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How I Feel for the Week Ending 08.08.14

I missed posting last week, because I was busy and was putting it off, and didn’t really have anything of substance to address. Hell I don’t know why that stopped me, there are lots of weeks I don’t have anything of substance to report but I do anyway.  Today’s music selections start with Toby Keith’s “Blue Bedroom,” and yes you will get a running commentary of the music during this report.  My last reported dated 7.25.14 spoke of the upcoming invasion of my wife’s good friends.  Well they have come and gone, and a wonderful time was had by all.  It wasn’t as difficult as it could have been, and I wouldn’t have missed their visit for any reason.

It has been a particularly trying 2 weeks since my last report breathing.  The heat, the humidity, has caused a constant issue with SOB.  As for breathing the only time I really have felt comfortable at all is just sitting on my ass, but I refuse to do that.  I have managed to keep up with (my self-imposed) chores, and I have stopped and taken breaks when I needed them, which really has been often.  There has only been a very slight increase in coughing the last couple days.  But that cough has been for the most part very unproductive.  The IPod random selector has been in strange mode today, I started off country, and have had 3 selections from Lewis Black (my favorite comedian) intermixed with Jimi Hendrix, Journey, CSN and Aretha Franklin.  These shifts in music really change the pace of my head LOL. Yet at the end of the day when I am brushing my teeth I will have a massive coughing spasm, which is extremely productive.  It’s almost like a pre precursor to an exacerbation, and while I am not down playing the significance of the words, I am not ready to race around shouting the warning.  But I am keeping a very sharp watch.   The only other ongoing medical issue is that I have had a super low grade headache for what seems like weeks.  It is more an annoyance than anything.  It doesn’t worsen in the bright sunlight, and being in the dark makes no difference and playing my music loud has no impact.  It’s just there.  Yes I have advised Hospice and my team of doctors, no one seems overly concerned because by my own admission other than a tiny bit of annoyance it’s not a problem.

I had only one medical appointment this week which was with Doc Head. Without going into a single detail, we talked, and it was good.  Oh what the heck, we talked about my Blog. Last week I was stood up by Hospice.  The nurse that comes to my home weekly and checks me had advised me that she wouldn’t be coming last Thursday, BUT I would be visited by Hospice.  Well that didn’t happen.  So after a stern talking to this morning I was advised that in the future, if I haven’t been contacted by Hospice in a timely fashion regarding an upcoming “scheduled” visit to call them and put them on the spot.  I am quite capable of doing that, and in the future I will abide to this unless circumstances beyond my control prevail. 

I will also admit I am relying on the Morphine for the relief it gives for my SOB.  I have yet to use the maximum of 6 doses on any given day, but will admit that there are times I look forward to that next dose. 

Considering everything available to me, 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. Sidebar; we have been listening to Billie Holiday, Moody Blues, Montgomery Gentry, Nickelback, Cream, Eric Clapton (playing blues), Ray Charles and Muddy Waters during this session. As for my mental attitude I am a 9 this week.  I woke up each day so far, and have found more reasons to smile than frown.  It is difficult to be better than that.

So to wrap up week ending 08.08.14, we are ranking the week an overall 2.5, with a 9 on the attitude scale.  So we can move on to the vitals for the week ending 08.08.14

  • INR = 2.6 taken 07.28.14 – no change in meds

  • O2 level @ 2.5 LPM = 95 taken 8.07.14 — but during the last 2 weeks I have found myself to be as low as 79 pct a few times.  A few deep breaths and some afrin seem to clear things up and my O2 level jumps back into the 90’s

  • Peak Flow = 210 taken 8.07.14

  • BP = 110/64 taken 8.07.14

  • Heart rate = 95 taken 8.07.14

  • Temp = 98.5 taken 08.07.14

  • Weight = 263 taken 08.07.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08.08.14, moving now to the word of the week discussion aspect. This week I will be giving my 2nd official report on the Hospice “experience.”

On June 1, 2014 I posted my 1st official report on being under the care of Hospice.  At the time I advised that it wouldn’t be a regular weekly report but one that I would share from time to time. Going into my 6th month under the care of Hospice I thought I should provide a view from the front row.  Since my involvement with Hospice there has been only 2 weeks where someone from Hospice did not visit my home.  One was planned, the other I fell thru the cracks.  I am sure if I were displaying serious signs of illness I wouldn’t dropped thru the crack.   Folks shit happens and sometimes the best laid plans don’t work.  I was busy last Thursday and them not visiting allowed me to get other things done.    That is my biggest gripe.  Not bad for a 6 month period.  Now on to the nuts and bolts of this report.  Each week I can expect to be contacted by Hospice at least twice.  One is a call that comes in around 930am each Thursday.  This call is a medicine check.  I am called by a cheerful volunteer that gathers the needed info and passes it on.  The reason for the Thursday morning call is that allows Hospice time to fill the medicine, and deliver it to my home by 5pm on Friday.  They make 2 attempts to deliver each Friday then they will call you until they contact you, and then make the delivery.  I know this because I am so anal and I will call for a prescription refill before it is needed. I will make the refill request even if I have plenty to get thru the weekend.  So getting the delivery is not an issue as long as I have it by Monday or Tuesday at the latest. While it may not be an issue to me, it sure is to them.  If I say I need meds it becomes their mission to get me the medicines before COB (close of business) on Friday.  They are always supper polite, and I have never been asked if I can wait until Monday.  There is only one place I get better service that’s my Publix Pharmacy, but Publix makes me pay, and they don’t deliver so it becomes a push.  The 2nd call is my nurse scheduling my weekly visit.  This visit consists of my nurse taking my vitals, and “chatting” with me, I am sure part of the chat is to check the status of my head.  Clearly (at least to me) they are checking for signs of depression, or negative drug reactions, making sure I haven’t fallen, that my mobility isn’t an issue, and probably several more little things I haven’t quite figured out.

Each month I am also called and visited by a counselor, again to check me out.  Offering to have volunteers come in to do chores around the house, to do some grocery shopping for me, or just to sit and visit.  So far I have passed on these offers.  As I have stated before I can still manage my chores they take far longer, but I still get them done.  I go to the grocery store 3 or 4 times a week to pick up odd and ends, and to flirt.  I also use the aisles as my exercise area, pushing the shopping cart up and down up and down up and down. I can only walk by the ladies hygiene area so many times before management watches LOL LOL. JUST KIDDING!!!.  But those trips to Publix are therapeutic.  My best buddy Art comes over at least twice a week to BS and play cribbage.  While I appreciate the offered services, until I absolutely need them I will manage on my own and with the support of my wife, family and friends.  Sidebar; it has been an extremely interesting day of music, with some comedy thrown in.  I am especially tuned to the head banging music of Marlyn Manson followed immediately by Reba McIntire, that may account for why some of my post seems disjointed.

I have yet to use all the offered services that are available to me from Hospice, but as time passes and my condition changes I am sure I will have my opportunities.    So far I have only spoke to those things I have 1st hand knowledge of, if you have a question please feel free to ask.  I will find out and let you know how it would be handled by these folks if or when I need that service.

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 07.05.14…   

Folks, I hope you successfully survived the three “F”s food, fireworks, and fun that come in abundance on July 4th.  As for me, it was as quiet as it could be.  The neighborhood fireworks started around 3:30pm reached their most intense time around 9:30pm to 10:30pm with some of the longer fuses going off from time to time all night and still this morning. First sidebar, the music is pure random today, we started with Aretha Franklin, followed by George Thorogood Reba McEntire,  and now Brooks and Dunn, so it’s sound like we have the potential for a Country Music Morning. It is approximately 1015am my brother-in-law just left after a 2 day visit, which I thought was going to be longer.  He’s a good guy and we have been friends as long as I have been married to his sister.  So clearly I am getting a late start but I promise this will be in your inbox no later than tomorrow afternoon, it has been miserably hot and humid this week, with that being broken up yesterday. The pool temperature has climbed to over 90, so it isn’t nearly as refreshing as anyone would like.  If the pool vacuum worked a touch better I would have a 9,000 gallon hot tub. LOL LOL.  But I know you’re not reading this for the weather and pool report.  The heat and humidity have played hell with me this past week, and my scheduling seemed to have me out and about during the worse part of the day, so physically I have been drained all week.  Of course coming with that is a harsher SOB.  Still folks all things considered I am going to give myself a score of 2.75 for the week.  No I don’t feel as good as I want, but I sure as hell don’t feel as bad as I could. So once again it is a 2.75 score for the week.  Last week I posted a length to an award this blog was given, and many folks contacted me and said the link didn’t work.  I am going to try one more time to make it available, because I am kinda proud of it.  

http://www.healthline.com/health-slideshow/best-copd-blogs 

Once there just scroll thru until you come to page 14 that would be me.

Last week I spoke of the need to pace myself, and as the summer wears on that is more and more evident.  I think this is something that each of us who suffer from a respiratory disease need to keep in mind. But this holds true and goes way beyond those who are ill. Smiling, take a look around you, see that cranky child, I rest my case. LOL.  This is what heat and humidity do to you, and ME, brings out our inner child. Sidebar; we have moved on to Jimi Hendrix, Garth Brooks and Freddy King, being on full random, well just be ready for surprises. So folks, I just wanted to remind you that you’re not invincible.

I had only 1 doctors’ appointment this week, that was to have my INR checked, and that was 2.3 well with the therapeutic range, the next check will not be until July 28, 2014. On the 3rd of July I hand my weekly visit with the Hospice nurse, that went well, and per normal that took about an hour. I still haven’t goofed on the nurse when she asked me “what do you miss” question, without thinking I give her an honest answer. Next week I see Doc Head on Monday and that’s it for the week. I have no, none, nada, appointments until the 16th; I may go into Doctor withdrawal, if am not careful. 

Let get the vitals out-of-the-way for the week ending 07.05.14 

  • 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 7.3.14

  • Peak Flow = 215 taken moments ago, 7.5.14

  • BP = 110/60 taken 7.3.14

  • Heart rate = 96 taken 7.3.14

  • Temp = 98.5 taken 07.3.14

  • Weight = 265 taken 07.5.14 

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.05.14, moving now to the word of the week discussion aspect. This week I have chosen forgive/forgiveness as the word of the week. As I normally do I will start with the dictionary definition for the word.  

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

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

forgiveverb(used with object), for·gave, for·giv·en, for·giv·ing.  1. to grant pardon for or remission of (an offense, debt, etc.); absolve.  2. to give up all claim on account of; remit (a debt, obligation, etc.).  3 to grant pardon to (a person). 4. to cease to feel resentment against: to forgive one’s enemies.  5. to cancel an indebtedness or liability of: to forgive the interest owed on a loan.

forgivenessnoun 1. act of forgiving; state of being forgiven. 2. disposition or willingness to forgive.

Two weeks ago I spoke at length about anger, and how one needed to avoid at all costs saying those things that can’t be unsaid. To avoid saying things that “sorry” can’t fix.  Having been that angry at times during my life, and having someone be that angry at me, I could speak from experience, and I suspect that many of you have said things or had things said to you that clearly would have been best served not being said at all.  In  my earlier post I had concluded that anger came as a result of really not thinking, but verbally exploding.

This week we are going in the other direction.  We are going to discuss the act of forgiving.  As rapidly as angry comes upon a person, forgiveness seems to take forever and a week.  The words those terrible words dig deeply, and they fester, they rattle around, and they don’t fucking go away.  Sidebar; I just went from AC/DC to Lewis Black to Sarah McLachlan to Stone Temple Pilots, random play makes for strange bedfellows. In time the pain begins to lessen but it rears its ugly head at the most unexpected moments.  Your brain flashes like a strike of lightening, and there it is again that unrelenting anger, and there you are again mad as hell.  It’s because forgiveness has not started, you think you have forgiven the person, and 99 pct of the time the actions are long gone, but a look, a grunt, a condescending smile, can cause it to rush back.  I had always thought that forgiveness was a natural trait, it just happened, but I have been so wrong.  You really have to work at forgiving; the action of forgiveness seems to be multi-step.  And through it all the individual responsible for the anger has to help you forgive, and even more importantly you have to allow them to help you forgive.  You have to stop harboring the thoughts that angered you originally.  You as an individual have to make a conscious effort to forgive, but the very first step is getting over it.  The definition above for “forgive” especially number 4, really seems to be the key.  For forgiveness to begin you as an individual must “…cease to feel resentment against.”  Sometimes this takes much longer than you expect or anticipate.  And this is by no means perfect. But it is a place to start.  The definitions for “forgiveness” really seem to define what one must go thru to forgive.  The second definition “disposition or willingness” means a real action has to be taken on your part.  Unlike how naïve I have been, thinking forgiveness is a natural event; in reality it only becomes natural thru a significant effort.  Smiling there is a life lesson here someplace.  It would be apt but appropriate to say practice makes perfect when it comes to forgiveness.

I am also saying that those of us with a terminal disease really need to work on these skills now, because we really don’t have time to wait. Oh you healthy folks need to pay attention to this as well, just because you think you have more time, doesn’t make it so.  Besides enough of you healthy folks have said time and time again, “Oh, I could die tomorrow.” Well maybe you might, so pay attention. I for one can’t see any good that can come from taking a lot of anger to the grave with me.  Having no experience at dying (thankfully) it seem so counterproductive to harbor those feeling of rage, anger or angriness to the end, and it is my intent to be free of them to the best of my ability before I go.   I can’t help but feel it will make the transition to end of retirement easier for me and those I love and care for.

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 6.20.14…

The modified title to this is “for the week ending 6.21.”  I had absolutely no chance to start my weekly report until this morning I was being grandpa 24/7 for the last three and half days.  If I appear to be a touch more stupid than usual that is the direct impact of an overdose of the Disney Channel.  Speaking of the Disney Channel, if we want the terrorist to willingly give up significant information, forget waterboarding, just tie them to a couch with a 9-year-old and the Disney Channel, I doubt if even the most hardened of terrorists could last more than 30 hours.  It is just a suggestion.  Anyway moving on to the weekly report, BTW we have had 8 inches of rain at my house over the last 6 days, and during those same 6 days half the time were as advertised beautiful Florida days. Today our music selections begin with “Grind” by Alice in Chains; I suspect this is going to be a mixed bag kinda of day music wise. I am maintaining a constant 2.75 score for the week.  Some days were as high as 2.9 others as low as 2.2 but the week was a solid 2.75.

It was a slow week for grilling, so I had no smoke issues.  It is quite surprising how this weekly report has grown to include a weekly weather report and cooking show. LOL But what is even more strange is that both the weather and cooking do have an impact on my overall health.  I am equally sure it has an impact on yours but you just notice it less than I do.

Monday and Tuesday were important Doctor appointment days.  On Monday I had my annual breathing test.  There is no easy way to say it, lung function has dropped my FEV1 is 31 percent (FEV1 = the amount of air which can be forcibly exhaled from the lung in the first second of a forced exhalation. Measuring FEV1 is done through spirometry testing which helps your doctor determine your lung function.)  The little chart here kinda explains it best.

  • FEV1 greater 80% of predicted= normal

  • FEV1 60% to 79% of predicted = Mild obstruction

  • FEV1 40% to 59% of predicted = Moderate obstruction

  • FEV1 less than 40% of predicted = Severe obstruction

This is down from 38 percent from last year. When I do the math it appears I have lost about 20 percent of “my” capacity in the last year.  Smiling it further means I just have to ensure I keep my ass out of the hospital. LOL.  Having said that I did knock on wood.  So that was Monday.

On Tuesday I had my monthly IVIG treatment that is the 5 hour infusion I get monthly which supports and jacks up my immune system.  This treatment continues to work and keeps my immune system functioning in the low normal range, which before I started this treatment 2 years ago was off the chart low.  During my infusion I took a meeting with Doc Infectious (actually my 3 month follow-up), which was little more than a glad hand meeting.  He introduced me to young man who was interning.  Doc Infectious gave him a 20 minute talk about my illness, his involvement in my treatment for the last 3 years, the lack of available drugs to fight the infections in my system, my awareness of the disease, and that I was one of a very few patients that there were standing orders for treatment should I show up after normal business hours complaining of symptoms, thus being able to avoid a trip to the ER.

On Thursday I had my normal in home appointment with my Hospice nurse.  Smiling, as she sets up her computer and connects to her portable server, the first question she asks each week is “What do you miss this week?”  My answers have all been honest with me generally saying I miss golf, bowling, or some other physical activity.  I know this is a psychological question to test my mental attitude, and my answer probably evaluated, charted and over analyzed.  So I think I am going to mess with the chart.  Maybe answer fried chicken one week, and rhubarb pie the next, maybe county roads, and such over the next few weeks, just to mess with them LOLSidebar: well just to let my friends in Canada know, I have heard a lot of Nickelback this morning, as well as, Linkin Park, Tom Petty, Led Zeppelin, Five Finger Death Punch, Vince Gill, and Travis Tritt so far this morning.  And it has only just begun.

Now for the broken record part of the weekly report, my general health remains approximately the same. The coughing is about the same, tiredness seems normal this week; SOB normal (which means all the time)  I normally bitch a bit about my sleeping issues and with sweet granddaughter here they are interrupted a little more than normal but that’s okay and kinda expected, even though she has slept her countless times, we tried something different this time and put her down in her room, well at 3 am she “was scared” and joined us, which meant at 315 I was kicked to the floor and ended up on the couch.  Problem solved the next night I was in the guest room LOL.  It all worked out.   But I did miss my naps LOL.

Let get the vitals out-of-the-way for the week ending 06.20.14

  • INR = 3.0 taken 06.16.14 – next test will be 06.30.14 – but no change in meds

  • O2 level @ 2.5 LPM = 95 taken moments ago, I have been instructed by Doc Lungs to set my supplement oxygen to 3 LPM when I am out and about.

  • Peak Flow = 220 taken moments ago

  • BP = 98/61 taken 06.19.14

  • Heart rate = 94 taken moments ago

  • Temp = 98.2 taken 06.17.14

  • Weight = 270 taken 06.17.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.20.14, moving now to the word of the week discussion aspect. This week I have chosen “Anger” as the word of the week. As I normally do I will start with the dictionary definition for the word.  But lucky you, you get to 2 definitions for the price of one, because Anger forces you to angry, so for full exposure excuse me I meant disclosure LOL you get angry as well.

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

an-ger – verb – to make (someone) angry

Full Definition of ANGER — transitive verb =   to make angry (he was angered by the decision) — intransitive verb =   to become angry

Examples of ANGER = 1) They were shocked and angered by the company’s arrogance. 2) He was angered to learn that he had been fired. 3) It angered me that she would say something like that. 4) He’s a gentle man who’s not easily angered.

First Known Use of ANGER = 13th century

Go to the link provided here if you want to see all Webster has to offer on angry.

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

Sidebar; we have been listening a to selection by Linkin Park “Burn it Down,” but we have also heard some Stone Temple Pilots, more Alice in Chains, more Nickelback, Depeche Mode, Shinedown, Seether and one of my favorite songs of all time by Gemini Syndrome “Stardust.”

Being ill is a constant emotional roller coaster, but when you’re ill you have a very real tendency to not fully realize the impact your illness has on others; be it loves or lovers, relatives, friends and even acquaintances. We touch so many folks in so many ways. But as humans we seem to find so many ways to under value the impact our lives have on others.  As I write this I realize I am quite guilty of this but, in my defense I am getting better.  This impact touches all of the emotions and I have chosen anger to talk about today.

Anger is a magical emotion, because you can talk to a thousand individuals and won’t find 2 that describe it the same, you won’t find 2 with the same hot buttons, and rarely do you find folks that will admit that what one person says or does has no impact at all, yet if another person does that same exact thing in the exact same manner, it make them so angry their rage is blind.  Expressing anger makes a person just plain stupid.  Just like how Love can make you just plain stupid, of all the emotions, these two have the most dynamic impact on one’s personality.  Anger makes you say things that have no truth in them at all; it makes you say things that you would never say at any other time (including being drunk).  Anger will make you say the most hateful of things that you can never completely take back. The sad thing about anger is the word sorry doesn’t always fix it.  I suspect some of you are wondering why is he yakking about anger and how does it relate to the terminally ill.  Soft smile, of course you know why, even if you won’t admit it.  Sometimes the terminally ill get angry for no particular reason at all, they mumble, they cuss, they stomp, and it is generally pointed at someone who is completely innocent, somewhat innocent, or not innocent at all. We will say things we never intend on saying, at the most inappropriate of times. Yet sometimes though we flare up and explode for a very definitive reason/s, or in response to the words or actions of others, which could be any of those I listed above.  But sometimes anger is the right response, and the words said are the right words.  It took the emotional outburst of anger to free the words, the actions.  I am not saying that this is good I am saying it might sometimes be right.

The point I believe I am trying to make is that if your terminally ill, or if you are the spouse, loved one, family member, friend, caregiver, of someone who is terminally ill, you more than likely have such an encounter.  Hell you can for that matter take the terminally ill out of the equation and it still applies.  Try and do the impossible, try to keep your head about you during your outburst or response to an outburst. Try your best to not say something that can’t be fixed with the word sorry.  None of us ever want to walk around going “damn, I wish I hadn’t said that, but I was so angry.”

I have looked at this, and read and reread and I am kinda comfortable with it, and kinda not comfortable.  The bottom line is for everyone, if you have a shred of reason left during a heated discussion, try not to say those things that can’t be taken back or fixed with the word sorry.  And it really matter not, if you’re sick, or terminally ill or healthy as a horse.  In anger try to say things that won’t bite you.

This has gone on way longer than it needed. 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 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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How I Feel for the Week ending 3.28.14… (sorry for delay)

The week ending 3.28.14 has come and gone, and it 725am on Sunday morning. But I am going to write this as if it were still Friday the 28th of March.  So the crushing defeat of the University of Louisville to the damn WildCats of Kentucky will not play in the assessment of my health for the week.  As I have been stating the SOB (shortness of breath for my new readers) is the dominant factor in how I evaluated my health in recent weeks.  Given that I will rate the week a weak 2.75.  This week has been particularly stressful mentally and therefore physically (which makes stress the word of the week). Sidebar musically we will start with the Allman Brothers Band “Statesboro Blues.”  

Last week I gave my health an overall rating of a solid 2.75, even with the stress of the week, I am only going to downgrade my overall health to a weak 2.75.  All things considered even considering a visit to my Dentist the week still gets a 2.75.  Last week I didn’t complain of headaches or any other aches and pains, this week again no out-of-place difficulties that I can define.   Also last week I briefly discussed adding the mental health factor into my weekly assessment, I am still noodling this around.  The more I think about the mental component of one’s health, the more I see the validity of addressing it on a regular basis.  I am pretty sure I can say, and that you would agree, a happy head helps the body stay happy. Sidebar, of course we had to have some Nickelback, so “Next Contestant” is blasting away.  

Last week I touched on attitude does help carry the body thru difficult times, but please don’t think for a second that I advocate attitude over medicine.  But a great attitude and good medicine is a very difficult combination to beat.  I truly believe this and as I said last week “My attitude has carried the load, and has allowed me to press on.”  This also bears repeating from last week “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 03/28/14

  • INR = 2.0 taken 03/24/14 – level is therapeutic no changes in dosage
  • O2 level @ 2.5 LPM = 95 taken on 03/30/14  
  • Peak Flow = 225 taken 3/30/14
  • BP = not take recently enough to chart
  • Heart rate = 98 taken 03/30/14
  • Temp = 98.6 taken 03/30/14
  • Weight = 272 taken 03/30/14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 3/28/14, moving now to the word of the week discussion aspect.  This week I have chosen Stress, for two reasons, one I have been under a ton of it this week (this was the prime reason) and 2 one of my good blogger buddy’s wrote a post about stress.  I have not read her post or commented yet so while we listen to some “Big and Rich,”  I am going to read and comment on her post.

There is the text book definition of stress.  Taken from: http://dictionary.reference.com/browse/stress

Origin:
1275–1325;  (noun) Middle English stresse,  aphetic variant of distresse distress; (v.) derivative of the noun

Stress as a Verb

verb (used with object)  1. to lay stress on; emphasize.  2. Phonetics . to pronounce (a syllable or a word) with prominent loudness: Stress the first syllable of “runner.” Stress the second word in “put up with.”  Compare accent (  def 18 ) . 3.to subject to stress or strain. 4. Mechanics . to subject to stress.

verb (used without object) 1. to experience stress or worry: Don’t stress about the turkey; I promise it will be delicious. Dad is always stressing out over his job.

Stress as a Noun

noun 1. importance attached to a thing: to lay stress upon good manners. Synonyms: significance, meaning, emphasis, consequence; weight, value, worth. 2. Phonetics . emphasis in the form of prominent relative loudness of a syllable or a word as a result of special effort in utterance. 3. Prosody . accent or emphasis on syllables in a metrical pattern; beat.  4. emphasis in melody, rhythm, etc.; beat. 5. the physical pressure, pull, or other force exerted on one thing by another; strain.

The soundtrack has moved on just like time, we now have some Toby Keith playing “Beer for my Horse” which is a great tune and you can check it out on UTube, BTW as you can tell I have been all over the juke box today.  Okay back to the subject at hand “STRESS.”  Last Saturday my wife and I left the house briefly to go pick up a pizza.  We walked out of the house with the washing machine starting a load of laundry; we were gone for 25 minutes.  Now think about your home, ours is a single level.  Went we came home we saw water coming from beneath the garage door.  Stress level went to Decon 3, as the garage door opened, the water cascaded out, DECON 4, my wife jumps out of the car, races into the house and the utility room is flooded, the water is working its way down the hall, the water has seeped into the dining from by going under the wall, DECON 5 and we are at war with the water.  Within 2 minutes of coming in the house the water was shut off, but the damage done.  I spend Saturday evening thru Friday evening talking to the water cleanup company, our insurance company, the claims person, the folks that checked the washing machine 2 weeks prior to the accident, the insurance company lawyer, and the insurance company contractor who will repair the damage.  Not to mention the many levels of scheduling I had to do.  My day and week went from ho hum, to pulling my hair out stress.  It didn’t impact me, I really didn’t feel much, for 30 years I worked in that type of environment, it really had no impact on my head at all, and actually it was like old home week.  But my breathing took a beating, each day the situation, the calls, the meetings, the calls from the wife wanting updates, all played a part and my breath got shorter and shorter, by the weekend I was having issues pushing air.  That my friends is a clear result of stress.  Mentally it was no challenge, physically it abused me.  

In response to my friend’s post I wrote in part the following: “I really think it is in the makeup of the individual, their soul for a lack of a better term, in how an individual deals with stress.   Taking your example a touch further if those same two individual encountered 10 identical “stressful” situations, that there is a good chance that you could get completely different reactions from the individual depending on which situation occurred.  In some cases neither of the individuals would be affected at all, while in others both could react the same way.

To further muddy up the water, I feel that in addition to an individual’s soul an individual’s environment plays a significant role in how they react to a “stressful” situation.  Life experiences, age, sometimes their sex may have an influence, but these are all just contributing factors.

In the past year you have been pulled in so many directions, you have had so many outside influences impacting you and your world.  It is easy to see how stress can impact you.  It is easy to see how some influences impact you more than others.  And for all of these reasons it is easy to see how you could react differently.  But your own answer is clearly one of the keys “Perhaps the answer to the stress question is this:  Accept what is; make the most of every single hour of every single day; and get back on that bicycle!” “

If you notice not once did I mention the physical impact stress has on an individual, I spoke at length to the mental component but again failed to get into the physical.   It wasn’t until I came back to this post and start writing again did it dawn on me the very real impact that the stress of dealing with washer issues had on my body and my ability (or lack of) to breathe.  But my friend didn’t address how stress had physically impacted them. But you can bet in the future I will pay closer attention to stress as it relates to my breathing.

I really didn’t answer a question, I just put this out for thought, maybe as a reminder to all of us, that when we are in a stressful time not only is our head affected but so is our body.

Trust me a lot of music has played since I started this, but it has gone on long enough, so no more sidebars today on music. 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 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 01/24/14….. 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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How I Feel Today 01.18.14

Good day folks this is my weekly report for the week ending 01/18/14.  I will rate the week a solid 3.  It has been a good week overall.  Thankfully when I left Tampa to go to Atlanta the temperatures here were close to the temps in Atlanta, and coming back because of a cold snap the temps in the Tampa area were close to those in Atlanta, allowing me to forgo the burden of adapting to massive changes in temperature in short periods of time.  I will talk more about the trip and travelling alone in a bit, but now is the time share as I do my current medical situation.  I really am doing fine.  I have a continual nagging cough in the am and pm, which I will attribute to the Mucinex I take twice daily.  The sole purpose for this medicine is to break up the crap that resides in the bottom of one’s lungs.  The TV commercial for Mucinex is probably one of the best animated shorts that truly represents what this medicine is all about.  It makes you cough that crap up. Those of us with diminished lung capacity truly appreciate having whatever additional space we can acquire in our lungs and coughing this crap out really does have an overall positive impact on your lungs. 

BTW — crap is a medical term for the shit in my lungs. 

I have been sleeping well (all things considered) especially for me.  I have little aches and pains but I am 64 and I have not lived a stellar life, and even if I had, I suspect the aches and pains I have come standard, with the package, and I am okay with it.  I do haves some chest discomfort, but this has been addressed with my Heart Doctor, and he is okay with it, again it seems that lots of folks have some level of discomfort in their chest.  My is extremely brief and happens when I awake in the morning.  I guess I will start to really worry about it the morning I wake up and don’t have it.

Vitals on 01/16/14

Blood Pressure         110/66

Temperature             98.1

Heart Rate                103

O2 Level                   94/95

Last PT/INR              2.1

Weight = to friggin much but less that this time last week

I spent the earlier part of the week in Atlanta Ga.  I drove up on Monday and returned and Wednesday, round trip over 1,100 miles. I travelled alone, stopping as necessary, and functioning as anyone else.  It was easy; the only PIA was all the crap one has to travel with. But having whined about it, if you make a list check and it twice, and pack accordingly, it really isn’t that big a deal to travel alone with COPD.   I guess the single most important thing about it is letting people know you’re doing it and checking in periodically.   Having COPD does not confine you to the Den or Living room.  It doesn’t mandate that the longest trip you can make is to the doctor’s office, it really doesn’t.  It takes a little courage, and a good bit of planning.  And after you do it 2 or 3 times, you stop fretting and get on with your life.  Besides normal packing, the things I took for me for this trip included: a week’s worth of medicine, both my portable concentrator and the one I use in home, my nebulizer and Cpap machine.  I try to pack all medical stuff in one bag, cloths in the other.  When I check into the hotel, I generally get one of the hotel staff to help me get the crap to the room.  Once there I am setup in 10 minutes and then let the visit begin.  I do nebulize before leaving the room, and I do carry my next dose of medicine with me.  Really pretty simple, and the joy of being out and travelling and being independent makes me feel great.  Enough on this subject.

 

This week’s word is M R S A. Over the last couple years I have said that while I was in the hospital with pneumonia, that I was also battling MRSA. I don’t believe I truly defined what MRSA is or the impact it has to the body.  Hopefully this will help those that need a deeper understanding.  I am going to start out with “book” definition of the term. Because I will be talking about MRSA today, I am taking the info from:  The U.S. National Library of Medicine (NLM) the world’s largest medical library. Its electronic services deliver trillions of bytes of data to millions of users every day.

The NLM was founded in 1836 and is part of the National Institutes of Health (NIH) in Bethesda, Maryland.

I have edited the information provided by NLM for the sake of the blog, the complete reference material can be found at this link:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004520/

MRSA

Methicillin-resistant Staphylococcus aureus; Hospital-acquired MRSA (HA-MRSA) MRSA stands for methicillin-resistant Staphylococcus aureus. MRSA is a “staph” germ that does not get better with the first-line antibiotics that usually cure staph infections.  A.D.A.M. When this occurs, the germ is “resistant” to the antibiotic.

Causes, Incidence, and Risk Factors: Most staph germs are spread by skin-to-skin contact (touching). A doctor, nurse, other health care provider, or visitors may have staph germs on their body that can spread to a patient.

Once the staph germ enters the body, it can spread to bones, joints, the blood, or any organ, such as the lungs, heart, or brain.

Serious staph infections are more common in people with a weakened immune system.

MRSA infections can also occur in healthy people who have not recently been in the hospital. Most of these MRSA infections are on the skin or less commonly lung infections.

Symptoms: It is normal for healthy people to have staph on their skin. Many of us do. Most of the time, it does not cause an infection or any symptoms. This is called “colonization” or “being colonized.” Someone who is colonized with MRSA can spread MRSA to other people.

A sign of a staph skin infection is a red, swollen, and painful area on the skin. Pus or other fluids may drain from this area. It may look like a boil. These symptoms are more likely to occur if the skin has been cut or rubbed because this gives the MRSA germ a way to “get in.” Symptoms are also more likely in areas where there is more body hair due to hair follicles.

MRSA infections in patients in health care facilities tend to be severe. These staph infections may be in the bloodstream, heart, lungs, or other organs, urine, or in the area of a recent surgery. Some symptoms of these severe infections are:

  • Chest pain

  • Cough or shortness of breath

  • Fatigue

  • Fever and chills

  • General ill feeling

  • Headache

  • Rash

  • Wounds that do not heal

Signs and tests: Your doctor may order a “culture.” This is a sample from a wound, blood, urine, or sputum (spit). The sample is sent to the lab for testing. This testing can take a few days to finish.

Treatment: Draining a skin infection may be the only treatment needed for a skin MRSA infection that has not spread. A health care provider should do this procedure. Do not try to pop open or drain the infection yourself. Keep any sore or wound covered with a clean bandage.

Severe MRSA infections are becoming harder to treat. Your lab test results will tell the doctor which antibiotic will treat your infection. Your doctor will follow guidelines about which antibiotics to use and look at your personal health history. MRSA infections that are harder to treat are ones in:

  • Lungs or blood

  • People who are already ill or have a weak immune system

You may need to keep taking these antibiotics for a long time, even after you leave the hospital.

Expectations (prognosis): How well a person does depends on the severity of the infection and their overall health. MRSA-related pneumonia and blood infections are associated with high death rates.

Prevention: The best way to prevent the spread of staph is for everyone to keep their hands clean. It is important to wash your hands properly.

  • Health care workers and other hospital staff can prevent staph.

  • Visitors also need to take steps to prevent spreading germs.

If you have surgery planned, tell your health care provider if:

  • You have frequent infections

  • You have had a MRSA infection before

Folks I share this with you because MRSA is a very serious issue.  Earlier in the NFL pre-season, MRSA was discovered in the Tampa Bay Buccaneers practice facility.  One player was infected and out for several weeks, and there were several other incidents across the league. It is becoming more and more common and striking far and wide.  In my case, in the last 2+ years I have spent as much time in the hospital for MRSA related issues as I have for pneumonia.   Normally when I am released from the hospital the pneumonia has become a non-issue, but the MRSA continues, and that is normally why I am on antibiotics for up to 20 days after a hospitalization.   During hospitalization, MRSA just makes everything else about pneumonia worst.  Every symptom you have with pneumonia is doubled or tripled because of the MRSA.  I really don’t believe that MRSA has its’ own set of symptoms, at least so vastly different that a COPD sufferer would be able to say, “Oh! That’s my MRSA acting up.” If you look as the symptoms above you see they would be almost identical to those of a person with COPD.  Another significant aspect of MRSA is that it learns.  It learns the power of the antibiotics you are given and finds ways to make those antibiotics ineffective.  My doctors get me off antibiotics as early as possible in order for their drug of choice therapy to be affective. Also, there are a finite number of available antibiotics to effectively fight MRSA.  For me that’s the worst part, because I have had the opportunity to use most of the available drugs.  I now have MRSA with me 24/7; it has taken up residency in my left lung, and is in remission (for the lack of a better term).  You can be pretty sure that the next time I have pneumonia, the MRSA will act up and become part of the problem. But that’s the thing; it doesn’t have to and may not.  But my doctors always look for it immediately. 

Folks I do hope you find these words and phrases beneficial.  I also hope you have a pleasant day and great weekend.  Smiling another post complete and out in a timely manner.  LOL LOL. Thank you for your continued support, good thoughts, and as always your comments welcomed are encouraged – take care, Bill

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004520/

http://www.nlm.nih.gov/about/index.html

http://www.nih.gov/

 

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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 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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How I Feel Today 12.06.13

Folks, this is going to be an exceptional short post today.  I am rating the week a solid 3, if picky I could push to a 3.1 but, I am still adjusting to my new normal, so I figure 3 is damn good.

 

I had a brief appt with Doc Lungs on Monday to have my INR checked.  It was 3.1 for the 2nd consecutive measurement.  While borderline high, it is not enough to be concerned with, though a slight change in dosage should resolve this.

 

Also this week my Mediport out-patient surgery has been scheduled for 7:30 am on the morning of December 20, 2013.  The procedure is simple, I will not be put to sleep or down a local and a mild sedative to chill me ever so slightly.  The only real issue to this is that I have to be there at 5:30am. In preparation for this procedure I will be off blood thinners in total for 5 days prior to surgery.  This 5 day period will start on December 15.

 

Last week I told you I had the stitches removed but I didn’t share that my total time at the Dermatologist office was 15 minutes; I was in fact off by 2 minutes.  I did have to go back though and have some spots frozen, and that took an additional 15 minutes.  No further visits to the Dermatologist until June 2014.

 

The only upcoming Dr. appt. I have is with Doc Heart (on Friday the 13th, isn’t that special). This is my routine semi-annual visit. And the only thing I know he will call me on is some weight gain.

 

Vitals for the week, well seeing how they haven’t been taken I will report that O2 levels have varied from 84 pct (I had been working in the garage without being smart) to a normal range of 94-96 sitting on my butt and typing.  Heart rate has been 102-110 range most of the week.  The weight has been consistent at 274, which is okay because at least I am not gaining.

 

Folks, that would be the 1st report for the month of December.  Christmas will be here before you even know it.  Over these next few weeks you are going to find joys in both small and big ways, but you’re also going to find people who will get on your last nerve.  Be extra patient and remember the all the reasons we celebrate Christmas.

 

As always your comments are welcome, and I look forward to them. The link to Facebook is still in process, and I once again want to thank everyone that has stepped up to help.  Without your help the idea might be in the trash can.  Please take care, Bill

 
29 Comments

Posted by on December 6, 2013 in How I feel on a particular day

 

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This Blog is about COPD…..

Folks when I write, I don’t write about cancer or kidney failure or tumors, or many other diseases, because I don’t have any real personal knowledge of them, I write about COPD because that is the evil I know, but even then I am not an expert, I don’t have all the right technical words, and I can’t quote the best meds.  But I can and do write from the heart.  You can argue about any factual claim I make, because I am not an expert, I am just someone who suffers from this disease. But what I do try to do is write for the folks that can’t or won’t.  I am sure a lot of folks out there would like to be able to open up they’re soul and just yak about it, but have better sense than I do.  There are tons of folks sicker than I am, further along than I am that could add volumes to what I have to say.  And I wish they would, I would read every word.  But I also know there are folks out there that have just been diagnosed, that don’t have a clue as to what is in store. And hopefully this helps.  Yes parts are negative but much is positive.   To them I can’t stress enough to get a doctor you trust, get a doctor you trust, get a doctor you trust and if necessary change your lifestyle to something that will best serve you in the future.   You don’t have to make monumental changes slight changes can help you greatly.

In June 2012 I started this blog as a means for me to talk about the disease that was claiming my life.  I wanted to spread the word, I wanted to talk about COPD, I wanted to share my feeling, and what I was physically feeling.  In addition I wanted to talk about things that folks with terminal diseases usually don’t want to talk about, I wanted to share the emotional ups and downs of being terminally ill.  For the first 20 or so posts I had remained true to that mission.  Now in November 2013, I have posted 187 times. The significant portion of these posts don’t even mention COPD, they don’t tell the reader I have COPD, and if the reader doesn’t read any of the “How I feel today” posts the reader wouldn’t even know I was ill, hell if all you read were how I feel today, you would go “that’s not so bad” why is he bitching.

Let me take a moment to refresh you on what COPD is… A non-clinical description would be that the lungs are made up of thousands of little pockets that capture the oxygen from the air we breathe.  These little pockets then transfer the oxygen from the air we breathe into the blood and everything is good.  But these same pockets in a sufferer of COPD, begin to fill with crap, the more crap, the less air, the less air, the sufferer has shortness of breath, and an inability to complete tasks and life functions as they had in the pass.  This gets progressively worst.  When the pockets become filled they die, and can’t process the air into oxygen for our blood. As the disease continues there are less and less pockets to make this transfer. With each infection, with each exacerbation, more and more of these pockets become filled with crap and no longer function. There are a limited number of pockets available, the body doesn’t regenerate them, once they are gone, their gone!  And as you can see, the more of these pockets that die off, one’s ability to breathe declines.

Here is a more clinical definition of COPD…. Chronic obstructive pulmonary disease (COPD) is an umbrella term for a group of respiratory tract diseases that is characterized by airflow obstruction or limitation. It can be caused by tobacco smoking, coal dust, and a wide variety of other stimuli.  Individual can also be pre-disposed to having COPD, without ever smoking or living with a smoker. COPD is also known as CORD, COAD, COLD which respectively stand for chronic obstructive respiratory, airways, or lung disease. COPD has been referred to as CAL which stands for chronic airway limitation. COPD is a progressive disease. Obstructive changes in spirometry and decreases in diffusion capacity are typically seen before symptoms occur. Early signs and symptoms are shortness of breath on exertion, recurrent respiratory infections or a morning cough. As the disease continues, the symptoms are seen with increased frequency and severity. In the late stages, the patient often experiences severe cough, constant wheezing, and shortness of breath with minimal exertion or rest. At this late stage, progression to respiratory failure and death is common. It used to be thought that progression is typically caused by the patient’s continued exposure to tobacco smoke, but that simply isn’t true,  once you have the disease it progresses, changes in behavior, in exercise, in eating habit, can all slow the progression, but the disease will continue. Although medications often decrease symptoms, it is not believed that they prevent the progression.

From time to time a person suffering from COPD will have an exacerbation, which in its’ simplest terms is a flare up of the disease.  Sometimes these exacerbations are given the label “pneumonia”, and can put the individual into the hospital.  Sometimes the exacerbation is such, that the individual is not hospitalized but treated at home with an intense drug therapy. One of the benchmarks for an exacerbation is when specific antibiotics and/or oral corticosteroids are prescribed to combat the illness, or if hospitalization is required.   LOL in the clinical information I studied to create the above; one of the statements I read said no new exacerbation can start before the end of an existing exacerbation.  To me this is a real DUH !!! moment, and strikes me in my funny bone every time I see it. Also something that struck me funny is that according to the stuff I read no exacerbation is over until the doctor says so.  Clearly these are 2 “that ain’t no shit” statements.  I guess its doctors putting on their lawyer hats. Apparently frequent exacerbations are those that happen more than 2 times in a year.

I have just spent the last 300 or more words defining COPD and Exacerbations, and what it does to the body.  But I haven’t said a single word on what the disease does to the human.

I haven’t talked at all about physical limitations; the need to sometimes stretch one’s neck out to feel they can eat, or having to take smaller bites, and allowing that food to clear the passage way before the next bite. I haven’t spoken about having to grab a counter top to get from one side of a room to the other side.  I haven’t spoken about how difficult it is sometimes to take a shower.  I haven’t talked about how it severely hinders one’s sex life. I haven’t talked about getting dizzy walking to the mailbox and back without the supplemental oxygen. Nor have I spoke to the thousands of other things COPD makes it almost impossible to do, the keyword is almost.  But I will try in this post (well not all of the impossible things), but thru out this post I will add specifics to the short list above.  Also I haven’t spoken about the stress it puts on a relationship, or how COPD plays games with and in your head.  But I will try in this post.

I have used this example in the past, and it still is the most representative of how difficult it is to breath with COPD.  Take a small straw (a coffee stirrer) cut it in half and put each half in one of your nostrils, close your mouth and breathe thru the straws.  Heck, get a regular size straw for that matter and try that, if you’re using a regular straw that is approximately how an individual in the early stages of COPD feels, every second, every minute, every hour, every day, 24/7/365.  If you found a smaller straw, that’s how it is for me generally, but I will admit to having good days, and some not so good days.

If you catch COPD early with a great Doctor, a great diet and a great exercise program, and you watch everything you touch, you can keep COPD at bay for a long time.  And by at bay I really mean you can extend your time without a lot of lifestyle changes.  If you lucky, something other than COPD will kill you first. But folks, I have never heard of anyone dying of old age that had COPD.  I am not making light of COPD or dying, I am not trying to make jokes about it.  I have caught hell from other COPD sufferers for being so outspoken, or maybe flippant about the terminal nature of the disease.  For not being a Pollyanna, but folks the truth is COPD IS TERMINAL, it is the 3rd leading cause of death in the US, and soon will be the leading cause of death in this country.

That folks in the nutshell is the physical aspect of the disease.

But let’s not forget, COPD gets into an individual’s head.  It does so the moment the doctor says, “You have COPD and it is terminal”.  I remember the 1st time I heard it, my wife and I were at my pulmonary Doctor’s office.  We had the last appointment of the day.  Steph came with me to hear 1st hand what the doctor had to say.  In my case Doc Lungs said “Bill, you have COPD, in your condition you have a 50/50 chance to live 3 to 5 years.”  I don’t remember the date, but I remember those words clearly. We asked all the right questions, what can we do to get the max amount of time, what drugs are available, can I get a lung transplant, what will happen if I change my diet, and lose a bunch of weight, and on and on.  Doc Lungs answered each question in depth, and he didn’t sugar coat the answers, which I appreciated greatly, Steph was in tears for a part of the appointment, but she paid close attention to Doc Lungs, took notes, and left the appointment bound and determined.  Folks that appointment was 6 years ago, I have changed my diet somewhat, I have exercised somewhat, I have lost some weight somewhat, and it has all helped.  Because I am still here and earlier this year Doc Lungs again said I had a 50 pct chance to make it another 3 to 5 years.  He is doing the best he can and I know it, that’s why I take his word on face value, and move on.  I have never look at a calendar and said there’s my end date.  Each year I buy a calendar 4 months before the old one expires.  And let me say I like calendars that expire before me.

But for 6 years the debilitating effects of COPD have had their impact, on my body and my head.  Six years ago I played golf every week sometimes 4 or 5 rounds in a week, I played poorly but I played, I can’t play anymore, and trust me I have tried.  During my heyday, I could drive the ball 240 + yards regularly, when I stopped playing I could hit a 3 wood maybe 135 yds, I didn’t have a club in the bag that I could carry 140 yards. When I 1st went on oxygen, I could play a shot without supplemental oxygen, I could walk 30 or 40 yards to the green, stand around putt, and walk back with the group.  Before I stopped I tried dragging my portable concentrator to the green but that extra 13 lbs got to me.  I stopped having fun, so earlier this year I gave up my golf clubs (they had sat unused for 2 years).  Up until this season, I have bowled in a winter league for the last 25 years.  I gave it up this season.  When I go grocery shopping the 1st thing I look for is a cart to put my oxygen machine it, because it is easier to push a cart than pull the 13 pound portable oxygen concentrator.  Imagine when you bend over to tie your shoes you become out of breath.  Walking 40 yards without the supplemental oxygen leaves you breathless, almost to the point of hyperventilating.  The simple act of peeling a pound of shrimp makes you physically stop to gather yourself.  Carrying the grocery’s from the car to the kitchen, makes you stop and pant for a minute to gather yourself. But these are physical acts, if you have COPD you learn to adjust. You learn to give yourself more time; you learn to accept the help of the grocery store in loading the car.   You ensure that you have something in your path to grab onto if you become real short of breath.  The physical limitations as tough as they are, if you have COPD you learn to adjust to them.  You don’t have to stop making love, but you do adjust for your condition. You can go to the grocery store, but take your time, and don’t try and carry 9 bags at the same time.  Have a cart handy to help you move stuff.  Check with neighbors to see whose teens some extra spending money.  There isn’t a single thing I can’t do today that I could do 6 years ago.  Some things I have made a conscious decision to stop doing, but if I were willing I could.  And I believe that includes golf.  The disease forces you to change habits and to recognize limitations.  But it doesn’t keep you from life. But folks as hard as it is to adjust to the physical limitations, and these change constantly as well, it is the mental adjustment one has to make which is so much more difficult, in my opinion.

I don’t and I won’t be sexist about this because COPD is not gender specific, it kicks males and females alike, equally hard.  But being a guy I am clearly more comfortable talking about it from the guy perspective. Mentally it kicks me in the balls! It robes me of manhood. It makes me think less of myself.  It embarrasses me; it makes me feel less manly. Folks, I hide my condition to the best of my ability. I truly do, and only a select few know just how hard it is for me.  Thank God I have an outgoing personality that allows me to use words and smiles and stupid ham tricks to build and maintain a positive image.  But folks I am constantly embarrassed by the need to use the handicapped parking, I have a roll-a-bout which I only use if I have to walk any distance over 50 yards without support, and using it embarrasses me, it makes me feel years older than I am.  I think less of myself for not being able to do manly chores around the house, or to not be able to fix and repair things like I once could.  Sometimes I need to use the grab bars in the bathroom to take a shower, or if I am recently recovering from an exacerbation I have a stool to sit upon as I shower. Having said all that I think I am finally over having to wear the cannula all the time. I am a member of a discussion group that focuses on COPD, and without that group I don’t know where I would really be, soft smile, there is strength in numbers, and my group gives me the numbers.  We all suffer, some (not me) suffer quietly, some hide, some ache, but thru the group we all gain strength. We encourage each other, we support each other, and we share with each other the things that trouble us, the things that get us down and the things that make us smile.

Folks the process of dying isn’t fun.  I have rambled on and on, and I don’t know if I have said all I wanted to, but for those of us suffering from a terminal disease, one of the battles we constantly wage war against is depression.  But I must say this now and a million more times, depression is not a disease that focuses on the terminally ill.  Depression is not a disease that is age sensitive.  Depression is not gender specific, it can and does touch everyone, every age, every sex, every sexual orientation, every occupation, strong or weak, depression can find you and take you over. I don’t have a pill that cures you or me (but some pills can help), I don’t have something to read that changes things and makes it all good (but volumes and volumes of words can lift your spirits), I don’t have a special song that suddenly lifts my spirits (but I have many that do, but I also have many songs that will make me cry in a second).  For the most part I do know when I begin to slip towards depression. I also need to say that I believe there are degrees of depression, and that not all forms are critical. I don’t know all of the things that trigger it (but I know a couple of my triggers), and trust me I don’t recognize immediately when I am about to slip into the various types of depression.  But I know pretty quickly when I am feeling down.

My blog is about COPD, and from time to time I feel the need to ramble on about it.  The rambling helps my head, it lightens the load I carry, and it makes the real issues less burdensome.  For some it opens their eyes, for others it makes them want to bury their head in the sands.  Some find my words, words they want to scream out.  I just hope that it helps someone some small bit to either understand what might be going on with a loved one, or opens a door of understanding for them.

I am going to stop now; this has gone on and on.  I asked a very good friend if she would edit this post, because I felt it was going to be my version of “War and Peace.”  But she said no, she said get it all out, spill your guts, actually she called it “verbal vomit.”  And I thought I used earthy words LOL.  But I respect her greatly, so folks you have been subjected to my “verbal vomit.” If you have any questions, concerns or thoughts please feel free to add them.  Thank you for taking the time and expending the energy to get thru this.

Please take care, Bill

 

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How I Feel Today 10/13/13

Good morning my friends and witnesses LOL LOL. It’s a beautiful Sunday morning here in the Tampa area of Florida.  Football starts in a couple of hours and the only game of any important today (8:30pm) is the Washington Redskins at the Dallas Cowboys.  Sure I will watch what is on TV most of the day, but I won’t start paying attention until   the Skins / Cowboys begin play.  I will rate the week since my last post as 3.25, probably the worst day of the week (if there was one, was a 3.0 day).

The weather this week has been cooperating as much as can be expected, we haven’t had any rain to speak of, and the humidity has been acceptable. Day time highs in the mid to high 80’s, and evening temperatures in the low 70’s though my wife did report a morning temp of 65, and she isn’t even a qualified weather person.   For those of us with respiratory issues, weather is a significant factor in our day-to-day comfort.  Extremes in either heat or cold and humidity will play havoc with our lungs.

The only thing of any consequence to talk about has been my inability to sleep recently.  For 2 weeks and growing I have been sleeping less and less.   Oh I am in bed every night for 6 or more hours, but of those six hours, I think I am only sleeping at most 3 maybe 4 hours. I am able to function normally for the most part during the day, and sometimes I might even crash for 10 of 15 minutes. I do use a sleep aid, and have for a long time. I will bring this to the attention of Doc Lungs the next time I see him.  But I will also say something to Doc Head about it tomorrow when I see her.  LMBO I am sure there is an explanation there that I am not willing to admit even under cross-examination. BTW O2 levels have been fine and my heart rate is normal for me.

Upcoming doctor appointments include Doc Head, Monday morning and I have my monthly IVIG treatment on Thursday.  Otherwise it appears to be a quiet week.  Unless you want me to report that I am getting a haircut on Tuesday.

Next weekend the Granddaughter has been invited to invade, and she says she is looking forward to it, honestly so am I.  We will have her Friday night after homecoming thru Sunday afternoon. We will WII bowl and auto race, and I will play sit on her and pull my finger.  Because she is becoming somewhat of a budding author, I have set aside an area in my office for her to put her writing stuff.

Folks I have stretched this report out as long as I can, so this will wrap up this week’s addition “How I Feel Today.”   As always if you have any concerns, questions or comments, please feel free to share them with me.  Take care, Bill

 
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Posted by on October 13, 2013 in How I feel on a particular day

 

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How I Feel Today 10/05/13

Good Saturday Morning folks, I am going to be putting this post together as I watch the University of Louisville, kick some Temple butt on ESPN3.  My blood pressure will flow with the game, the better Louisville does, the lower my BP, conversely should Louisville do anything other than kick butt today I might stroke out, so it is your responsibility to pull for U of L to ensure I don’t. LOL LOL. It has been a pleasant week here in the Tampa area, daytime temps still summer like, and very little rain.  The humidity (which is an issue) has been almost Florida fall like, so I haven’t had that many issues this week.  I hope that no matter where you are you have had a pleasant week, and that your weekend and next week look particular good for you.  If you’re in the path of Karen, I wish you well, please stay save and dry.

For the week ending today, I will rate it as a solid 3.25.  It has been a good health week.  I didn’t have much in the way of health issues or appointments this week, though I did see Doc Head and my Internal Medicine Doc.

I saw Doc Head on Monday, and it was a good 45 minutes. It wasn’t all about what a great person I am (I knew that couldn’t last) LOL, it was back to work.  I appreciate back to work.  I also appreciate having Doc Head to talk to.  As I have stated in the past, I do worry about where “Doc Head type” folks go to unload all the crap they may hear. I would also like to know what classes they had to take to appear so totally non-judgmental.  Not that I have admitted anything that would cause me to fret, but they must hear things they don’t approve of or is so alien to them, passing judgment would be normal for non-doctor types. On a brighter side, it has been decided that I am not crazy, so I won’t be able to use that excuse in the future. That is a shame, I kinda like having a built in excuse.

Per my normal I spot check my O2 level several times a week, I do make an effort to check after or during stressful (physical) events.  Normal sitting on butt O2 level is right around 95/96 percent.  When I am physically challenged I can catch myself at the 83/84 level.  But by then I am gasping, so I have stopped to gather myself.  Heart rate is always close to 103-105, when I had my BP checked at my Internal Meds Doc ofc it was 112/62, which is close to my normal.

Having said all that my appointment with the Doc Internal went well, my cholesterol is great the bad stuff is way low and the good stuff is great.  There will be no changes in the medicine.  There is no reason to mess with success.   Internal Doc does not want to see me again for 6 months.  Wow, if I keep this trend going I will only be seeing doctors (except Doc Head) once in a blue moon.  That is a good trend.

I have no medical appointments at all in the coming week, so next weekend’s report should be extremely short.

So that will wrap up this week’s addition “How I Feel Today.”   As always if you have any concerns, questions or comments, please feel free to share them with me.  Take care, Bill

BTW — Louisville is up 24 to ZIPP and has the ball, you can breathe easy I doubt if I stroke out today,

 
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Posted by on October 5, 2013 in How I feel on a particular day

 

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How I Feel Today 01.04.13…..

As quickly as one year ends another begins.  Since I last reported (12.31.12) little has changed.  I am still looking at the flowers from the correct direction.  At the beginning of this week I completed my last Pulmonary Rehab and graduated with flying colors. An aspect of the rehab that I don’t think I have spent much time on is my oxygen level during exercise.  When I first started Pulmonary Rehab, no matter what exercise or duration of exercise I was performing, my oxygen level would drop below 90 percent on a very regular basis, sometimes it got as low as 82 percent, but over the last month, I don’t remember it dropping below that level once.  Yes I still gasp for air, but clearly (to me) the rehab has helped me retain oxygen in my  blood.  This change I completely give credit to the impact the Pulmonary Rehab has had.  Today I started my maintenance program. I choose using the hospital pulmonary rehab center, because it has nurses and the cost per session.  Having nurses there as you work out is a good thing, having it not cost a fortune is better.  My costs are $40 for 8 sessions, or 5 dollars a session, heck I spend more than that at McDonalds.   Hopefully I will do more workouts than visits to McDonalds.  In a separate post I shared my New Year’s Resolution, it was simple.  Just be here on 12/31/13 to make one for the year 2014.

In the brief period between Monday and Friday my health has not changed.  I still am running at a solid 3 level and peaking at 3.25 to 3.5 during the day.  As I stated above I have started my maintenance program.  But it isn’t about maintenance.  It’s about continuing the process and improving as you do so.  Today was one of the hardest to date because I didn’t have anyone monitoring me.  I went thru my paces, and when the day was done, I was slightly ahead on all prior levels.  It is quite apparent to me that I need to work on the upper body exercises, and weights.  My legs are still relatively strong and the exercises and weight work with them is much easier that upper body work.  I am setting the bar higher, reaching for whatever the maximum is so I had to work harder.  Recovery time between exercises has also increased due to the increased effort.  This wasn’t totally unexpected, but a bit shocking just the same.  Improving should be and is the goal, but everyone has good and bad days, realizing this will allow me to not meet my goals every time, yet meet them for the overall.  I also understand that I at some point I will real my ultimate level then the goal changes to maintaining that level.

Getting off my dead butt and actually completing the Pulmonary Rehab, has been great mental and physical victory.  I had the talk down pat, and I could use all the right words, it was kinda like one of the million times I tried to quit smoking.  But actually getting out there and doing it, WOW that was the great part, and that gives me the mental courage to continue.

Next will be to rehab my belly, I haven’t developed the courage (and really the desire) yet to do the simple exercise of pushing away from the table.  Maybe later in the year I will start that significant effort.

As always your comments welcomed are encouraged – take care, Bill

 
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Posted by on January 4, 2013 in How I feel on a particular day, Ramblings

 

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How I Feel Today 11.30.12

There seems to be no end to the days where I feel 3.0, though over the last couple of days I barely got to the 3.0 level.  I have been having wave after wave of coughing, some chills, and other symptoms of a cold, but nothing is developing, Thank God.  Also, it does seem to calm down at bedtime.  My temperature has been steady 98.6 within a tenth or two.  BP has been great 100/60 pulse for me a little low today at 84, (normally in low 90s) and oxygen level at 97.  So all the numbers are good, it’s just I seem so damn lethargic.

On Tuesday of this week I had my monthly IVIG treatment.  I arrived at the infusion center at the appointed time of 830am, but prep didn’t start until almost 10am.  A couple of reasons for this were the center cannot start any patient until a doctor is on site, and the Doctor was running real late.  That coupled with fact there were a dozen of us that had been schedule for Wednesday, Thursday, or Friday of last week had been rescheduled for that Tuesday.  All of this made for a backup at the needle landing spot.  So what is normally a 5 hour process turned into a 7 ½ hour process.  Having said that I really feel lucky, I have my treatment once a month, many of these others have it daily or weekly. Granted they aren’t there for 7 plus hours, but I would rather give up one day a month to this that an hour or so every day.

I am down to my final 5 PT’s sessions and I truly believe they have helped in a significant way. I will admit that I slacked off today, my left shoulder has been sore so I didn’t do any major upper body today, and the lethargic feeling I had mentioned earlier really just impacted the entire workout.  Mentally I just wasn’t into it today.  Hopefully after a restful weekend I will finish my last 5 sessions strongly.

As always your comments are welcomed.

 
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Posted by on November 30, 2012 in How I feel on a particular day

 

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