF was such and such, and on this day it was so and so.  I have even come to stating the conditions (weather or inside climate, pollen, things like that) if I find it particular high compared to my baseline.  LOL I don’t even know if Doc Lungs cares but he sure acts like he does.  Sidebar, I now have Jeff Beck with Rod Steward playing “Shapes of Things.” 

Smiling, it takes so much time to write this because of all the breaks I take to play air guitar, and sing along.  Lord so I sing terribly LOL, but I am home alone and no one can hear.  I will bring this to an end with Jim Hendrix’s “(I’m Your) Hoochie Coochie Man” 

If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 
 

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How I Feel for the Week ending 3.14.14……

Folks I hope you have had a pleasant week, mine has been okay, actually fairly good.  I have all manner of stuff going on today, so I expect this well be done sometime in the late afternoon.  As I have been prone to do recently, making a musical out of my posts, there will be a multitude of songs I will be referencing as I write this.  Our 1st selection comes from The Byrds, with Roger McGuinn, (for the uninformed) he was the frontman for the Byrds (I am such a music snob sometimes LOL).  I have listened to 3 selections including Mr. Tambourine Man and Turn, Turn, Turn.  But I will soon be listening to his solo album “Back from Rio” with King of the Hill, and Someone to Love both I consider to be his best work.  I will say this for Roger, he doesn’t waste a lot of time writing happy songs, LOL.  Below is the link for King of the Hill. Enjoy!  BTW that is Tom Petty singing backup.

http://www.youtube.com/watch?v=Jr1ozA6GeRs&list=AL94UKMTqg-9DT-_bHVz2kWurO6uOHuHpx

Last week I gave my health and overall feeling a 2.5 rating.  I am sticking with that score for this week.  While I feel marginally better, I don’t know if it is my head or my body that is taking the credit for that upward push.  Each day I seem to be redefining, what SOB (shortness of breath) means.  I have been diagnosed and dealing with COPD for going on 6+ years now.  As I have said countless times, it is not a disease where you look sick, but you really are.  SOB is one of the very few visible indications of the illness.  Right now if you were to watch me do just about anything sedentary, you would never have a clue I was sick.  Sometimes even that is a blessing.  But if you were the fly on the wall and followed my movements about the house as I do my Domestic King administrations, you would see the very real impact of COPD.  Seeing me stop to grasp onto a table or counter, stopping short of completing any tasks without multiple small breaks, or stretching my neck to catch a breath, are all the indicators you need. It FU…king sucks. My appetite is off a bit, which would account for a bit of my recent weight lost. There have been no changes to my current medicines and my only medical appointments for next week are with Doc Lungs, and my monthly IVIG treatment.  Other news includes that the gut retching cough seems to have to an end, with now only a simple cough, which is non-productive.

Let get the vitals out-of-the-way for the week ending 03/14/14

  • INR = 2.6 taken 02/24/14
  • O2 level @ 2.5 LPM = 93/94 average O2 for the week
  • BP 118/64 = taken 03/12/14
  • Heart rate = 102 taken 03/13/14
  • Temp = 98.4 taken 03/14/14
  • Weight = 269 taken 03/11/14 – I am eating less, and that’s the lowest it’s been for quite some time, I’m not looking a gift horse in the mouth.

So ends the technical aspect of my “How I Feel This Week” report moving now to the word of the week discussion aspect.  I have listened to a variety of songs by the Byrds, Roger Mcguinn, The Nashville Teens, and Zombies clearly it has been OLD SCHOOL today. 

As we shift to the word or phrase of the week, my music selections have change as well.  I am in a particular mood right now, so it seems a few selections from Rob Zombie seem appropriate. This week’s word or phrase is Documents and Documentation.  The reason for these words is quite simple, you need to cross the “T”s and dot your “I”s.  This advice isn’t just for the terminally ill, it isn’t even for the sick, it’s for each and every one of us.

As I have been told a million times you never know when your end is coming.  To protect yourself and those you love, you need to take care of the paper work.  So with that said, I will provide the book definitions for Document and Documentation, and then offer my 7 cents (up because of inflation).

Our definition of Document is brought to us courtesy of Yahoo at dictionary search yahoo.com

https://search.yahoo.com/search;_ylt=AkydiHiX_sDa7BSky2P2TxGbvZx4?fr=yfp-t-901-s&toggle=1&cop=mss&ei=UTF-8&p=document%20definition

Document Definition — n. noun – 1. A written or printed paper that bears the original, official, or legal form of something and can be used to furnish decisive evidence or information.  – 2. Something, such as a recording or a photograph, that can be used to furnish evidence or information. – 3. A writing that contains information.

Document Definition – tr. verb – 1. To furnish with a document or documents. –2. To support (an assertion or claim, for example) with evidence or decisive information. – 3. To support (statements in a book, for example) with written references or citations; annotate

Documentation Definition – n. noun – 1.  The act or an instance of the supplying of documents or supporting references or records. – 2. The documents or references so supplied. — 3. The collation, synopsizing, and coding of printed material for future reference.

I truly hope that me adding these book definitions to the words I choose to talk about is not overly offensive, I realize you’ll are very very smart, probably  smarter than me, but writing them out allows me to focus and not stray from my objective.  So if I have offended you, please understand it is more for me than you.

I am going to list the base line documents that I have signed, sealed and stored in a place that is easy to access in the case of an emergency.  Ease of access is really my key point in this.  You, your loved one, your spouse, significant other, your kids, care giver, and any other individual that is important to you must know where these documents are, and they need to be easy to access.  It does no one a lick of a bit good, if you are the only one that knows what documents you have, and that you buried them under a rock in the backyard.    — This has spilled into Saturday so now I am a day late and a buck short, but it will soon be wrapped up. — Music selections start today with selections brought to you by Melissa Etheridge, off her “Greatest Hits! The Road Less Traveled” she is another artist I am extremely fond of, and her rendition of Refugee ranks up in my TOP 100 favorite songs.

I have a 3 ring binder in my office that lists each document and in many cases the original of the document.  In the case of an emergency you just walk into the office and grab the “Bill’s Emergency Documents & Stuff” book (btw—this is a living document and as information changes so I make the appropriate changes to the book — you would need to get into this habit as well).  This book contains the following documents: A copy of my will, my DNR (Do Not Resuscitate Order) for the State of Florida, my OPM (Ofc of Personal Management) retirement handbook (which provides the needed instructions on who to contact and when to contact them after my death), my durable Power of Attorney, cover page and POC (point of contract) for each life insurance policy I have.  The list of documents also contains my personal account information for my ITunes and Barnes and Noble accounts. It also contains a list of my signons and passwords for the digital world I live in.  It also tells my wife which are important to me (or her) and why at the end of my retirement.   As I said this is a living document and changes and additions will be made as needed and as I get closer.  This is not meant to be an all-inclusive list; your list of documents will be slightly different.  Also if you’re reading this and you think I missed something please send me a note.

Before we get into Documentation, the music has move to Peter Gabriel, with a couple short stops with Phil Collins, Travis Tritt, Nickelback (surprise) and Muddy Waters.   It is incumbent upon you to leave behind all the useful documents that run your household.  Names and telephone numbers for the various vendors you use such as; telephone company, Cable provide, the handyman, lawn care provider, and on and on, you get the point.  If you’re anal retentive like me, you have all the warranties for the things around the house; stove, TV’s, ceiling fans, wine cooler, and on and on, again you see the trend. You’re other half has come to depend upon you over the years to have that information available, for the most part they don’t even have a clue, so setting it aside in some neat container will make their life much easier.  This folks is not repeat not gender specific.  Each individual in a relationship collects, maintains, updates, and disposes of household information on a regular basis.  One of them may do 99 percent of the family finances with the other pretty much clueless.  So when you start to gather your documentation remember this, and package in a neat and orderly way to help your other through what will be a difficult time.  I just spoke to finances; it would make things a ton easier if there were a whole separate binder just on checking, saving, investments, and all other money matters.  If the bulk of your banking is done electronically, and you’re doing 99 pct (like my wife does) detailed instructions should be provided so your partner doesn’t have issues getting into the accounts after your gone.

Again this week I have managed go on and on.  So with Garth Brooks filling my headset, I will bring this to an end.  If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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How I Feel for the Week ending 3.07.14……

I am beginning this weeks’ report at 1pm and I know I will have a ton of interruptions between now and when I finish, so I can’t nor will I say this will be complete by COB today.  Music will be brought to you today courtesy of Nickelback, truly one of my go to bands. Because of the known numerous breaks I will have today, the music selections and bands will be changing of course I will keep you updated. BTW I have 44 Nickelback songs on my IPOD, so I doubt if I run out.

Last week after I hymned and hulled I gave the week a 2.5.  I feel that is still an appropriate rating for this week so for those keeping score this week is a 2.5.  There has been no significant forward movement, and rather than just change the scale, I will keep the rating. The coughing has all but stopped with just time a day were it is a major factor and when I cough it is not productive. As ugly and nasty as it sounds the best cough for a person with COPD is a gut retching deep nasty cough that is super productive.  Smiling when I cough like that I am bragging not complaining.  Last week I complained about barely holding my own.  Even with such little progress I am managing to hold my own.

Let get the vitals out-of-the-way for the week ending 03/07/14

INR = 2.6 taken 02/24/14 — next check 3/17/14

O2 level @ 2.5 LPM = 92/93 taken numerous times this week

BP 122/74 = taken 03/05/14

Heart rate = 99 taken 03/05/14

Temp = 97.6 taken 03/05/14

Weight = 272 taken 03/07/14 – that’s 2 lbs less than last week HOORAY

There has been only a slight change in my medicines.  I am no longer using Cefepime via IV so the Mediport has been cleaned and is now back in standby mode. -–interruption 1 —  Still working Nickelback.  LMAO I wonder what the guys in Nickelback think should they hear that one of their biggest fans is a 64 year old fart.  Who really listens to and loves the lyrics.

This week I had appointments with both Doc Infectious and Doc Lungs.  It seems that whatever bug I have that is currently managing to crap in my lungs is now at bay, at least for the time being.  The normal cracklings, gurgling, and other unique noises my lungs make aren’t nearly so bad this week. The extremely shortness of breath is being attributed to the worsening of my COPD, (brought on by the last exacerbation) and this is expected.  It is really part of the process of being ill. Do I like it when my doctors concur that the disease is winning, of course not, but folks it is what it is. And again the process mandates this is to be expected. Sidebar note, if you get a chance listen (closely) to Nickelback’s “Kiss it Goodbye.” Additional sidebar, maybe bragging about liking this song in this part of my report was inappropriate, but’s a great song that happens to be playing now. Both Doc Lungs and Doc Infectious are realistic men, their staffs are realistic, but most importantly they have my best interests at heart.  We are staying the course they feel is in my best interests.  But with any condition or disease you must be prepared for changes in condition and direction.  That’s a long way of saying I was expecting the SOB to get worst, and I am somewhat prepared.

So ends the technical aspect of my “How I Feel This Week” report moving now to the word of the week discussion aspect.  I have gone thru about 15 Nickelback songs in a row, many I have heard dozens of time, and I am still enjoying it, but as we move into the word or phrase of the week phase of my report, I believe I will listen to Jimi Hendrix for a bit.

The word I have chosen for this week is “Support.”  As with last week the definition is being taken from the Merriam-Webster.com Dictionary.  I will be providing an edited version of the word, but you can go to the link below to get the “complete” definition.

As defined at http://www.merriam-webster.com/dictionary/support

1 sup·port  transitive verb \sə-ˈpȯrt\ : to agree with or approve of (someone or something),  to show that you approve of (someone or something) by doing something,  to give help or assistance to (someone or something)

Full Definition of SUPPORT— 1:  to endure bravely or quietly : 2a (1) :  to promote the interests or cause of (2) :  to uphold or defend as valid or right :  advocate <supports fair play> (3) :  to argue or vote for <supported the motion to lower taxes> b (1) :  assist, help <bombers supported the ground troops> (2) :  to act with (a star actor) (3) :  to bid in bridge so as to show support for c :  to provide with substantiation :  corroborate <support an alibi> 3 a :  to pay the costs of :  maintain <support a family>  b :  to provide a basis for the existence or subsistence of <the island could probably support three — A. B. C. Whipple> <support a habit> 4 a :  to hold up or serve as a foundation or prop for b :  to maintain (a price) at a desired level by purchases or loans; also :  to maintain the price of by purchases or loans 5:  to keep from fainting, yielding, or losing courage :  comfort 6 :  to keep (something) going

2 support  noun : the act of showing that you believe that someone or something is good or acceptable : approval of someone or something : the act of helping someone by giving love, encouragement, etc. : help that is given in the form of money or other valuable things

Full Definition of SUPPORT  1a :  the act or process of supporting :  the condition of being supported b :  assistance provided by a company to users of its products <customer support> 2 :  one that supports —often used attributively support staff> 3 :  sufficient strength in a suit bid by one’s partner in bridge to justify raising the suit.

Buckets Loads
Bucket Loads

I got this card in the mail this afternoon, isn’t surprising the timing of things.  I was writing about support, and guess what, I got a bucket load.  I have no idea who Liam is, but I can’t thank him enough.  It proves you never know when or how support will find you.

It is now 730am on the morning of March 8th, so clearly I didn’t make the self-imposed COB deadline, though I did listen to some Hendrix last night.  I have been thru my morning meds process, I have nebulized the stuff that makes my beard sticky and glues my eye lashes together, so thru squinty eyes I am working to complete this post.  I have chores today, and I must watch the UofL vs UConn basketball game at 2pm EST.  I am just saying this may end up a weekend report. Imagine all the extra music you will hear me talk about.  To fire my butt up, and to really get my motor running we are starting the day with some AC/DC.

Folks isn’t support a wonderful word.  It is far reaching, and has thousands of applications, it can be big or little, it can be a word or a million bucks.  Support will allow itself to be what you YOU, need it to be.  Support can come from millions of directions, some expected some totally unexpected.   But as wonderful as it is, one of the most difficult aspects of support is realizing when YOU need it.  And friends don’t be offended with me saying YOU, when we know I really mean ME.  But it does also apply to YOU as well.

Support will be one of the key cornerstones on how we progress through our illness.  It will come in stages, and you will find it in many places. It will not be a bad thing to knowledge that you need some support.  You will see support in many ways; spiritual, physical, that quiet moment, the guiding hand, a smile or look even direction.  It will come from people you know and trust, to complete strangers and all points in between. As your disease progresses you will find the smile you get from the nurses aid to be a bit more genuine, their touch a little softer, you’re doctor or team of doctors will  be there for you, clearly with your best interest at heart.  At your pharmacy, the pharmacist’s smile is a touch warmer and maybe the service a touch faster.  The clerk at the grocery store will unload your basket with a genuine smile on their face. Unexpected people will open doors for you. The neighbor will drag your trash bin back to your garage and not even take credit. And this takes place in the beginning, and will grow from there.  For the longest of times I have tried to man up and do it all myself, standing my ground refusing any and all support and help.  But folks as it gets more difficult you can’t do it all yourself.  And as I have done you will find graceful ways to accept the support you get.  I also suspect the further the disease progresses the more willing and graceful I will be in accepting both support and help.  I write this to suggest that you think about this as well.  The folks offering their support and help are doing because they care, it is not being done out of pity.  Try to remember that.   Yes sometimes it will be too much, but trust me there will be a time when it isn’t.

I have managed go on and on.  So with Genesis playing strongly in the background I will bring this to an end.  If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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How I Feel for the Week ending 2.28.14……

How I Feel for the Week ending 2.28.14……

I am beginning this weeks’ report at 6:07am, so hopefully I will get it complete and out to you by COB (close of business).  In keeping with recent trends on my part, the jukebox is fired up, and we are starting with some old school Buddy Guy.  Because I know I will be doing this in spurts throughout the day I will provide musical updates as well.

Last week I rated the week a 2.25 and I said that was a weak 2.25, this week it has hovered between 2.25 and 2.50. The reality is that I have been making very little progress, and just barely holding my own.  Well there was a reason for that.  It has been determined that the medicine regiment prescribed for me upon discharge from the hospital has not been effective against the infections in my lungs.  In fact the prescribed medicines have had no impact on the infections in my lungs post hospitalization.  On the 19th a new sputum test and blood work done.  Results of these tests (02/24/14) showed that the Merrem IV and TOBI were having no impact, and different medicines were ordered (Cefepime via IV and Colistimethate via nebulizer) to fight the infections.  It was determined on the 25th that I was stable enough to not required hospitalization at this time, but I was to be monitored and re-evaluated on March 3rd.  I have been instructed to “rest and take it easy,” can I tell you what a PIA (pain in ass) that is, I do rest and relax quite poorly. But having said all of this, I am going to rate the week 2.5 because I feel I am beginning an upward trend.

Having stopped to do a couple of chores we have moved on musically to Brooks and Dunn.

Let get the vitals out of the way for the week ending 02/28/14

INR = 2.6 taken 02/24/14

O2 level @ 2.5 LPM = 94 taken on 02/25/14

BP 112/60 = taken 02/25/14

Heart rate = 101 taken 02/25/14

Temp = 97.8 taken 02/25/14

Weight = 274 taken to often

This week I had appointments with the big three (Doc Head, Doc Lungs, and Doc Infectious).  The appointment with Doc Head was good as always, she has a way of drawing me out when I need to be drawn, and sitting quietly when my mouth and brain are in overdrive.  The appointment with Doc Lungs was not overly productive, we rehashed the finding of Doc Infectious, and I got his concurrence on the path Doc Infectious was going.  Then I had my appointment with Doc Infectious, where we talked about what happened post hospitalization, and what were the future options for drug therapy. It was explained that there are fewer and fewer drug   options available, and that with each future infection, it will take a jumbling of medicines, to pinpoint the ones that will be effective against whatever strait of the infection I am currently fighting.  It was an awareness conversation.  One I appreciated, and one that needed to be had.  Notice I didn’t say it was a fun conversation.

As I had reported last week I was and still am having significant issues with the SOB (shortness of breath), and an overall lack of energy and desire to do anything (all the symptoms that put me in the hospital originally) I have managed to play cards a couple of times a week and I have been kicking Art’s butt, which is a good sign on hundreds of different levels.

So ends the technical aspect of my “How I Feel This Week” report moving now to the word of the week discussion aspect.  I have grown tired of Brooks and Dunn (after 11 songs) and have moved on to Cheap Trick.

Cheap Trick only lasted about 6 songs, and I have moved deeper into the “Blues” with the Queen herself Aretha Franklin.

This week I want to speak of self-advocate.  Something each of us needs to be. This week definition is taken from the online version of The Merriam-Webster online dictionary. And can be seen in its’ entirety at:

http://www.merriam-webster.com/dictionary/advocate

Ad-vo-cate – Noun

Full Definition of ADVOCATE: 1 — one that pleads the cause of another; specifically:  one that pleads the cause of another before a tribunal or judicial court, 2 — one that defends or maintains a cause or proposal, 3 — one that supports or promotes the interests of another.

Examples of ADVOCATE : 1 — a passionate advocate of civil rights, 2 — She works as a consumer advocate. 3 — He has paid respectful attention to the home schooling movement by meeting with its advocates and endorsing their cause. —Elizabeth Drew, New York Review of Books, 10 June 2004

First Known Use: 14th century

The key to this definition is the fact that I have added SELF to the word Advocate, meaning you have to stand up for yourself.  You are the single most important aspect of your health, you know your body, you know how you feel, and you know the different aspects of yourself.  If you have suffered from this disease long at all you know how you’re doing, you know when you having a bad day, you know the signs and symptoms leading up to an exacerbation of you COPD, and this awareness will help you as much as any doctor you have on your team.  Your doctor depends on you to tell him or her, what is working what isn’t working and how you really feel.  If you have an appointment and you tell the Doctor you are feeling fine when in reality you feel like shit.  Your doctor will treat you as if you’re feeling fine. If you tell him you feel like shit, then your doctor has a different set of values to work from. You must tell him, you must be able to say to you Doctor I don’t believe the drugs or therapy is working, you have to sit or stand for yourself.  I am sure 99.9 percent of you have more polish than I do, and you can use that polish to your advantage.  To have as long and productive life as possible with this disease you must be your own advocate.  If by some chance you haven’t figured out what leads you to an exacerbation of your COPD, you need to start learning these things so you can be your own advocate.  And as you learn you need to share this with your significant other, so they can see the signs when you choose to ignore them (which I have been known to do).  Again the key is to be your own advocate.  To know what is going on in your body, and to be able to communicate that to the people who need to know.  So when the doctor asks you “How you doin?” you can say something other than “fine” If you’re not feeling fine. Folks I am not saying being a self-advocate is easy, in reality it is extremely difficult. But I am saying start, work on it bit by bit, build your confidence, and trust yourself.  As you build confidence, you become more aware of yourself and you will find it easier and easier to be a self-advocate.  Some will take to it easier than others, and some won’t take to it at all.  Again the key is to try, to be there for yourself.  The doctor doesn’t want to hear fine if you’re not feeling well, he really wants to know, but unless you look like death sucking on a lifesavor, he will have to believe what you tell him.

I was discharged from the hospital on February 11, 2014.  I was sent home with a prescribed list of drugs to use, with specific intervals, for a specific duration.  My 1st follow up with Doc Infectious was on February 19th, at which time I advised him that I was still feeling poorly, and in fact that I felt I had made no improvement since being discharged.  I cited several reasons why I felt, if anything like I was back sliding.  Doc Infectious countered with the fact that normally it takes 3 or more weeks post hospitalization before I am “right” and that patience was needed to allow the medicines to do their magic.  I was persistent, even a PIA, and told Doc Infectious that yes he was right historically speaking, but normally after being on a drug protocol for a week post hospitalization, I had some feeling of being better, I didn’t that day!  It was thru my being a self-advocate that Doc Infectious said okay, lets’ do another sputum test and some more blood work and see where we are.  It was those sputum and blood tests results that showed that the drug regiment I was under was not effective, those results were why my drug regiment was changed mid-stream, and this all happened because I was a self-advocate.

Folks, I don’t claim to know it all, but I have been suffering from COPD long enough to get a feeling for my body, to know the signs.  I have done some reading, and a bit of studying.  And I have a big mouth, and I can be a PIA.  You don’t need a big mouth or to be a PIA, but you need to know you, from there you have knowledge, and knowledge is never a bad thing.  This is just something I feel you need to give serious thought as I have done.

I have completed my report with musical selections from Eric Clapton’s Crossroads and other tunes from the Cream days.  I hope you have a pleasant day.

If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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How I Feel for the Week ending 02.21.14……

I hope everyone is okay today and this week.  The jukebox is open and today’s post will be brought to you courtesy of Match Box 20.  The week has been non-productive in so many ways.  I have made no significant progress, the coughing which is semi-constant is productive, and 2 times a day I seem to reach into the depths of my lungs to find that truly gross shit and I have a massive coughing attack which brings most it up.  This a good thing, but I would have hoped the coughing would have eased up a bit, but more importantly, I would have hoped that with all the drugs I have had these last 3 weeks that the product would be less offensive.  I am having headaches that I don’t normally have and extra strength Tylenol is not effective.  The SOB (shortness of breath) is kicking my butt, and being honest I am embarrassed by how hard it has hit me.  I did follow-up with Doc Infectious on Tuesday when I had my monthly IVIG treatment.  We talked and I got to spit in the cup again, and we added another antibiotic (Zyvox 600mg 2x) to the mix.  While holding steady with the Merrem IV and the TOBI (nebulized).

For all the reasons stated above I am going to give this past week a 2.25, and that is a stretch.  While I seem to see slight improvements, for every positive I’ve seen, I am finding 1.5 or 2 negative ones.  This coming week I see Doc Head and Doc Lungs on Monday and on Tuesday I see Doc Infectious. This brings us to this week’s word, Patience which I will get to in a moment.

Let get the vitals out of the week ending 02/21/14

NR = 3.5 taken 02/19/14 – outside of therapeutic — my medications have been adjusted to get this number down below 3.0

O2 level = 93 taken on 02/21/14

BP 114/62 = taken 02/19/14

Heart rate = 94 taken 02/21/14

Temp = 97.1 taken 02/19/14

Weight = 264 taken in hospital before discharge 02/11/14 — I have looked at the scale in the bathroom several times since last week and it repeatedly says “Stay the F…. off me for the time being!” I am heeding this advice.  While I don’t think I have gained much (my appetite has sucked), so I am eating because it is required not for enjoyment. 

So ends the technical aspect of my “How I Feel This Week” report moving now to the emotional discussion aspect.  BTW I have listened to 12 Match Box 20 songs getting to this point.  Rob Thomas has one hell of a voice.  I am just saying.   Moving now to SRV (for the uninformed Stevie Ray Vaughan) I have only about every song he has recorded LOL.

So as I stated earlier today’s word is “Patience.” Over the years I have heard many phrases regarding “Patience” such as; the patience of a saint, or Patience is the greatest of all virtues, A handful of patience is worth more than a bushel of brains, and Patience is the companion of wisdom, to name a few.  Whenever someone approaches me to explain why there is a minor or significant delay, I ask if I look impatience, and if I do to forgive me because I have patience.  And as I have aged I truly believed I had developed a level of patience I never had as a child, kid, teenager, young adult, and even early adult. In review I can’t even count the times I have shown true patience.  In reviewing the definition of Patience as provided I truly believe that 1, 2 and 3 clearly had me in mind when this dictionary was written. 

Patience As defined by Dictionary.com.

Pa-tience – Noun

1. the quality of being patient, as the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like.

2. an ability or willingness to suppress restlessness or annoyance when confronted with delay: to have patience with a slow learner.

3. quiet, steady perseverance; even-tempered care; diligence: to work with patience.

4. (Cards chiefly British ) solitaire (  def 1 ) .

5. Also called patience dock. a European dock, Rumex patientia,  of the buckwheat family, whose leaves are often used as a vegetable.

http://dictionary.reference.com/browse/patience

Setting the stage in this manner; CLEARLY I DON’T KNOW MY ASS FROM LEFT FIELD about Patience. LOL LOL.   I was in the hospital for 9 days suffering a serious exacerbation of my COPD.  Throughout my hospital stay I was given an extensive array of drugs and breathing treatments, all in hopes of getting me better.  After 9 days I was sent home with a continuation of the drug therapy, told to rest, take it easy, and to not rush things.  I don’t think in fairness I listened to a friggin word.  COPD is complicated no exacerbation is like the one before or the one after.  Each has its’ own regiment of drugs and treatment, and for these to work it takes PATIENCE !!!  Why in the world I can’t get this thru my thick head is beyond me.  I get up on my soap box and preach and preach, and sometimes I don’t bother to listen to my own words. Hell last week I said, and I quote “I know that I am still in the recovery mode, and that it will take a couple of weeks to get back to wherever I am going to get back.”   So having been V8 slapped in the head today, I realized I need to chill, relax, take it easy and let the medicines do their job.  I can’t hurry it, bitching about won’t get me better sooner, I have to let nature and trust my Doctors to do right by me.  I share this with you to remind you that when your ill, you to have to have patience, you as well need to listen your doctors, you need to take all your medicines, and follows instructions. Just as I have to. I know it is easy to preach about because I have, now I am going to sit in the front row and follow my own instructions.  Please, the next time you are sick please try to remember this post, it may save you a ton of headaches and anxiety, maybe more.

If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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A COPD Video — A good death

As you know my blog is about COPD a disease I suffer from.  Some of those that follow or read my blog from time to time also suffer from the disease or they may know or love someone who does.  This video is for all of us.

I have never made the disease out to be pleasant, I haven’t highlighted any good points because there aren’t any, but I rarely take a negative position.  This is a much watch video.  It isn’t gross, but it isn’t pleasant either. This is 100 percent about reality.

One of the individual’s in the Daily Strength Discussion Group to which I am an active member shared this video.  It is touching, it is moving, and it is in the future for many myself included. It makes some very strong points, and it is something that needs to be shared, talked about, and thought about.

It will take 30 minutes of your time, but it will be a very worthwhile video.  Please consider it.

http://vimeo.com/39258619

As always if you have any questions, thoughts, concerns or comments please feel to ask me.  Please take care, Bill

 

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How I Feel for the Week ending 2.14.14……

Good day folks and a very Special Happy Valentine’s Day to each of you.  Would you be my Valentine??  Well let’s just get right to it, I feel about 2.5 and that is a weak number.  I got out of the hospital on Tuesday the 11th (after the 9th day of captivity) BTW we are starting the Post with AC/DC blasting “Thunderstruck” in my head, almost appropriate I think.  The music is much more enthusiastic than I have been all week.   Last week I rated the week a 2.25 and that was a solid rating given how I was feeling, my location and all the other giving facts.  This week report will not move much off that number.  So many of the reasons I was in the hospital are still with me, the cough very productive (with the bright yellow crap), the Shortness of Breath (SOB), chills, overall weakness, I do lack the self-pity, and I can read and write (which are positive signs), so having the scales of healthiness before me, the week gets a 2.5, I am improving, and I am doing things.  The reality is that I don’t feel that much better than I did in the hospital.  But if I am going to feel like crap I would much rather do it at home.  I was a touch under the weather during my hospital stay, and to fight the bugs that were trying to control my body at one point or another I was given the following drugs: Merrem, Vancomycin, Cefepime, Levofloxacin, IPRAT/Albuterol, Methy1prednisone (via IV), tobramycin (via neb), Levaquin, azactam,  and Acetaminophen.  I have stopped taking all of these with the following exceptions, Merrem and Tobi (10 days post hospitalization), IPRAT/Albuterol (taken normally) and now on oral prednisone 10mg.

 

The day before I was released from the hospital I had a PT assessment and during that brief test I managed to walk 300 feet with the walker.  That was the 1st time in 9 days that I had been allowed to venture outside the room. While as a guess, I was given enough cannula to venture from the bed to the bathroom, but not quite enough to get from the bed to the door, so my area for pacing was greatly limited.  Wednesday the 12th I visited Doc Infectious’s office to pick up medicines, and to have my Mediport dressing changed.  Then off to the grocery store, where I walked 400 yards pushing a grocery cart.  Big improvement for 1 day I would say, but damn I was beat. (Side bar comment I have my iPod on shuffle, I have gone from AC/DC to John Penet, to Allen Jackson, to CC Rider by Ray Charles to Locomotive Breath by Jethro Tull… Strange mix).  The bottom line is that I am still significantly weak, and still sick.  I am improving, but the reality is I don’t bounce back as I used to. 

 

Let get the vitals out of the week ending 012/14/14

NR = 1.5 taken 02/12/14 

O2 level = 95 taken on 02/14/14

BP 118/64 = taken 02/12/14

Heart rate = 98 taken 02/14/14

Temp = 97.7 taken 02/14/14

Weight = 264 (hospital weight lost) 02/11/14

— This is the one of the most beneficial reasons for going to the hospital.   I went in weighting 278 and not happy, 9 days later with the most extensive exercise I did was rolling over on the bed, and I lost 14 lbs. Another 6 or 7 weeks there and I could get down to my target weight LOL LOL.

 

Now on to the hospital rant, (you know if I spend 9 days in the hospital I will find something to rant about).  Any of you know that if you go to the hospital and are admitted you end up in a room   Each room consists of 4 walls, a 40 inch wide door, if you lucky a bathroom, many pieces of equipment hanging from the wall (TV, nurses desk, white (uninformed) board, clock (maybe), safe and or on equipment/monitor stands.  Some of these machines the IV hangs from and is passed thru a box that makes sure it drips properly, then there the stat machine which monitors your heart rate, your blood pressure, your oxygen level, and 2 or 3 other important numbers.  And as I am sure you know, that if at any point the machines that monitors’ you don’t like a number or event they start to alarm and alarm, and become most annoying.  Generally I have found the most alarms go off at 2am, the nurses are all napping, the room door is closed containing the noise, so it just beeps and beeps and beeps and friggin beeps, and then beeps some more. Which brings us to the single most important piece equipment in your hospital room (even more important than toilet paper), it is the nurse call button.

IMG_20140211_105759_401 - Copy

This device turns the TV on/off, it increases the volume, it changes channels (in only 1 direction) and it calls the nurse.  Well it connects to the nurses’ station, but from there I suspect it goes into a black hole.  If you are in need you press the bright red big button right there in the middle, it beeps once, and then a dis-embalmed voices says “can I help you?” to which you may reply, “help me!” or may I see my nurse, or “there’s a monster in the room!” or may I get a glass of juice or some such perceived need. Once you hit the button a light goes on outside your door, and a bright light fires up on the wall where the button is connected.  This is the visual alarm that goes along with the insistent beeping.  It is amazing how quick someone comes to the room to turn off the alarm and say I will have your nurse come right in.  Well 40 minutes later, still no nurse, you hit the button again, and again the dis-embalmed voice says “can I help you!” only this time the voice doesn’t seem as patience, and there is an edge on the voice saying “I told you I would tell your nurse!” 

 

You don’t rest much in the hospital, you really don’t. You don’t lay there in a comfortable position, you don’t relax, no no, you are always anticipating the next visit.  The next time someone comes in and wants to take vitals, or a doctor wants to listen to your chest, or the CNA comes to weigh you, or the vampire wants to draw blood, or house cleaning wants to know if this is a good time, or food services wants it’s empty  tray back.  So you don’t really relax, you don’t rest at all.  I say all this to demonstrate that these are the times folks come into your room unannounced or uninvited, without you the patient having a desire for them.  You didn’t hit the red button to summon someone, these folks came because they wanted to be in your room to complete whatever function they wanted.  The red button had no impact on them.  But as soon as you hit that red button all visits stop.  The light goes on outside the room, it lights up a bulb at the nurse’s station and in the room, but as soon as you hit that red button, all activity stops.  No one comes in the room for fear that the patient may have a real need that needs to be meant that moment, something that can’t wait for a more convenient time for the staff.   Yes of course I am being unreasonable and cynical, but I am the patient and I have expectations, and I truly hate being ignored when I am in the hospital.  The only good thing is that I know I am not alone.

 

I don’t have a solution for the red button, I don’t have a magic trick that works for me, I have found that to get something, it generally takes a minimum of 2 pushes of the button spaced 20 minutes apart, but have seen it take as many as 4 pushes in an hour.  But in fairness I have pushed the red button by mistake many times and have gotten immediately response and action. I am just saying this so you can plan accordingly your next visit to the hospital.

 

Folks I am extremely happy to be out of the hospital.  I am very happy to be home. I know that I am still in the recovery mode, and that it will take a couple of weeks to get back to wherever I am going to get back.  But my finger tips are sharp and I will get to doing some posts quickly. 

 

If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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Dream Sequence Part II… Biking the Beltway … a Grandpa Tale

I recently completed a post about an extended hospital stay I had.  In that post I spoke in passing of some exceptionally vivid dreams I had during my hospitalization. I also teased that I would write about them.  I was called out, and I completed the first a couple of weeks ago, entitled “Dream Sequences” where I recalled a very vivid and reoccurring dream I had about the Hospital actually being the Starship Enterprise, and my desire to find the crew and the guts of the ship which I was sure were hidden behind one of the 1,000’s of hospital doors.

The second series of dreams I had involved myself and 2 very dear friends Terry and Gary.  This series of dreams included bicycling around the “Beltway” surrounding the Washington DC.  This is the dream I am going to share today with you.

Please understand these dreams only lasted a week or so, and they took place during the darkest period of my hospital stay.  Clearly the dreams came as a direct result of the drugs I was being given to keep me alive, and if for no other reason I appreciate both the drugs and the dreams.

While I had a very real mission in my Star Trek dreams, in the Beltway dreams, it was all about getting together with my 2 very very good friends.  I worked with these guys for over 20 years and we have been friends for over 30 years.  They are also 2 of my golfing/drinking buddies.  Terry at the time of the dream was about 75 and Gary was about 68.  Sidebar remark, while I was in the hospital either Terry or Gary would call the nurses station to get a status report.  The 1st time one of them called the nurse would not share any information, from that night forward they would call and state that this was his brother Terry or Brother Gary (who lived out of state).  The nurses from that point forward, when they called, they were given complete updates on my condition.  It probably helped that my wife had told the nurses that my brothers would be calling from time to time for updates, and it was okay to share the info.               

Without further foot dragging, on to the Beltway Dream.  It was during my stay at Brandon Regional Hospital in 2008, that Terry visited and suggested that we leave the hospital, and go visit Gary.  Well maybe he just came to the room said he was going to walk me around a bit (getting my daily exercise) but we ended up leaving the hospital.   But the hospital we left was not Brandon Regional, as we transitioned thru the front doors of the hospital (in Brandon) it became Fairfax General, in Fairfax VA,   you could read the name on the marquee, as well as the sign announcing the entrance from the street.  Once outside Terry said we had to meet Gary at his place. 

I asked Terry, “Why, what’s going on.”

To which Terry said, “Don’t know we just have to be at Gary’s!”

I said “great, where’s your car?”

Terry said “Don’t have a car, but I do have a bicycle”

I said, “Okay let’s go!” 

Without even thinking, I took the seat, and Terry sat on the handle bars.  The bike had those cool butterfly handle bars, and Terry fit perfectly (all 6 feet & 200 lbs).  So visualize an Old Fart sitting between the handle bars of a bicycle with his feet on the front wheel axle.  And an almost old fart in a hospital gown securely tied (no butt flashing this time), pedaling out of the hospital parking lot. It had to be spring time because neither of us was cold. I pedaled the bike and Terry and I chatted about a variety of things, just as if we were riding in a car together.  It was amazing because the speed limit on Gallows Rd was 45 and I was staying with traffic, even pushing the car ahead of me, all along without even breaking a sweat.   Terry and I took the entrance ramp to the 495 East (beltway) and easily merged into early evening traffic (remember I am pedaling a bike {and it isn’t a 10 speed}).  Terry and I are cruising along at speed (on the bike), at approximate 65 mph (we stayed in the right lane), gown flapping (butt not showing) in the wind, and Terry and I just chatting away. When traffic starts to bogs down and we move to the left passing slower traffic.  Still chatting away, not having a care in the world.  We are maintaining proper spacing between vehicles, and rapidly progress to our exit (Van Dorn), but because I am stuck in the far left lane, we cannot cross 4 lanes of traffic to get off at our exit, we are required to proceed to Telegraph Road (2 miles further East past Van Dorn), exit 495 and reenter going West.

It gets strange now (like it wasn’t before), because as soon as we reenter 495 West (Beltway), we are in the throes of a massive snow storm. We have approximately 2 miles to Van Dorn, and we (I) are pedaling against 40 mph winds in a blinding snow fall.  I can barely maintain control of the bike as we continue our trek to Van Dorn.  Luckily for me Terry is acting as a shield, keeping a lot of the wind off me. But riding a bike on snow in 40 mph winds is a real trick especially when you have 200 lbs. of Old Fart in front of you.

We finally arrive at Van Dorn, I have snow crusted on my eyebrows and kneecaps, Terry is freezing his ass off, and we have to walk the bike up the hill at Van Dorn.  The storm was getting worst, and we say F#$^OI It!!! and stop at the Comfort Inn on Van Dorn.

We walk into the Lobby (bringing our trusty bike out of the storm) and immediately go and stand in front of the fire, and take the chill off.  Terry and I both notice that the Hotel is extremely not busy given the circumstances.  So not busy, we are the only people there.  Not a soul is around including staff, we have the place to ourselves, we.

We find a phone and call Gary, told him we couldn’t make that last mile, and we were stuck at the Comfort Inn. Gary says, “Don’t worry, I will grab a couple of cases of beer and be right down.”

Shortly Gary arrived at the Hotel.  But when he started to enter the hotel, the doors disappeared, and became a solid sheet of glass.   Also the storm continues to rage, and now there is almost 2 foot of snow packed against where the door should be.  Terry looks forlornly at the beer Gary is carrying and begins to rush around looking for an entrance.  Terry needs his beer LOL LOL.  Finally Gary screams for us to go sit at the fire, and he would figure a way in.

Gray traipses around the hotel 2 times, and finally finds a service entrance buried under 4 feet of snow.  Undeterred Gary digs thru the snow and emerges in the Lobby beer in hand.  The three of us gather at the fire, pop open some beer and chat, talking about our experiences that day. But none of us finding it (even the tiniest bit) strange that there is 4 foot of snow in the Washington DC area in late spring, or finding a Comfort Inn at a busy intersection to be abandoned, but with a nice warming fire and no doors, or pedaling around the Beltway (495) on a bike built for one (with 2 riders) at 65 mph. Or how strange that Gary can walk a mile in 4 foot of snow carrying 2 cases of beer, (without being wet or cold) and him only being 5’5 at best.  We chat like the old friends we are.  That was the normal part.

Folks, this ends my dream sequence posts.  During that dark period, these dreams came and went for about a week or so.  But sitting here typing them out, they are as real in my mind as the nights I had them.  I have never had any such vivid dreams since this period, and none that I can remember to this level of detail.

If you have any questions concerns comments please feel free to ask, I will do the best I can to answer honestly.  No I don’t remember what drugs I was on at the time of these dreams LOL. 

Thank you for indulging me as I share these dreams with you.  Please take care, Bill

 
26 Comments

Posted by on February 12, 2014 in Grandpa Stories, Humor, Ramblings

 

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How I Feel for the Week ending 02.09.14

First off, a grateful thanks to my wife for bringing my laptop to the hospital.  Using the Nook to provide input and to post comments has been a test of each tiny skill I have (I have used the stylist so much I can spell it).

Now on to my weekly “How I Feel This Week” report.  Normally I would have a phrase or word of the week, but circumstances this week have superseded those.  Thank you for your patience, as some of you know I have been in the Brandon Regional Hospital since Monday the 3rd. This has effectively limited my ability to post, and a variety of other things.  I am on the mend and I suspect I will break out of this joint by Tuesday, but please don’t hold me to this.  The official diagnosis is Tracheobronchitis (a fancy way to say Bronchitis) with flare ups of both the MRSA (methicillin-resistant Staphylococcus aureus bacteria) and Pseudomonas which has taken up residency in my body (has been there for a good bit). This diagnosis coupled with the deficiency in my immune system, forced this hospitalization.

Tracheobronchitis — as taken in part from WiseGeek.com (http://www.wisegeek.com/what-is-tracheobronchitis.htm), Tracheobronchitis, also known as bronchitis, is a condition involving inflammation of the windpipe or bronchi, both of which carry air to the lungs. This is often the result of an infection, but can also be due to an irritant or allergic reaction. Symptoms include a cough, wheezing, and sore throat. Treatment usually focuses on the symptoms because the condition generally heals itself naturally and relatively quickly, but sometimes antibiotics are prescribed. Rest and lots of water are commonly recommended to speed up the recovery process.

The respiratory tract contains both the windpipe and bronchi. When inflammation occurs in these parts of the body, it is often referred to as tracheobronchitis. This is a relatively common condition that can be the result of a viral or bacterial infection. If a person swallows or inhales an irritant, inflammation can also occur.

Given the situation and the fact that my butt is parked in the hospital I am going to rate this week a 2.25, though it is very close to 2.5.  Clearly it could have been worst.  Upon admittance I was given an immediate jump start with a variety of steroids and antibiotics.  Normally my prednisone dosage is 10mg daily; this was increased to three daily IV injections of prednisone at 125mg each.  Since Monday they have been backing off the steroid dosage and by tomorrow I should be back to the “normal” level.  In addition to the significant increase of prednisone, I have been given at litany of antibiotics to suppress both the MRSA and Pseudomonas which have included: Levofloxacin, Cefepime and Vacomycin to name a few.

The reality is that once they got my breathing back on a “normal” level, I have felt pretty good for the most part.  The overriding (outwardly appearing) issues have been the friggin cough and the SOB (shortness of breath).  I have had that “close the door we don’t want to hear it” cough all week.  But inside of the body the fact that my immune system has deficiencies, the overall impact of the Tracheobronchitis could have had significant more play.  Clearly the monthly IVIG treatment I get to amp up my immune system has paid off in part.  Without the benefit of these treatments, my body would have been much more receptive to the bacteria of both the residence MRSA and Pseudomonas.  Had this been the case, the regiment of antibiotics would have been significantly greater, and for a longer duration.  As it stands now I will only have 1 drug for an additional 10 days (IV feed Merrem {this further combats MRSA}), upon my release from the hospital.

On the lighter side here are a couple of the changes here since my last visit; Valet parking at the emergency room, food service in the tanks, no menus in room, staff has been (for the most part) excellent.  I hospital

Moving from the lighter to the boring information, these vitals were taken at 3pm EST 02/09/14. Even healthy folks would like these numbers.

Blood Pressure = 116/96

Temperature = 96.1

Heart Rate = 88

O2 Level =- 94/95

Folks I want to thank you for your well wishes, thoughts of concern and prayers this week.  Each has helped in its’ own way, and I truly appreciate the outpouring.

Well folks I hope you have a pleasant day.  As always your thoughts and comments are welcomed and encouraged – take care, Bill

 

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How I Feel The Week Ending 01/31/14….. Living with COPD

Hello Friday, here comes the weekend and the Super Bowl.  Watching the Super Bowl is an annual event, and I have truly enjoyed many over the years, but I would be lying if I said the commercials weren’t important to me.  So bring on the Commercials and hopefully the game won’t get in the way. 

 

That’s quite enough levity for my post today, not that I won’t sprinkle more in as I pound away on the keyboard.  Let us proceed and get the vitals out-of-the-way.  I have not been in a Doctor’s office in a couple of weeks to check my blood pressure, but I would say because I feel fine that there is no significant change to it today.  My resting heart rate today is 104, and my oxygen concentration is 95 percent again in a resting mode. My weight depending on time of day is maintaining a weight higher than I want, but is tracking downward.

 

This week I have had only one doctor appointment and that was with Doc Head.  I don’t know how one measures progress when the examination of your head and its contents are what is being measured.  Is relief a measurement? Is getting it off your chest a measurement? If you cry or smile are they measurements of progress or lack of progress?  I assume the fact that when I walk out of her office I actually feel better is the true measure.  I have asked her point-blank, if I was crazy (others have thought I was LOL) and she has told me NO, I am not crazy, so for all you doubters out there, I have got a professional opinion, so there! LOL LOL

 

Now on to the heart of the matter about how I feel this week.  I am giving the week a 2.75.  I feel just a bit off-center and have felt this way all week.  The SOB and the physical limitations that come with it has been real bad, and the cough (while somewhat productive), damn just will not subside (I do control it somewhat with meds).   I am not having any of the early signs of and exacerbation or anything I can point at directly and say “Oh, this is why,” and that is a good point. But it is the cumulative total of things going on inside me that makes me rate the week 2.75.   

 

This week’s word is; Infusion Treatments.  I have talked endlessly about my monthly IVIG treatment and have spoken countless times about the post hospitalization IV treatments that are a part of my world. But I don’t believe I have gone into any real detail.  Yes I have whined about being a difficult stick, and that the nurses have had to prod me several times each month to successfully get the needle into my arm to start the infusion.  But to actually talk about it and share the benefits I haven’t. 

 

I have chosen two “book” definitions for Infusion Therapy (which I refer to as Treatments) one from Wikipedia, and the other taken from NHIA (National Home Infusion Association).  I have included the links to both of these definitions for your further use.  Normally I cherry pick the information to a great extent, today not so much.  I do suggest you go to the sites to get further information.

Infusion Therapy (as taken from Wikipedia, the free encyclopedia)

http://en.wikipedia.org/wiki/Infusion_Therapy

In medicine, infusion therapy deals with all aspects of fluid and medication infusion, usually via the intravenous route. A special infusion pump can be used for these purposes.

Treatments — Infusion therapy involves the administration of medication through a needle or catheter. It is prescribed when a patient’s condition cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

Until the 1980s, patients receiving infusion therapy had to remain in an inpatient setting for the duration of their therapy. Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings. For individuals requiring long-term therapy, inpatient care is not only expensive but also prevents the individual from resuming normal lifestyle and work activities.

Infusion Therapy as Taken from NHIA (National Home Infusion Association) http://www.nhia.org/faqs.cfm

What is infusion therapy? —Infusion therapy involves the administration of medication through a needle or catheter.  It is prescribed when a patient’s condition is so severe that it cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

“Traditional” prescription drug therapies commonly administered via infusion include antibiotic, antifungal, antiviral, chemotherapy, hydration, pain management and parenteral nutrition.

 

Infusion therapy is also provided to patients for treating a wide assortment of often chronic and sometimes rare diseases for which “specialty” infusion medications are effective.  While some have been available for many years, others are newer drugs and biologics.  Examples include blood factors, corticosteroids, erythropoietin, infliximab, inotropic heart medications, growth hormones, immunoglobulin, natalizumab and many others.

 

What diseases are treated with infusion therapy? — Diseases commonly requiring infusion therapy include infections that are unresponsive to oral antibiotics, cancer and cancer-related pain, dehydration, gastrointestinal diseases or disorders which prevent normal functioning of the gastrointestinal system, and more.  Other conditions treated with specialty infusion therapies may include cancers, congestive heart failure, Crohn’s Disease, hemophilia, immune deficiencies (this is the condition that I fall), multiple sclerosis, rheumatoid arthritis, and more.

By far, the major home infusion therapies are IV antibiotics, prescribed primarily for such diagnoses as cellulitis, sepsis, and osteomyelitis; other diagnoses include urinary tract infections, pneumonia, sinusitis and more.

 

What is specialty infusion therapy? — “Specialty infusion therapy” is a term in use when “specialty” infusion medications are administered.  The distinction, if any, between the meaning of “specialty infusion therapy” and “infusion therapy” is related to the context of their use.  This para can be seen in its entirety on the defined site.

 

Why are infusions performed at home? Until the 1980s, patients receiving infusion therapy had to remain in the inpatient setting for the duration of their therapy.  Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings.  This para can be seen in its entirety on the defined site.

 

This concludes the “by the book” technical/medical aspect for the word of the week “Infusion Therapy,” and I will now proceed to give it to you as I see it.

I have been getting Infusion treatments for just at 2 years now.  My being infused on a scheduled basis came about because my Doc Lungs called in Doc Infectious to see what if anything else was going on in my body to make me so susceptible to pneumonia, MRSA and other continuing issues of the my COPD and the fact that I was being hospitalized on a very regular basis, and when I wasn’t in the hospital, I was having exacerbation on an almost regular basis.

 

Through a series of simple blood tests Doc Infectious found that my immune system had gone into semi-retirement.  My immune system was not producing sufficient antibodies in response to exposure to pathogens. As a result, my immune system fails to protect me against common bacterial and viral (and occasionally parasitic and protozoan) infections. The net result was that I got sicker quicker and longer than that of a person with a normal working immune system.  Doc Infectious said this problem (where the immune system does not work at the needed level) is not uncommon, and that it occurs usually as we age.  But it is not limited to older folks at all.  The schedule and dosage depends on the individual, and their tolerance of the medicine.

 

Doc Infectious put me on a Gammagard IVIG treatment every 4 weeks.  Originally the dosage was set at 400 units per treatment, but after several months and no significant increase in the needed antibodies, Doc Infectious increased the dosage to 500 units per treatment.  This has had the desired impact.  Recent blood tests show my antibodies to be at low normal and slowly increasing.  Doc Infectious has advised me that I may be on this treatment schedule the rest of my life, but he has also stated that the treatment itself may jump-start my body, where my body actually begins making the necessary antibodies on its own.  At which time, my dosage and schedule could change to reflect the work of my body.   

 

Now with the Mediport, the entire process is quite simple.  I walk in, sit down, have my vitals taken, then the nurse prepares the site, sticks the needle into the port, flushes the line, runs 5 mins of saline, then attaches me to the 1st of 5 bottles of Gammagard.  In infusion starts a slow rate, and with each 15 increment the speed is increased.  After 4 increases the flow is at maximum and continues until I have all 5 bottles.  I generally start at 9am and the treatment is completed around 2pm.  After all 5 bottles are infused; I get another 5 minute saline flush.  Cleaned up and sent home, total time generally 5 ½ hours. This 5 ½ hour period once a month is a small price to pay for the benefits.

 

This treatment has had a significant impact on my health, especially when the dosage was increased to 500 units a month. Prior to going on the monthly IVIG treatment schedule it would not be uncommon for me to be hospitalized 3 or 4 times a year suffering from pneumonia.  In the last 24 months I have only been hospitalized 5 times, but only twice in the last 12 months.  This represents a significant improvement.  I believe it has also significantly reduced the number of exacerbation I have suffered in the last 2 years.  I am grateful that Doc Lungs called in Doc Infectious.  Together they are a great team. 

 

Thank you for taking the time to work through this.  If you have any comments, thoughts, questions or concerns please ask.  Take care and I hope you have a great weekend.  GO BRONCO’s — Bill —

 

 

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Dream Sequences…Part 1 – a Grandpa Tale

I recently completed a post about an extended hospital stay I had and in that post I spoke in passing to some exceptionally vivid dreams I had. And I teased that I would write about them.  Well per usual I got called out to do exactly that write about those dreams.  But as a preface to that I must tell yet another story about myself.  I aged during the 60’s and 70’s I didn’t mature I just got older. I was in the Navy, and I experimented from time to time with substances that were not over the counter.  Just so you know I grew out of this quickly, and with no real harm.  I chose to stay with substances I could get over the counter (bar), and truly did not indulge in drugs much at all.  But one time I yielded to peer pressure, I did something I wish I hadn’t, and tried a little pill.  For the better part of the next 30 hours I was visited by a variety of atrocious little purple “smuff” like creatures.  They were in the car with me as I drove, they stood a couple watches with me on board the ship, the shared the blanket in my rack, and while not violent or scary, they were with me all of those 30 hours. They have never visited again, and they are not welcome.  As vivid as those little creatures where for those 30 hours, they came nowhere near the vividness of my drug induced dreams in the hospital.  The dreams I had in the hospital were so real, so vivid, so life-like, so perfectly formed in my mind that while I was sleeping it was my reality.  I not only did I dream in color it was Technicolor, not only did I hear, but I heard in surround sound.  These dreams were so exhausting that I was almost comatose the rest of the time.  

I know even as I put words to post, that my recounting of these dreams will not do them justice.  It will help you to some degree if you have even the slightest knowledge of Star Trek (the William Shattner years) in understanding and appreciating these dreams.  The other series of dreams I had were equally as vivid as the Star Trek ones but were focused on a couple of my dear friends, and the Alexandria area of Northern Virginia.  If you have knowledge of the beltway surrounding DC, you will understand how absurd these dreams were, and when you compare them to the Star Trek dreams you go, wow, Bill really could have been on and in charge of the Starship Enterprise. You don’t know them, they don’t know you, and I will only use their 1st names.  I will admit that Terry, Gary and I consumed a lot of alcohol and a ton of laughs when I get to talking about them. 

Dream Sequence #1 

I think I 1st need to say that I never actually slept all the way thru a night. These dreams would be interrupted 2 or 3 times, and that when I fell back to sleep, my mind kinda jumped started the dream from wherever I was when awoke.

In my dreams I always awoke in my hospital bed, but I was never bound, I didn’t have the IV, I didn’t have any of the million monitoring clips glued to my body, I wasn’t being supplied with oxygen, I was free to move.  Because I was so healthy and free, I couldn’t understand why I was sleeping in a hospital bed (but I didn’t ponder that). I also realized when I awoke that my hospital bed was in fact onboard the Starship Enterprise (but it looked more like a hospital), and that Capt. James Kirk, was not available to command.  Those responsibilities rested on my shoulders. I dreamt I raced thru the corridors of a ship (hospital) searching for the secret entrance to all the ships facilities. I checked and looked in every room, I opened every door.  I knew that the Enterprise was being hidden from me and if I opened the right door I would find crew and the real bridge, the gallery, the weapons room, crew’s quarters, sick bay, and all the other necessary spaces to have complete and total command of the Enterprise.

This dream changed each night slightly, sometimes my search was fruitful. Sometimes I would find the Bridge, and the times I found the bridge it was fully functional, Comm, radar, weapons, internal Comm, I could even contact the “Transporter” room.  But other nights I didn’t find the bridge, or if I did it wasn’t a functional bridge it was a decoy.  But I would find another fully functional space like the engine room. Not one time did I have this dream where everything I found was functional. Nor did I ever find any member of the crew. I was in charge alright, but only of me.   

The uniform factor in each dream was that I was always running around the hospital in my hospital gown and hospital slipper socks.  I guess it was a good thing I never found the crew, it’s pretty hard to command with your butt is exposed.  Of course I realized that I needed to be in uniform to conduct a proper search, but again finding the hidden entrance and the crew to the “Real” ship was a higher priority than being dressed.

I do remember that my level of frustration would skyrocket on those nights I could not find the bridge.  But as soon as I would drift off to sleep, I would again race off in search of the bridge.

I do remember one night it was particularly stressful because I did find a fully functional bridge, but upon checking the radar system I found that we were being tracked (for attack) by a Klingon cruiser approaching in stealth mode.

It always seemed that just when I was getting to the last door in the hospital, because I had checked everything else and all other potential locations, just as I was about to find my crew, I would awake back in my hospital bed in a cold sweat, terrified and making the nurse change my dirty sock slippers. 

I suspect I thrashed around a lot, and coupled with the fact I had removed myself from the ventilator more than once is the reason I always woke up bound to the bed.  This dream occurred for 3 or 4 nights.

Me, telling this story is so much easier in person after sharing a few drinks.  You could watch my facial expressions and see my hands flying thru the air. I could convey the vividness so much easier talking and I would field questions along the way. 

I am not going to get into the Beltway story about Gary, Terry and I now. This post has gone on long enough. And I don’t believe you have had enough alcohol to make it fun.  Maybe I should have had 4 or 5 drinks as I type it.  It probably would have made more sense. LOL By the way in review the 1st and last couple paragraphs were the best.

Folks thanks for taking the time to visit my blog.  If you have any questions or if you want specific details about my dream please feel free to ask.  Take care, and have a pleasant day.  Bill

 
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Posted by on January 28, 2014 in Grandpa Stories, Humor, Ramblings

 

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Postscript to How I Feel The Week Ending 01/24/14.. Living with COPD

During this post I spoke of my extended stay in the hospital.  I need to clarify some aspects as I know them about the hospital stay.  I was admitted on March 11, 2008 and I was Discharged on June 21, 2008 a total of 102 consecutive days.  Of that time I was in either the ICU ward or in post op ICU for approximately 85 days. I remember many of the events as snapshots, and only parts of conversations. A lot was relayed to me after I was released from the hospital in general conversations with my daughter, my wife, and my friends that either called or visited.

I do remember clearly the evening the hole developed in my left lung. It happened about the 3rd or 4th day after my open heart surgery. Allison my daughter was visiting was at the time.  I felt a small pop on the left side of my chest, no pain, no discomfort, just a little pop. We continued our visit, and soon we were joined by my Aunt Ina, her daughter (my cousin), and her two children.  After their departure, I noticed that the left side of my neck was swelling and puffiness in my chest, and so did Allison.  We called the nurse, and she got the doctor.  It was determined that my left lung had ruptured, and a small hole was the result.  The swelling was a result of air escaping into my body.  Because the hole was so small, a wait and see position was taken.  For approximately 8 days they watched the hole in hopes that it would close up by itself.  The hole did not heal itself, and may have actually gotten larger.  Throughout this period I was alert and as normal as one can be a week after open heart surgery.  It was decided because the hole would not heal itself, they would have to go back in and repair the hole. It’s from this moment forward that my memories are sketchy at best, until I was transferred to Kindred for continued supervised recovery and rehab care. I am going to share some of those memories and snapshots in bullet form (in no particular order). 

  • Ø Upon recovery from the lung surgery having very vivid dreams in color, and in great detail.  Family and friends still get a good laugh when I talk of them. 

  • Ø Waking up with the trach and the doctor handing me a sharpie and a thick pad of paper, and wishing I could spell all the words for the questions I had 

  • Ø Being told that post lung surgery that I had pull the ventilator out twice that’s why I was being restrained 

  • Ø Countless visits and calls from friends and family 

  • Ø The hours of wondering if I was going to die and not ever be able to talk again. 

  • Ø Watching “Monk” 2 times every day, and “The World’s Deadliest Catch” 

  • Ø Losing 55 pounds, it was a very effective diet 

  • Ø Having my beard and mustache removed by someone who didn’t give a shit 

  • Ø Being transferred from Brandon Regional Hospital to Kindred Hospital.  And seemingly being the healthiest person there.  But the place had some of the best hospital food I have ever had. Kindred wasn’t a hospice, but folks didn’t go there for long-term anything. Kindred was the only hospital that I have been to, where English was not the predominate language of the nurses. 

  • Ø Some very crappy attitudes of the ICU nurses at Brandon (that has changed over the last few years) 

  • Ø The extremely vivid dreams I had while in post op recovery ICU these could be really funny to share.  They do include being in charge of the Star Ship Enterprise, and bicycling around the Beltway around Washington DC (at beltway speeds) with a dear friend on the handle bars.   I could not have had more unique dreams had I bought the drugs on the street. 

That folks is enough show and tell for today.  Thank you again for taking the time with me as I recount this.  Being honest I hadn’t really thought much of this in the last 3 or 4 years. 

As always if you have any questions, comments, or concerns please feel free to ask.  Take care, Bill

 

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How I Feel The Week Ending 01/24/14….. Living with COPD

Some of you regulars will notice a slight change in the title of my post, but it really isn’t a big deal, just a better description of the content of my post.  I have not had a single doctor’s appointment this week, I haven’t made a future appointment this week, and I don’t see the need. This coming Monday is my next regularly scheduled appt with Doc Head, and because it is a regular thing, no need to dwell on it.  That’s all that’s on my table medically for me.  This week has been a 3 week, for a couple of days I almost went to a 2.5, but I have settled in on 3. For the curious, both physical and mental aspects were the driving factor towards pushing the week to a 2.5. As I sit here resting and doing my purse lipped breathing my O2 level is 95 percent.  My heart rate is 98, temperature is in the normal range, and my weight still too damn much, but is working ever so slowly in a downward trend.

This week’s word is a phrase; Stages of COPD.  I don’t know if I have ever really qualified the stages of COPD, I might have made mention of them, but I don’t believe I have specifically address these.  Being quite honest, none of my friends or fellow bloggers have asked the question, either out of politeness, or concern for my feeling, or concerned about how the answer might impact the asker.  Hopefully this will help provide a better understanding.  I am going to start out with “book” definition of the term, as I am in a habit of doing then I will address the Stages of COPD as they have impacted me, and I will try to shed light on when I passed thru a stage to my knowledge.  I am also going to speak briefly on “end stage” COPD, and will provide a link to the site that I worked from.

I have chosen the EMedTV website, (http://copd.emedtv.com/copd/copd-stages) for the “book” definition because it seemed the simplest to convey and understand. Of course I have cherry picked the definition for the purpose of this post, but you can go directly to the site posted about to get the “complete” definition.  Most of the others (and I have added links for a couple of them) go into great detail about FEV1 and its relationship to “normal,” as the baseline for the stage. The problem as I see it is; the sum total of all of us equals the “normal,” where very few of us actually equal the “normal.”  How is that for left-handed logic?

COPD Stages – The four stages of COPD are “at risk,” mild, moderate, and severe. In order to determine if someone has this condition and which stage he or she is in, a healthcare provider generally uses a breathing test called spirometry. (Spirometry is the most sensitive and commonly used test of lung functions. It can detect COPD long before you have significant symptoms.)  The symptoms vary for each of the stages, but generally include increasing amounts of coughing, sputum production, and difficulty breathing.

What Are the Stages of COPD? Based on the spirometry test, your doctor can determine if you have COPD and how severe it is.  The stages are listed below:

  • Ø At risk

  • Ø Mild COPD

  • Ø Moderate COPD

  • Ø Severe COPD


At Risk —
In the at-risk stage, the breathing test is normal, but there is a possibility of developing COPD. Mild symptoms of the condition include a chronic cough and sputum production.

Mild COPD — In the mild stage, the breathing test shows mild airflow limitation. Symptoms may include a chronic cough and sputum production. At this stage of COPD, you may not be aware that airflow in your lungs is reduced.

Moderate COPD –- In the moderate stage, the breathing test shows a worsening airflow limitation. Usually, the symptoms have increased. Shortness of breath usually develops when working hard, walking fast, or doing other brisk activity. At this stage, a person usually seeks medical attention.

Severe COPD — In the severe stage of COPD, the breathing test shows severe airflow limitation. A person is short of breath after just a little activity. With very severe COPD, complications like respiratory failure or signs of right-sided heart failure may develop. At this stage, the quality of life is greatly impaired and the worsening symptoms may be life threatening.

Another link is from Caring.com which I have found to be another useful site for COPD related information.

http://www.caring.com/questions/stages-of-copd

Another site which I have found helpful in my research is About.com, here is a link directly to COPD grades (formally stages) 

http://copd.about.com/od/copdbasics/a/stagesofcopd.htm.

So ends the technical aspect of my post.  I will now relate the more personal aspects of stages of COPD and my journey thru them.  And as a preference I will refer to them as stages, it seems more fitting than calling them grades.  Grades I always seem to think I could improve with some effort, but stages just seem to me to be points.

The first stage is defined as “At risk.” My earliest recollection of being told I was “at risk” was sometime in the 1979-80 timeframe. As far as I am concerned “at risk” shouldn’t even be considered a stage. I think we were all born at risk, some of us by the environment we grew up in, some of us by smoking, some of by the environment we worked in during our careers, even some of us by the very makeup of our bodies, are “at risk.” Add to this the fact that the symptoms are so weak, so minor, that they can easily be ignored, makes being “at risk,” a non-issue.  I can only speak for me but as a reformed smoker I am also sure that the first 293 times a doctor told me I was “at risk” I am sure in my mind he or she was talking about being “at risk” of developing lung cancer.  Way back then the medical definition of COPD had not even been developed or offered as a diagnosis, most of us were told it might be asthma or emphysema, or we could have been told it was a combination of those.  But it wasn’t COPD and it wasn’t terminal.  I suspect that even today 01/24/14, if someone goes into a Doctor’s office and are told they are “at risk” (as defined above) of developing COPD.  They walk out the door going “oh okay, we will see what happens.” For me, I had been going thru the “at risk” stage for years, and paying it no mind. 

I think I completely skip the “mild stage” and migrated directly into the “Moderate stage” of COPD.  I believe it must have been sometime in the mid 80’s that I took my first spirometer test, (the link is below) with the results showing mild airflow issues which I immediately attributed to smoking, and closed my ears to my doctor. At this point I was a bit overweight, and had been riding a desk for a long time, and was still smoking 2 or 3 packs of cigarettes a day.   

(http://copd.about.com/od/copdexacerbation/f/spirometrytests.htm)

But the reality was I was just ignoring the writing on the wall.  But one of the medical issues I was having, were all too frequent bouts of bronchitis. From 1993 thru 2004, I must have had bronchitis at least 12 to 15 times.  By the time I got settled in here in Florida and had my first spirometry test in a decade that my bronchitis had graduated to chronic bronchitis. I started taking medicines specifically designed to help and aid respiratory issues.  It started time nebulized drugs (Dulneb), a rescue inhaler, and the continued use of Theophylline (as much as 600mg 2x now 200mg 2X).  Other than being short of breath all the time (which I attributed to being so overweight) there were no real symptoms impacting my life or world.  But in July 2006 things changed quite rapidly.  I developed a Bi-lateral Pulmonary Embolism, which focus attention on my lungs.  As a result I was faced with a harsh reality.  I had some serious respiratory issues, and to my great surprise it wasn’t cancer. 

After I recovered from the embolism, I had a series of tests including a spirometer and sleep tests.  The sleep test revealed I suffered from sleep apnea, and restless leg syndrome, but with the use of the Cpap machine that seems to have stopped and I do rest better.  But the spirometer test and numerous x-rays revealed scar tissue (from all the bouts of bronchitis) throughout my lungs and significant worsening of the airflow thru the lungs. Now I was on the program, my diagnosis had not been defined as COPD but chronic bronchitis, the medications I was taking doubled and frequency of nebulizing went from 2 to 4 times daily.  In the past I had been half ass in my approach to using the nebulizer and the Advair, but now I started using them religiously.  I was now also put on oxygen at night when I slept.

My movement to the Severe Stage of COPD came rapidly.  In March of 2008 I was hospitalized for having an anxiety attack, tests revealed I had 2 blocked arteries to the heart, and bypass surgery was needed.  The bypass surgery was a great success.  During recovery, while still in ICU, a hole developed in my left lung behind my heart.  The team of doctors waited a week to see if the hole would heal itself, it didn’t, and I went back into surgery. When I came out of surgery I was on a ventilator, my memory is quite shaky here, but I have been told by more than one, that not only did I pull the ventilator out once, but I did it a second time. From that point forward I was restrained to keep from pulling it out again.  After a couple of weeks (or so) on the ventilator, I was successfully weaned from ventilator.  I woke up in the intensive care ward, still violently ill, and fighting.  But complicating matters was the fact that I now had a Tracheostomy (see link below).  It wasn’t a pleasant surprise, but at least I woke. After I learned the trick to talking, I asked the doctor how long he thought I would have to deal with this and he said maybe forever. Well he wasn’t correct after 2 weeks the trach was removed, and I was breathing on my own again. I was finally discharged from the hospital in late May 2008.  But now I was on oxygen 24/7/365, and have been ever since.  I was officially diagnosed with COPD in July of 2008 and that when the decent down the ladder began.

http://www.thoracic.org/clinical/critical-care/patient-information/icu-devices-and-procedures/tracheostomy-putting-a-breathing-tube-through-a-small-hole-in-the-throat.php

For those interested in keeping score my FEV1 is 39.  I meet most of the criteria for the Severe stage of COPD, but thankfully I have no heart related problems.  I have been plugging along at this stage for almost 6 years, yes it is sometimes difficult, but smiling I am here and I am pretty active, but most importantly I am full of life.  Yes it has been a fight, but one that I willingly partake every day.  If you learn anything from this, learn to fight; learn to not give up or in.

This is getting extremely long, and I was going to add the technical definition of “End Stage” and my comments, but I think I will wait until next week.  Of course if you have any comments, thoughts, questions or concerns please ask them.  Take care and I hope you have a great weekend.  GO BRONCO’s – Bill (I am pulling for the Bronco’s because my beloved Redskins suck)

 

 

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Milton: “The mind is its own place…”

Hunt wrote this months before we became acquainted. She wrote this post before she was diagnosed with COPD. But these words sum up the efforts, the emotions, the anguish, the fears folks with COPD go thru on a daily basis. Hunt realizes the battle she is in, and she seems prepared to fight the damn disease to the very end. We now share war stories, medical tips and any other information we have at our fingertips. I can’t be more proud of her or her efforts, and she’s a good one to have on your side as you wage your own war again COPD. Take care, Bill

Chasing Rabbit Holes

Today, as has been the case for over a week now, I was having trouble breathing. Something about late August, maybe. For a year, I had been good – no sudden difficulties or that incredibly tired feeling – just the effort to breath taking everything I had. The act of eating seeming to be more effort than I had in me. One of the blessings of being unemployed right now is during this episode, I was able to just lay down, sometimes sleeping for three hours at a time. The body repairing itself.

I have this breath test “machine” I can use to monitor how I’m doing. On a scale from zero to 800 – 800 being a really healthy person – on a good day, I come in at 180-220. The pulmonary specialist set the gage on the right to indicate green, yellow and red for danger zones. Green…

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How I Feel Today 01.10.14…. living with COPD

Last week I started this post “Gosh so much has changed and so little is different.”  I went on to say, “That statement has zero impact or significance to this entire post.”  Well this week that statement is in fact the sum total of this post.  There have been absolutely no significant or insignificant changes in my health in the past week.  I will rate the week 3, a nice consistent 3.  No ups or no downs.  No left or rights.  Just plugging along. 

Stats:              O2 = 80

                        Heart rate = 121

 5 minutes later those numbers are:

                        O2 = 96

                        Heart rate = 104 

Before I gave those 2 stats in I had just completed moving the wash from the washing machine to the dryer, and emptying the dishwasher, then walking the 40 feet to my office.  Mind you I was using my using oxygen supplement at 2.5 lpm during this activity.  This is my world.  And please! please! please! no pity parties.  I shared this to make a point, that being, even the slightest activity can and does have a very real and immediate impact on anyone with COPD or Emphysema, or any other respiratory distress.

Over the past year I have used many terms that are day-to-day words and phrases to me.  I throw them out like everyone would know exactly what the hell I am saying and would need no further explanation.  Well, surprise surprise, I have been called out more than once so for doing this.

 

Because I have been so fortunate recently health wise, I am going to start using this space in my weekly “How I Feel Today” post to define a word or phrase.  I thought I using my soapbox (this Post) was very appropriate, because it is about how I deal with COPD. What I do to combat it, and how it impacts my daily life.  I hopefully can help those who are fortunate enough not to have COPD or any other respiratory disease/distress to understand the ramifications of the disease.  I also hope this helps those who have recently been diagnosed, as well as, help anyone else who might have a need.  

 

So for the time being when I do this weekly report I am going to include a segment on a particular word or phrase I use or have used.  I will also take suggestions from my readers for the word or phrase of the week.

 

This week’s word will be EXACERBATION:

In simple terms (as defined by About.com) an exacerbation is defined as a worsening of COPD Symptoms . The Global Initiative for Obstructive Lung Disease (GOLD) defines it as “an event in the natural course of the disease characterized by a change in the patients baseline dyspnea, cough, and/or sputum, that is beyond normal day-to-day variations, is acute in onset and may warrant a change in medication in a patient with underlying COPD”.  (taken from about.com).

 

An easier definition to understand is: In the simplest terms, having a COPD exacerbation means you are experiencing a sudden, worsening, or flare-up, of your normal baseline COPD symptoms.

 

The WebMD link below takes you to a comprehensive list of 10 signs of a COPD exacerbation. 

 

http://www.webmd.com/lung/10-signs-copd-exacerbation

 

That folks end the technical aspect of my presentation. LOL. Now I will talk about how I visualize an exacerbation and what it does to me, I will try and describe what signs I look for, how I respond, and what is the long haul result of an exacerbation.  Folks I am talking about me, not you, it is important you realize this.  Each one of us who suffers from COPD or any other respiratory disease or distress, will respond to an exacerbation in your own way, you will come to learn your signs, you will learn how you need to respond, and you will know the long term impact of an exacerbation to and on you.

 

When I was told I had COPD and that there wasn’t a cure, and that I had limited time (3 to 5 years), to say I was shocked would be a gross understatement.  I began doing all the classic things, I pouted, I moped, and I went and saw a preacher to ask if they would do the eulogy.  I checked to see how much insurance I had, and got my financial things together. I was racing around getting my ducks in a row, because I had “limited” time.  This took about 4 months. Then I had a realization. I wasn’t going to die of COPD tomorrow, or the next day, or even the following week.  As a matter of fact, according to the doctor I had 3 to 5 years, that was the day I decided to live. 

 

I am a verbal and visual kinda guy.  In order to come to terms with my disease, I had to see it, touch it, and of course feel it.  I began to visualize a ladder with a ton of rungs, maybe 50 or a 100, it could be 500 even 1,000. But there was a finite number. I realized with each step down I was descending towards my death. But I decided I was going to fight it each step of the way.  I did little things like exercising more, and eating less, I paid attention to what was going on around me, and I enjoyed it more. Yet in my mind I kept seeing my ladder, and I still see it every day.

 

Each day I step downward toward the next rung of the ladder.  Most days I hardy make any progress at all towards the next rung.  Some days I feel like I have taken two or 3 steps.  But without a doubt, whenever I am hospitalized, or have had an exacerbation of my COPD, that is a significant step down the ladder.  For visualization purposes I think I make downward steps the 1st couple of days of hospitalization.  After those first couple days, the medicine regiment starts to kick in, and immediately slows the process.  By the time I am released from the hospital, my steps down the ladder have slowed significantly and I think and feel like I am only making tiny partial steps again.  When I have an exacerbation, my progress is not repeat is not as rapid as a hospitalization, but it is a rapidding (made up word) of the process.  Being able to recognize the signs of an exacerbation are critical, it gives me an early warning, it allows me time to consult my doctors and start a course of action to get it under control before additional significant damage can be done. This is where that list of ten steps offered by WebMD really comes into play.

 

One of my earliest warning signs (before the list kicks in) that something ill is in the wind is when I can’t read.  I love to reading; I am reading something pretty much all the time.  I have my nook with me all the time, I use my smart phone.  When I find myself starting to play mindless games on the nook or phone, I know I have an issue brewing.  If I am stupid enough to ignore that sign, the next major sign for me is an inability to stay focused.  Those are the earliest signs.  After that is the normal signs, coughing more, yellow crap coming from my lungs, even being more short of breath than normal, and being bone tried all the time. These are my signs, but by the time I am coughing up crap, if I haven’t paid attention, it’s a sure bet I will end up in the hospital.  The key here is to understand your body, understand your signs, and act on them at the earliest possible time.  Please understand, it wasn’t like the day after I was diagnosed with COPD I had this all figured out.  It has been a long long process.  A process that constantly changes as I become more aware, and as my doctors become more attuned to me and my needs.  Having a doctor or doctors that you trust, who you feel have your best interest at heart, is paramount in getting through this as comfortable as possible.  I am always looking for the evolution of the disease in my body.  I am becoming a better self-advocate, and list maker of “changes” that I notice, so I can keep my doctor informed.  I ask questions, and involve myself in groups that share this disease and I am constantly learning.  My suggestion is that you do this as well.  All of this helps me better understand, and gives me an early warning.  

 

After I was first diagnosed with COPD, I didn’t have a clue what the process was going to be, I didn’t know what to look out for, I didn’t know the signs of a pending bout of pneumonia or an exacerbation.  I am still not an expert, but I am much better informed and more aware. I now have my signs.  So what do I do when I notice a sign?  That has become quite easy. I immediately call my doctors, and see them.  Then I follow their orders almost to the letter.  The one piece of doctor instruction I have the most difficult time with is the “take it easy” component, but am getting better.  If the medical process requires 5 IV infusions of drugs a day for 2 weeks, I am right there, you can pretty much set your clock by me.  If it’s a combination of oral and IV, again right on schedule, for the entire duration of the drug treatment.  I don’t stop when I am feeling better (and nor should you), I take every last friggin pill or IV treatment. I have the blood work done, and the x-rays,  LOL, I have had so many chest x-rays over the last 5 years I am surprised I have any hair on my chest at all, and that I don’t glow a lovely shade of green. 

 

What is the long term impact of an exacerbation or hospitalization you ask?  The harsh but simple truth is that each hospitalization and or exacerbation is a rung down the ladder.   You don’t get to climb back up.  But you can lessen some of the steps, and you can extend the length of distance between rungs. You’re not going to get better.  But you will make yourself more comfortable, you can increase your chances of extending you’re life.  You have to take care of yourself, you have to be true to yourself, and most of all you can’t LIE to yourself. When your sick, DO SOMETHING ABOUT IT, It won’t go away on it’s own, You’re not fighting a cold or the flu, and that is how I combat my COPD. I also volunteer, every time there is a medical opportunity to participate in a group study I have my arm up, yes I am willing to be a ginny pig, if it will help me, or if it will help someone else down the road.  I talk about my disease all the time, I gain insight from all who I talk to, and find little things that helped them, that might help me.  I am open to suggestions. And the most important thing I do is REFUSE to give up.

 

I imagine some of you are saying how the hell did he write 1500 words on exacerbation?  Well I repeated myself a little, but mostly I had a lot to say.  Thank you for sticking with me.  I am going to continue to do this if I have no serious issues to present.  As I stated earlier I will choose a new word or phrase next week, and I will entertain suggestions for words or topics from the readers.

 

Again, thank you for sticking with me, and as always if you have a question, thought or concern, please feel free to ask.  Take care, Bill

 

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How I Feel Today 01.03.14….

Gosh so much has changed and so little is different. That statement has zero impact or significance to this entire post. I said it, because it sounded cool and profound in my brain. That folks represents the kind of year 2014 well be.  So much has in fact changed but so little is different.  It is a bright and sunny (though a tad chilly @ 46 degrees) day here in Florida.  As I told a buddy earlier today who was whining about the weather up north, how cold and nasty it was, how the snow was coming in sideways, and that he was freezing his ass off. I completely respect your right to live where you want, I appreciate 3 of your 4 seasons, but I moved south to avoid winter, and wintery mixes, and foots of snow, and sleet, and freezing rain, the beltway becoming a parking lot when snow falls, and the runs on super markets when the “S” word is even mentioned during a newscast.  Folks even on my worst day here in Florida, I have never had to shovel heat. Smiling.  I truly hope each of you had a wonderful New Year’s gathering or the quiet evening of your choice.

 

Having said all that, and used it as a warm-up, I am going to rate this week a solid 3.  I have many reasons, the most important is that 3’s aren’t bad, they are better than average.  They aren’t stellar, but then they aren’t in the pits either.  I have had a nagging cough, mostly non-productive, but when I do manage to cough up a lung, other than being a pasty white and thick, there is no color to speak of.  That as all respiratory patients know, when you cough, and when that cough is productive, as long as it is not yellow, we are pretty much good to go.  Another indication that things are okay is that my white blood count is real close to “normal.”

 

This week I have had 2 doctor’s appointments.  One with Doc Lungs, and he gave me the okay dokie, and doesn’t want to see me for 3 months.  That is a very good thing, of course he did immediately say that if I started feeling bad (at all) to get my butt back into his office ASAP.  And I also talked to him regarding the use of Vitamin D.  He said he had no issues with me taking it and wrote a prescription for 1000 mg daily.  It was the 1st prescription for Vitamin D he had ever wrote (by his own admission). Clearly I wasn’t paying attention or I would have realized that he didn’t give me what I wanted.  So I made an appointment to see my internist.  He immediately understood the need, and prescribed the exact medicine that my pharmacist and recommended.  The dosage is 50,000 mg (or whatever measured unit) once a week for 3 months then a recheck.  Folks I have never had a pill that was 50,000 whatever’s.  As I sit here and talk about it I am thinking I will have to use a steak knife to cut it into pieces easy enough for me to swallow.  Just so you know my Vitamin D level was slightly low.  Suggested norm is between 30-100, mine is 27 (in whatever units they measure). My internist wants to get me to the 60-80 range before we make any changes to the dosage.

 

During the upcoming week my only doctor appointment and that’s with Doc Head.  It has been a few weeks since our last visit, so I am sure we will more than enough to fill my allotted time.

 

My vitals for the week are very good.  I am sure there are folks out there who are significantly more healthy than I, who would love to have these numbers (except the weight), oops sorry forgot to put it on.

Vitals for the week ending 01/03/14

INR = 2.1 taken 12/30/13 at 1220pm

BP 112/60 = taken at 9am 01/03/14

Heart rate = 98 taken at 9am 01/03/14

Temp  = 98.7 taken at 9am 01/03/14

Weight = to friggin much 01/03/14

O2 level = 96 pct at 330pm 01/03/14

  

2013 in Review….

January started off great, I had just completed my last visit to Pulmonary Rehab, after 36 sessions, and I was in the best condition I had been in for a while.  It was a major victory for both my head and body.  But January found me back in the hospital suffering from pneumonia again along with other issues including a partially collapsed lung.  I would be in the hospital for 21 days.  And that would be the start of a 40 day union with a pic line.  It was also during this Jan-Feb time frame that the list of drugs that were no longer effective grew longer.  There is some hope that if I don’t use some of these antibiotics for an extended period that their usefulness will improve.  During February I spent a lot of time whining. It wasn’t pretty, but then neither is COPD.

  

The hangover from the January hospitalization continues into early March. The 1st week of March showed improvement in the lungs, but the pneumonia that had been in total control of my lungs would not finally clear until the end of March.  The SOB which I suffered in March is the SOS (same old shi…) and my life has adjusted to it.  I just haven’t said anything because it is part of my new world.  Also during March I had another exacerbation which landed me in the hospital briefly.  I was discharged with the pic line in my arm for post hospitalization medical purposes (20 additional days of pic line service).  Through the spring it was a constant battle. The MRSA and Pneumonia repeatedly flared up.  Doc Infectious and Doc Lung got together to give it a good fight.  Thru the 1st half of 2013, I was sick or borderline sick most the time.  The pic line had become part of my normal circumstance.

 

No significance changes in my health took place thru April, but my head was getting so screwed up because of the constant illness or close to being ill, that I had begun to have doubts about the fight. In reflection over the year SOB and mental willingness to fight were the rulers.  I had very little opportunity to gain ground on my ailments but by the same token I didn’t lose much either.  May found me back in the hospital, and then the race began.  Everyone knew the Disney cruise was looming, and Doc Infectious and his team put on a full press.  My May stay in the hospital was only 9 days, but put my count to 38 for the year.  I do know by the end of May I had utilized a pic line for over 60 days.  Things did improve thru June, (both mentally and physically) but, again just 3 weeks prior to the cruise I had another exacerbation.  Doc Infectious jumped on this like stink on poop.  Had me back on the Pic, and had a very intense 10 days of a daily three-hour injections which put the exacerbation down so the cruise was a go.  About this time I got my mental shit together, and was fully engaged in the fight.  After the cruise I was back on (oral) antibiotics for 14 days.

 

We had a wonderful cruise, and managed to get thru the rest of the summer without incident.  My head getting better and better.   It is now towards the end of August, and my health had been edggie at best all year.  I had not had an opportunity to get my legs under me again, and was fighting one small battle after another. Thru this point in the year I had the services of a pic line for close to 75 days, and the year was only 2/3’s done. 

 

September and October were building up months.  I believe for the most part it had been a steady improvement.  But again in late October a pic line was once again installed to fight off another exacerbation without a hospitalization.   November and December were really uneventful health wise, the big decision during this period was to go ahead and have the Mediport installed, which took place shortly before Christmas.

  

For the year I was hospitalized 3 times for pneumonia, MRSA or a combination of both.  I also had at least 3 exacerbation which did not require hospitalization, but required a Pic line.  I had a pic line in-place for close to 90 days during 2013 for IV drugs to fight the bouts of Pneumonia and MRSA. 

 

Also during 2013 I started my relationship with Doc Head.  This has been extremely worth-while.  I didn’t have a clue just how much crap I had floating around in my head.  While I know I have made significant progress, I know there is more progress to be made.

For 2014, I swear I will not let my head get in the way of my fight against my illness.  I will be fully engaged in hanging in there all year.  

Folks thanks for sticking with me.  I hope you had a safe and wonderful New Year’s Eve, and are no worst for wear. I also hope that you have a great 2014. As always your thoughts, comments or concerns please feel free to let me know.  Take care, Bill

 
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Posted by on January 3, 2014 in How I feel on a particular day

 

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How I Feel Today 12.27.13….

Good day folks, I don’t know about you, but around here it has been very hectic to say the least.  Santa came, and NO I didn’t get a bag of coal or a bunch of switches.  Santa was good to me (as I sit here grooving to my ITunes and listening on my Dr. Dre headphones).  I truly hope that each of you had a wonderful Christmas filled with love and joy.

Over the last week I have had only one doctor appointment.  That was with Dr. N, the doctor who installed the Mediport.  On Monday the 23rd he checked his handiwork and was pleased with himself.  The incision point was healing very nicely, the swelling and bruising are all but gone, and with the exception of the little bump in my upper right chest you would hardly notice the Mediport at all.  There are no real scars to brag about, but I did get a nice bracelet out of the deal.  Oh and I did get easier access, no being stuck 3 or 4 times to draw blood, and some peace of mind, and a bunch of other little benefits. All this equaling why the hell did I wait so frigging long.  No bad at all.

So how do I feel today, for the week ending today (12/27/13), I will give myself a 3, it’s a good score, but it’s a reflection of the acclamation of a weeks’ worth of activity, the being tired that comes from it, the overdoing, and all the other holiday issues that pile up.  And I wouldn’t trade those activities for a 3.5 week.  Another reason for the 3 (cause I know you will ask) is my coughing has jumped to a higher level.  Mostly non-productive, but from time to time a chunk of slightly yellow crap will come up. Just enough junk to put you on edge.

Shortly after Thanksgiving a fellow blogger (Huntsmode, who has a great blog) and fellow sufferer of COPD asked a question I didn’t have the answer (yes I know, that’s a great surprise).  Hunts wanted to know what my Vitamin D level was.  I didn’t know, but I asked the follow-up question, “Why?” Hunts stated that had been Vitamin D deficient, and thru the use of supplemental Vitamin D, it has greatly improved her level of this vitamin.  She also stated it seemed to help her breath easier.  I am all for breathing easier, so I had my Vitamin D level checked and I too am deficient in this needed Vitamin.  I was going to provide a lot of filler here with an extended list of potential problems from a lack of vitamin D, but there is so much information available on line by checking vitamin D deficiency you can check and see if it reaches out and grabs you.  I know it did me.  One of the biggest problems with a Vitamin D deficiency is that it hampers you immune system, so you become susceptible to many other bugs that bite.  And for those of us suffering from COPD we don’t need any additional bugs finding ways to bite us.

In keeping with due diligence, I also called the Blue Cross Blue Shield health coach.  She provide a lot of significant info, but one of the most important pieces of information she provided was to call, my pharmacist for potential interactions of a vitamin D supplement with the other drugs you are be taking.   And before going a step further, if you are considering self-medicating, I cannot emphasis strongly enough DON’T – DON’T let me repeat DO NOT CONSIDER SELF-MEDICATING. Talk to your doctor, get his buy in, his support, and if he or she won’t, find out why, a doctor’s response like a simple “no” or “let me think on it”, isn’t really an acceptable answer.  You need to stand up for yourself, your voice needs to be heard, and he is being paid the big bucks so “no” (without an explanation) is not the right answer!!!  Anyway, back to the post.  My pharmacist has advised me that there wouldn’t be any interactions with any of the drugs I am currently taking.  She also suggested that I have my doctor provide a prescription for Vitamin D.  She went on to say that prescription strength Vitamin D is stronger and cheaper than over the counter vitamin D.

I hope that my friends that suffer from any disease think about having their Vitamin D checked, it is a simple test, and while it won’t cure you, it may make your quality of life a touch better, and we all want that.  But again, if you’re thinking about it, consult your Doctor.

So Monday December 30, 2013, I will be talking to Doc Lungs for the last time in 2013 and this will be one of the main topics of discussion.  We will also be checking my INR.  As you remember I was off blood thinners for 5 days before surgery last week.  So this will be the 1st time in weeks that my INR has been checked, and I am betting that it’s close to therapeutic (between 2 & 3).  The only other doctor appointment looming in my near future is an appointment with Doc Head on 1/6/14.

All things considered December has been an extremely good health month for me. I really don’t have any complaints.  I got thru the hustle and bustled of Christmas shopping with the masses without bringing home an unwanted gift.  We had a great visit with the Kids and an early Christmas where Cari can take full credit for ampping me up health wise with her wonderful nature, and her performances both in Choir and Dance. And a surprise visit from my brother-in-law. Most likely my next post won’t be until the 5th or 6th of January, and it is my intention to kinda do a year in review post.

As a totally random sharing of information since I started writing this weekly report I have listened to at least 5 cuts from the these artists; SRV, 3 Doors Down, Match Box 20, Eric Clapton, Nickelback and a bunch of single cuts from: The Allmans Brothers, The Kinks, The Byrds, The Animals, Rob Zombie, Depeche Mode, Marilyn Manson, Five Finger Death Punch, Van Halen, Seether and Theory of a Deadman.  So if this post seems disjointed to you, I blame it on the music.  I have been in the wayback machine all morning.  I have been lip singing, and playing air guitar to all these tunes, and I haven’t been typing. For those of you that didn’t know playing air guitar is an aerobic exercise.  I do thank God there isn’t a hidden camera in my office. Oh the potential for blackmail, have mercy on me. This is not the normal process for me writing posts. I am just saying. 

On to the vitals for the week.  Clearly lip singing and playing air guitar are good for the body and soul.  My O2 level is running right at 95/96 pct, heart rate right at 100 (normal for me), the weight still sucks, but I am back down to 280.  Blood pressure at Dr. N’s office on Monday was 117/62 pretty damn good if I say so myself.  Temp was low normal, 98.1.  So my numbers have been good. 

Folks thanks for sticking with me, and getting to the end of the post.  I hope you have a safe and wonderful New Year’s (key word SAFE).  Look for my next “How I Feel Today” post the 1st week of January 2014.  As always your thoughts, comments or concerns please feel free to let me know.  Take care, Bill

 
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Posted by on December 27, 2013 in How I feel on a particular day, Ramblings

 

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How I Feel Today 12.19.13….

Good morning folks, Only 6 more days until Santa comes to visit I hope you have been good little boys and girls, because Santa does know.  I am doing well today, and for the week I am going to give it another 3.5 week, I am still riding the efforts of my granddaughter.  We had given her some new bed linen (stuff only a little girl could love) and she did love it.  She called on Tuesday to thank grandma and grandpa.  All those years of teaching her mother manners has paid off very well. Cari is extremely polite, for which I am very proud of her.  So the combination of Cari, and just plain old feeling decent I will give the week a 3.5.  I have no pressing health issues currently, no bugs, no colds, no anything, knocking on wood, granite, tin, steel, whatever I can find to not jinx it.

 

A review of the week is quite simple. I had a vascular access port implantation on Tuesday 12/17/13. The procedure was simple from my point of view, but the hospital staff made it emotionally more difficult than it needed to be.  Pre-op preparation included coming off all blood thinner 5 days to surgery, because I have MRSA inhabiting my lungs and nasal passageway I had to swab my nose 3 times a day up to and thru surgery day.  In addition I had to complete 3 skin cleansings prior to surgery.  Apparently using a bar of soap and a washcloth just doesn’t do the trick.  So 3 days prior to surgery I had to use a 4% chlorhexidine antiseptic soap, in addition to my normal shower routine.  Again, no big deal just a minor PIA.  

 

We were asked to come to the hospital at 11am for a 1pm scheduled surgery.  The day before (12/16/13) we were called to come in even earlier because most likely my surgery was going to happen ahead of schedule.  We showed up as requested, and were rapidly moved into the surgical unit were I was prepped for surgery.  Vitals at the time of surgery were BP 125/68, O2 98% (they had me on 3 lpm) heart rate 103, and weight to friggin much (283), Then I was told they would be there shortly to brief me on the surgery and then wheel me into surgery.  Total time at the hospital 20 minutes, it was now 10:40am.  We did not see a soul nor did anyone talk to us for the next 90 minutes. Finally after waiting those 90 minutes I hit the call button, a nurse showed up (bringing her attitude with her) and told us that sometimes surgery takes longer than expected but I was next so just be patient.  She put her nose in the air and walked away. After sitting for another hour, I once again called for an update, and another nurse with a crappy attitude showed up and listened to me rant for a minute and left “saying she would get the unit manager,”  My wife who is a lovely lady has just about zero patience, and has even less of a tolerance for B S than I do (and I don’t tolerate it well at all).  She was fuming and getting ready to unsurgerically remove someone ass LOL.  She turned to me as said “Honey the nurse said she would get the unit Mgr in to advise us.”  I had to tell Steph that getting unit Mgr in was nurse speak for just blowing us off.  Which put Steph on a different plane.  But 10 minutes later my doctor came by and advised us that there had been some difficulty with the prior patient, and it could take 30 or 45 minutes to get that patient stabilized and then it would be my turn. Time now 2:15pm.

Mediport Pic 1

At approximately 2:50pm the surgical nurse and the joy juice Doc came to get me.  We had a very strong conversation that she was not going to put me to sleep. Apparently she came into this thinking she would.  But after a few minutes discussion, she realized I was to be given a strong local, and just enough joy juice to keep me calm during the procedure. At 2:59pm I was on the operating table and they soon started my procedure, I was talked to almost continually during the operation. I felt no pain, I felt a little tugging when I was being stitched up (only 4 stitches), and by 4:00pm I was back in recovery alert, sitting up, and drinking apple juice. At 5pm we were in the car headed home, and by 6:30 dinner was served, I even helped clean up after dinner. 

 

Wednesday am I drove myself over for my monthly IVIG treatment.  They were tickled to death having the Mediport, and it was put to the test immediately.  There wasn’t a single hitch.  One tiny stick is all it takes, and within minutes the infusion begins.  Very very convenient.

 

I have only 1 doctor appt next week, and that is a follow with the Doctor that installed the Mediport. I will be seeing Doc Lung on the 30th for an INR checkup, and won’t be seeing Doc Head until January.

 

Well folks that about wraps up this week’s How I Feel, and I will be posting it a day early surprise surprise.  It has been a good week on many levels, and I have learned things, and that is always good. 

 

New week is Christmas, and I would like to take a moment to wish each of you a very Merry Christmas.  I truly hope the holidays bring you nothing but joy and happiness, as you have brought to me this past year.   

 

Thank you for your continued good thoughts, and as always your comments welcomed are encouraged – Please take care, Bill

 
18 Comments

Posted by on December 19, 2013 in How I feel on a particular day

 

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He’s Aliveeee ! ! !

Folks,

This is just a brief note to say thank you for the well wishes, I had my Mediport installed today.  It was minor outpatient surgery, but there is always drama.  Later in the week I will post my normal “How I Feel Today…” and give a rundown/rant about the process.

But is just to let you know I am fine, and it wasn’t any big deal.

Take care, Bill

 
22 Comments

Posted by on December 17, 2013 in How I feel on a particular day, Ramblings

 

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