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How I Feel for the Week Ending 08.29.14…

Well the jukebox is back and completely functional, my new computer is sitting here humming away, and I have no excuses.  This post is going to be riddled with music references because I have missed so many opportunities to share with you the music I have been missing during my recent computer mishap.  So without further ado here is our first sidebar: Right off for my wonderful Canadian Friends I have heard several tunes from our favorite Nickelback; including “Next Contender,” “This Means War,” and “Bottoms Up.”  Also I have indulged in Five Finger Death Punch, Led Zepplin, Pearl Jam, and Soundgarden to start the day. 

There really hasn’t been any change at all in status since last week, if anything this week was an improvement over last week.  Yes SOB is still a critical issue, yes I get winded getting winded, yes I need to gather myself before tackling and working my way thru any chore, yes I am coughing and while the cough is productive there is no yellow to it.  All of these things while the same are different and if for no other reason this is a better week because the heat and humidity has been slightly lower.  Sidebar: we have been listening to Halestorm, Gemini Syndrome, The Black Eyed Peas and Shinedown this set.

This week besides the normal visit from Hospice (and a couple of addon visits) I had only one medical appointment this week which was with Doc Lungs.  First, Doc Lungs seems to think I am doing okay, he checked the vitals and listened to my lungs.  He commented that they sounded “normal” for me.  Someday I am going to have to listen to my lungs then immediately listen to the lungs of someone who doesn’t have respiratory issues.  That would be quite interesting and most likely equally educational. This week, besides my normal Thursday visit with my Hospice nurse, I was also visited by Respiratory Therapist from Hospice, and he noticed my weight lost, and stated I sound like I always do,  In addition I was also visited by the Hospice social worker, just checking my head to see if it was still screwed on correctly.  I am assuming I passed her muster because no one has been by today with that special jacket. Other than my normal weekly visit by the Hospice nurse I have no repeat no medical appointments scheduled.

Per usual and considering everything available to me, I am going to rank myself as 2.75 for the week, yes it is a touch higher, but the heat and humidity have been lower and I haven’t ventured out much this week, so that is a fair assessment of my physical health for the week.  Sidebar;  More Nickelback, Lucinda Williams, Heart, Seether, Theory of a Dead Man, and Van Halen have provided the musical background for this portion of the weekly report.  Mental health continues at a 9 level, I refuse to be down more than 7 or 8 consecutive minutes.  Of course this rating doesn’t include the normal aches and pains of everyday life.

So to wrap up week ending 08.29.14, we are ranking the week an overall 2.75, with a 9 on the attitude scale.  So we can move on to the vitals for the week ending 08.29.14

 

  • INR = 2.3 taken 08.25.14 – no change in meds

  • O2 level @ 2.5 LPM = 94 taken 8.28.14 – earlier in week O2 level as low as 77 after brief walk, took 15 minutes of resting to reach 93  

  • Peak Flow = 210 taken 8.28.14

  • BP = 112/68 taken 8.28.14 – earlier in the week it was as high as 132/80

  • Heart rate = 105 taken 8.28.14

  • Temp = 99.35 taken 08.28.14

  • Weight = 259 taken 08.28.14

 

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 would like to spend a couple of minutes of your time say thank you for being here for me.

This will be my 302th post in the 2 plus years I have been writing this blog.  Over that period I have accumulated 378 “followers,” I have received over 2,000 comments and have responded to 98 percent of them so my total comments are over 4,000, and I have been viewed over 16,500 times.

If I could I would write an individual note to each of the people who follow me for whatever reason they do and thank them personally. I would. I would take that moment and say without them, without their support, without their comments, this blog may have died on the vine.  So collectively thank you.  Thank you for the time you spend with me, thank you for reading my words and sometimes sharing them with your followers.  I also want to thank you for each and every comment including the smiley faces and kisses.  Sometimes so much can be said with an emotional icon.

I want to thank you for indulging my rants and rages, and my sometimes melancholy posts.  Smiling also thank you for listening to my endless babble regarding how I feel for a given period of time.

As I struggle with my COPD, my blog has become my beacon, my shelter, my friend, and the pillow I cry on. It has provided me strength and a place to display my sense of humor, as well as, my serious side.  But even more importantly it has become something special to my friends and followers.  I can’t even imagine what it means to everyone that reads my blog, but they do so for their own reasons.  Some because they to suffer from COPD, some because someone they love suffers from this or another terminal disease.   My blog isn’t a cure, I am not a doctor, I am a patient just like so many of my readers.  I draw strength from my readers and hopefully they draw some from me as well.  I know that without my readers my world would be much more difficult, and the battle that much harder.  I do believe that without you it would be easier for me to throw in the towel and give up.  But I gather strength and courage from YOU my readers, my friends, my cyber family.  Thank you so very much for all you have given.  And for all that I know you will continue to give.

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 8.22.14

For the week ending 08.22.14, it still quiet time, my jukebox is back, and when I sit in my office it is blasting, but I am using my wife’s computer because I really hate the keyboard on the laptop. I will continue to use her computer until I get WORD installed on the new computer. 

Since last week the coughing seems to have lessened, as I sit here and coughing up fur ball (that’s a joke folks). The mucus which I am coughing is school paste white, so I don’t believe there is anything further or unusual going on in my lungs.  If you remember last week I thought I was going thru a minor exacerbation and during my appointment with Hospice today, my nurse seemed to confirm that suspicion.  The heat and humidity is taking its toll, but I am not the only one who is suffering.  Normal healthy people are also bending to the will of the continuing summer here in Florida and elsewhere across the country.  To avoid the worst of it I stay inside in the A/C, as I suggest you do as well. 

The Hospice nurse also noted and said she would advise the doctor of my not using the Trazodone any longer for the reasons stated last week.  She went on to say that sometimes Trazodone is ineffective as a sleeping aid.  So I will be staying with the Ambien for the time being.

During today’s appointment I was also going to address how I felt I had been blown off last week, besides forgetting to address it, I believe last week was the aberration which happened as a result of changing personal and a recent “right-sizing” at my Hospice.  I am going to keep my mouth shut, because in retrospect I believe I had a burr up my butt last week.

On Monday I meet with Doc Head, it was a productive meeting and the hour when quickly. I did show her the gift I was given in July and she was extremely impressed.  As I am every time I look at it, and because it sits in front of my monitor I see it often.  I was also supposed to see Doc Lungs Monday, but that didn’t happen, I had too many spoons in the bowl, and I didn’t want the 2:20 appointment because he is generally running behind by that point in the day.  So I will see him this coming Monday (I will also have my INR checked). This change will put off the conversation regarding my rapid respirations, until next Monday.  I did speak briefly with the Hospice nurse regarding this but we didn’t come to any conclusions nor did we agree to any change in current actions. Being honest I have been advised there are other stronger drugs available that can alleviate this, but they come with a price (like; driving while using them), so I will be staying with the morphine for the time being, because in my mind it is the lessor of the evils.

All things considered I am going to rate this week a 2.50 physically, and a 9 on the mental meter.  If it were not for the heat and humidity and the SOB that causes this week could have been a 2.75.   

Let’s get the vitals out-of-the-way for the week ending 08/22/14

  • INR = 2.6 taken 07/28/14 – next INR reading scheduled for 08.25.14

  • O2 level @ 2.5 LPM = 92 taken on 08/15/14

  • Peak Flow = 210 taken 08/21/14

  • BP = 118/80 taken 08/21/14

  • Heart rate = 103 taken 08/21/14

  • Temp = 99.0 taken 08/21/14

  • Weight = 258 taken 08/21/14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08/22/14, moving now to the word of the week discussion aspect.  This week I want to spend a few of your minutes talking about “Mad.”  As usual I have gone to the internet for an “official” definition.  This weeks’ definition comes to us via Dictionary.com I am providing the link because the definition and explanation are so much longer than I anticipated so I will be using the Noun and verb component of the word. 

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

MAD – noun — an angry or ill-tempered period, mood, or spell.

MAD — verb — (used with object), madded, madding. Archaic. to make mad.

MAD – verb — (used without object), madded, madding. Archaic. to be, become, or act mad.

MAD — Idioms — mad as a hatter, completely insane.

A few weeks ago I wrote about angry and anger, those 2 words caused a ton of wonderful thought-provoking comments, dialog and a lot of discussions between myself and blog buddies, as well as, my friends on Daily Strength.  Much more than I expected, which caused me to think that I may have been looking to write about being mad almost as much as I wanted to write about being angry.  Because there is a significant difference between being angry and being mad, but are many times they can be interchangeable.

Mad is unique to the individual, we all get mad, we get mad at all manner of things, incidents, events, individuals, poor driving, spouses, children and the list goes on into infinity.  But what many of the terminally ill people I have shared comments/discussions/thoughts with find is that rarely are we mad about dying. We have reached that point where dying isn’t the issue, it’s a result.  Yes we get emotional about dying, none of us wants to die, but dying isn’t the root problem.  The terminally ill have the same problems/issues as a healthy individual, we all get mad when we see events that makes our blood boil, or see another politically charged commercial pointing out faults rather than offering solutions, or read about a child being abused, or how old folks are such easy prey to scam artists, and how the homeless are treated. We all get mad when we feel poorly treated, or misused, neglected, lied to, cheated on, robbed, accused of (fill in blank) or ignored and this list could go on forever as well. These emotions run deep to the soul of everyone, healthy or terminally ill. 

Our discussions have found that being terminally ill is the act blamed for a lot of the “mad” and angry going on between caregivers and patients, between spouses, between friends or any of the different possible combinations.  It’s a label we can all reach for to excuse “mad” behavior, saying if they weren’t dying then they wouldn’t be acting so mad.  The reality is that we could be mad for any or all of those listed above.  What then happens is that the root cause of the mad (whatever issue it maybe) is never resolved, it is sometimes casted aside only to flare up again and again, each time being deflected by saying “she’s mad because she is dying.”  Or he doesn’t understand because he is sick.  Being terminally ill is not an excuse or an alibi for being mad.  Discussions have led me to think that some, maybe many terminally ill folks just let the blame fall on “dying” because it is the easiest solution.  This way they don’t have to waste the time or energy clearing up why they are mad.  Allowing the “mad” to be tied to “terminally ill” allows both parties to get pass the problem without addressing the problem, and everyone moves on until the next time.  Conversely I have heard stories where the terminally ill were in fact a major PIA and carried their dying like a shield to deflect any reproach  Saying things like, I did it or felt this way because I am dying, and on and on.  It is a two-way street, that both sides try to travel with the least bit of friction.

This post isn’t about pointing fingers, it’s about opening eyes.  Being terminally ill or healthy doesn’t change one’s basic values, it doesn’t change one’s morals, it doesn’t change being right or wrong.  Being terminally ill is not an excuse for being an ass.    But being healthy doesn’t allow arguments to be shifted “X is only mad because she/he is dying.”  Arguments and mad have to be settled on their own merits and not because one of the parties in the argument is terminally ill. 

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 08.15.14

For the week ending 08/15/14, it will quiet time, my jute box is broken, so I will be doing this report solo.  My desktop is on it last breath and the new one is sitting on my desk, I am just waiting for my new Office Professional Suite to arrive, and my IPod moved to the new computer and it will be full speed ahead.  But other than having computer and music woes I am doing I pretty good.

I have had a bad week for coughing, in retrospect I believe I had and got away with having very mild exacerbation of my COPD I will be talking to Doc Lungs Monday and get his read, hell he might say I just had a cold.  My energy level is low, and that damn SOB with be the death of me LOL. As many of you know I spend a considerable amount of time complaining about my not sleeping worth a damn.  My internist at Hospice changed the medication, had me stop taking the Ambien and start taking Trazodone.  The 1st night under this drug, I kinda laid there like a log. Not sleeping but not awake. The 2nd night I slept slightly better than day 1. The 3rd and 4th nights I had my Alpazolam about an hour before the Trazodone and that put me to sleep a bit better, but not as good as it should. The next night as I prepared for bed I ended taking the Alpazolam and Trazodone as well as my bedtime morphine and I slept real good.  But that was way to much medication before bed.  So I have stopped taking the Trazodone and gone back to the Ambien, I may not sleep great but I don’t run the risk of not waking up.

When I see Hospice again I this will be part of the main conversation.  Speaking of Hospice, the organization I am being treated thru is just like any other company or organization.  When change happens, it sinks to the lowest of levels.  There has been a reduction of staff, and clearly they have not worked all the kinks out of how to perform the necessary services with fewer people, I was called on Thursday afternoon about 30 prior to my appointment and the new nurse asked me how I was doing, to which I honestly replied I was doing okay.  To which she immediately responded then she guessed it wouldn’t be necessary for her to stop in this week, but if I needed anything to give the office a call and they would take care of it, then she promptly hung up.  It’s a good thing that I honestly felt okay because being blown off like that could be hazardous to ones’ health.  Then I thought of the more timid folks who say they feel okay or fine or good, when they in fact don’t.  This too will be addressed next week with the Sapphire Team Leader.

I think my most telling symptom of having COPD today is the higher than normal respiration per minute.  I believe that a normal healthy person breaths at the rate of 12 to 20 breaths per minute  I am consistently breathing at a rate that exceeds 20 breaths a minute, sometimes as much as 25 to 27 per minute.  The increased respirations per minute have an impact on other components of the body especially the heart.  I will be seeing my heart doctor in a couple of months and maybe we can work out a plan to slow me down.   I am also seeing Doc Head Monday and Doc Lungs Monday afternoon, I will be addressing the issue of rapid respirations Monday, so Monday is going to be CO-Pay day LOL.

All things considered I am going to rate this week a 2.50 physically, and an 8 on the mental meter.  Going back to talk about Trazodone for a minute, it’s prime purpose is to treat depression, aiding one’s’ ability to sleep is a “side-affect” of the drug. Personally I don’t feel depressed maybe I should but I don’t, and clearly the component of the side-affect didn’t work for me.

Let’s get the vitals out-of-the-way for the week ending 08/15/14

  • INR = 2.6 taken 07/28/14 – next INR reading scheduled for 05.12.14
  • O2 level @ 2.5 LPM = 93 taken on 08/15/14
  • Peak Flow = 210 taken 08/15/14
  • BP = 142/73 taken 08/14/14
  • Heart rate = 102 taken 08/14/14
  • Temp = 98.7 taken 08/14/14
  • Weight = 260. taken 08/16/14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08/15/14, moving now to the word of the week discussion aspect.  This week I want to spend a few of your minutes talking about “Medicine” as the word for the week.  As usual I have gone to the internet for an “official” definition.  This weeks’ definition comes to us via Yahoo.  I am not providing the link because I have copied the complete definition into the post.

Medicine – noun  — 1 — The science and art of diagnosing and treating disease or injury and maintaining health.  2 — The branch of this science encompassing treatment by drugs, diet, exercise, and other non-surgical means.   3 — The practice of medicine.  4 — A substance, especially a drug, used to treat the signs and symptoms of a disease, condition, or injury. 5 — Something that serves as a remedy or corrective. medicine for rebuilding the economy; measures that were harsh medicine. 6 — Shamanistic practices or beliefs, especially among Native Americans.  7 — Something, such as a ritual practice or sacred object, believed to control natural or supernatural powers or serve as a preventive or remedy.

The word medicine comes to play this week because of my bout with the drug Trazodone.  I complained that I wasn’t sleeping and was given an anti-depressant to solve the problem.  The problem still exists.  While I am a diehard do as the doctor says kinda guy, I hardly ever question the medicines I am given to help with my battle against COPD, this doesn’t mean I have given up my rights to know what I am taking, the impact (both good and bad) or the and potential side effects.  Each prescription I get comes with an information filled document, whether it’s the 1st time taking the drug or the 100th refill.  That document is always provided and extremely important to both you and me, especially if you have more than one pharmacy filling prescriptions.  You really need to read and familiarize yourself on what each of your medicines are for, potential side effects, restrictions, and when and how to take.  Things like; must we snack prior, is a sip of water enough or should we drink an entire glass. All of this information is in our hand, should we need more information regarding a drug we can follow it onto the internet and do more research. I will be the 1st to admit that in the past I most likely just dropped that info sheet into the circular file, and just started taking whatever med I was prescribed.  But you can teach an old dog new tricks, and my interest is more keen now than ever before.  So yes I do read the info sheets on my meds. We have to be our own advocates when it comes to the medicines we need to take.  If you have difficulty understanding the document I know my pharmacist will explain to me in terms I understand, and I am 99 pct sure yours will be more than happy to help you understand.

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

PS: My editor is working on a COPD video project. This will be a series of helpful how-to videos with tips for COPD patients such as how to quit smoking and how to get a good night’s sleep.  I was asked if I knew anyone in the DC or close by that would want to participate.  Someone with COPD close to D.C. who would be willing to speak on camera about these tips and their experiences? I told her I would ask my readers.  So if anyone who lives in the DC area that would be interested n taking part contact me, I will forward your name on.  Thanks Bill

 

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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 07.25.14…

Good day folks, my home has been invaded by three of the dearest friends my wife has in the world.  They are the loveliest, sweetest, wonderfulist, grandest folks you would ever want to meet and they all read this, so I am not saying anything harsh, they know where I live.  But for the next 5 days (starting late last night) my role around the house will be that of H.R. Step and Fetch, and duty chauffeur for the lot.  That’s not to say I won’t have my fun, just that I am sure I will be busy.  Weather here in Tampa is working its’ way back to normal, with afternoon thunderstorms, and a ton of rain in selected spots. The humidity is normal for the conditions, which just means if you’re outside you will have issues breathing.

I had 2 medical appointments this week, one with Doc Head, and the other my normally scheduled visit with Hospice. 

The appointment with Doc Head was helpful as always. I did speak to her about a concern/fear I was having regarding someone who starts reading my blog, as I begin my journey towards the end of retirement.  The symptoms I display and the information I provide may be a tad bid disconcerting to someone who themselves are just being diagnosed with COPD.  My concern lies in the potential impact my blog may have on mindset of someone in the mild or moderate range of the disease, and reading about what the end stage is like.  Being honest my recollection of the conversation is a bit muddy, but I believe (or want to believe) that I need to remind folks that I had all the symptoms of COPD for almost 20 years before I was officially diagnosed with the disease (at the moderate stage) and it’s been well over 10 years since that formal diagnoses.  

Doc Head also suggested that I do in fact report weekly on my mental state, to clearly show that while the body may be headed in one direction, the mind and attitude does not have to follow.  So effective this week I will in fact be giving a score on a scale of 1 to 10, where 1 equals less than piss poor, and 10 is friggin great, and there will be no half or quarter points.  So for the week ending July 25, 2014, my mental health score is 8.  Remember this number has no bearing on my how I feel physically number, and there is no unified number that combines them.  For references purposes the week I had lunch with Colleen and her husband was a 12.

This week during my normal Hospice visit, my nurse and I discussed a multitude of different things. Of course we had the weekly “what is important to me question” to which I answered having a great weekend because Steph’s friends were visiting was important to me.  We also talked about pain (beyond plain old getting old pain) and my pain level.  My current nurse is leaving Hospice to pursue other job opportunities and will only be with me a couple more weeks. I should expect to meet my new nurse soon.  A common complaint I have had for weeks and weeks is that I just don’t sleep as well as I should or need to.  More than once I have asked the prescribing doctor if he would increase the dosage, to which he has said “No.”  I do understand no, and have left that alone.  I did suggest to Hospice that maybe because I have used this drug (Zolpidem Tartrate 10mg) for such an extended timeframe that maybe my body has become accustomed to it, much like it has to some antibiotics, and is no longer effective. The nurse said she would address this with the Team Doctor and advise me.  We also talked about my SOB and the impact it has on my day to day existence.  I can barely walk across the width of my home without stopping to gather myself.  More and more it takes less and less to cause me to stop and gather myself.  I would be lying if I said that the drugs don’t help they do especially the morphine sulfate.  I am allowed a dosage every 4 hours (as needed) which equals 6 doses a day. I have never done 6 doses in a day, I have always found enough quiet time to prevent me going there.  But there are times when I could do 2 or 3 doses in a 4 hour period, but haven’t.  

Considering all the information I am going to rank myself as 2.5 for the week.  Of course this rating doesn’t include the normal aches and pains of everyday life.

So to wrap up week ending 07.25.14, we are ranking the week an overall 2.5, but the attitude is an 8.  So we can move on to the vitals for the week ending 07.25.14

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

  • O2 level @ 2.5 LPM = 93 taken 7.24.14

  • Peak Flow = 205 taken 7.25.14

  • BP = 118/68 taken 7.24.14

  • Heart rate = 92 taken 7.24.14

  • Temp = 98.7 taken 07.24.14

  • Weight = 266 taken 07.24.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.25.14, moving now to the word of the week discussion aspect. This week I have chosen the statement “How I choose a word or phrase for this portion of the post” as the word/phrase of the week. Again this week there will be no dictionary definition because one doesn’t exist.  So I will be speaking off the cuff again today.

It really is quite simple.  If during the week I see a doctor, or read a post, or witness an event (medical or not), or have a conversation either live or in chat, or someone has made a suggestion, if it has meaning to me, if I have experienced it, if my imagination catches it and grabs it, I will write about it.  Some weeks I will write down 8 or 9 potential words or phrases to talk about, other weeks I struggle right up to the moment I get to this portion of my post. I will stare at the screen, I will stick a word or phrase in, and if it doesn’t take off then, I keep searching, until the right word hits me at the right time.  The meter for if it grabs me or not is short.  If I am not typing at full speed, and my brain not working overtime throwing words out with moments I discard that word or phrase until the right one pops.  Twice over the weeks I started with a word then threw it out, only to come back 3 or 4 weeks later and write 5 or 6 hundred words on the topic word.  Also there is no minimum amount of words I will use when describing my feeling towards a word or phrase.  I write until I am done, or until I think you have heard enough.  Smiling that’s the point I am now on this phrase.  Thank you.

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 of 05.16.14

For the week ending 05.16.14, I decided to cheat and start this report on Thursday morning as I sit and have my monthly IVIG treatment. It is a quiet place, and I am causing a ruckus by having the audacity to actually question the billing methods.  LOL my vitals are checked repeatedly throughout the process, and my 1st blood pressure reading of the morning was 112/62 after the initial conversation with the billing folks my blood pressure was 124/74, 30 mins later bp is now 132/82. I told them to go ahead and call 911 because by the time I get the billing issues resolved to my liking I will most likely have a stroke. I am not the least bit surprised but the upswing and I suspect before the end of the billing conversation it will be in the 140/90 range.  But it will drop quickly back to normal 5 minutes after the process is complete. Sidebar; The 1st comment I received pointed out that I didn’t give a score for how I felt for the week.  I am rating the week overall a 2.75.  It was a good week, not great, but the fact that I was so dang busy all week kept the score from climbing.  BTW thanks Brenda for pointing this lapse out.  Yes LOL I failed an expectation. But Thanks for pointing it out.  Take care, Bill

Health wise very little has changed, the coughing is about the same, tiredness normal, SOB seems to be progressively worse than last week, and my energy level seems to be less than what I would consider normal. Also, my inspirations are still running at a rate over 20 breathes a minute. There seems to be no repercussions from the removal of the tooth, and no residual pain.  I will admit that I am falling apart LOL LOL I will also admit that when I do these weekly reports they are more a general health update and not strictly related to my COPD.  I guess the simple thing is the fact that folks with COPD or other terminal diseases have “normal” health issues to deal with during their progression thru the disease.

Let get the vitals out-of-the-way for the week ending 05.16.14

  • INR = 1.8 taken 05/12/14 – dosage changed – retest on 05.19.14

  • O2 level @ 2.5 LPM = 92 taken on 05.15.14

  • Peak Flow = 212 taken 05.15.14

  • BP = 112/62 taken 05.15.14

  • Heart rate = 108 taken 05.15.14

  • Temp = 98.2 taken 05.15.14

  • Weight = 267.2. taken 05.15.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.16.14, moving now to the word of the week discussion aspect.  This week for the 2nd week in a row, we are going to talk about Expectations.  I had a tremendous amount of positive feedback on the topic of expectations, both here and on DS, for which I’m greatly appreciative. Last week I spend a good bit of time talking about the expectations we impose upon ourselves and the very real need to give ourselves a break.  Today I would like to talk about those expectations that others have and place on us.   As normal we will start with the web dictionary definition of the word:

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

ex·pec·ta·tion  — noun  1. the act or the state of expecting: to wait in expectation. 2. the act or state of looking forward or anticipating. 3. an expectant mental attitude: a high pitch of expectation. 4. something expected; a thing looked forward to. 5. Often, expectations. a prospect of future good or profit: to have great expectations.

Last week I found this to be one of the better definitions I have used for a word or phrase, this remains true for this week, and it’s still a great definition.

When I wrote about expectations last week I briefly spoke to the expectations that others hold us to.  I earnestly and flippantly said “F…..K them.”  I have had a week to think about that remark and I really wish it were even remotely that simple.  I am equally sure when you read that last week you had to have said “Bill, you got to be kidding, it’s never that simple.”  In truth (in my opinion) F them is the furthest point from that position.

The expectations others have is us, come from many places: a. the expectation may be a value that the imposer establishes without any regard to the individual, b. the expectation may be the result of a previously demonstrated skill or talent, c. the expectation may come as a result of a learned or taught behavior. d, the expectation may come from a performed habit, e. the  expectation may come from a negotiated agreement or f. the expectation may come as a result of or a combination of these.  More troubling is the fact that the expectation could come from or be imposed upon you from someone you don’t even know.  A good example of this could be a high school athletic that demonstrates superb skills that is being watched and stalked by recruiters and coaches at higher levels of the sport based purely on their expectations for his potential. That athletic could say F it, and be done. But rarely does that happen, what generally happens is that the athletic learns of the expectations and works to meet and exceed those expectations, those expectations becoming the focal point of their lives.  I am sure you have seen many other examples of this type of expectation and I am not going to dwell on it for this post.

This post is about the expectations others place on the sick and terminally ill.  It’s about how those of us in this position deal with the expectations of others.  Everyone has someone who expects something. This is just a simple fact of life.  But the expectation and the direction from which is comes can have a dreadful impact.  The direction can come from a spouse, a child, some other loved one, a neighbor, a caregiver, the boss, a co-worker, and the list is really endless.  Thankfully most of us only have expectations from a couple of directions.  I believe the closer the caregiver is to the individual who may be ill, the less the expectations drop during the course of the illness, until it is slap in the face apparent.  Then the expectations drop dramatically.  Clearly this isn’t always the case, but the ones closest to the person who is sick, sees each gradual step of decline, and these steps blend together, making noticing the change that much more difficult, and because the change isn’t noticed, the expectation is not reduced.  If you don’t notice the change it is extremely hard to adjust one’s expectations.  This isn’t the care givers fault; I believe it’s just nature.  But it doesn’t change the fact that the care giver while seeing the deterioration of abilities does not adjust their expectations.

Sometimes the care giver does in fact notice the inability of the ill, to perform has they had, and actually addresses it with the person receiving care.  It is incumbent on the person needing care, to speak up, to acknowledge that they need help and be honest and forthright about it.  Folks, I have to stop here and WAVE my hands, because this is clearly a case of “do as I say, and not as I do.”  I am terrible, and I am sure I have put my wife into a bind because of it.  I do still try to man up and meet every expectation no matter the source.  Thankfully I know some very forgiving folks.  There are a bunch of qualified folks that can help both the care giver and the care getter they include; Counselor’s, Clergy, social workers, and Hospice to name a few.  Seek these folks out, find some neutral ground to have the conversation and work on the problem. Soft smile, believe me in my case it will/would/has taken more than one conversation, and it is an ongoing conversation. During the conversation be honest.  I will repeat that be honest.  Having said that, I know, I KNOW, that being honest is not nearly as easy as typing it on this page, but you must make the effort to communicate, these conversations are a must, and they build a foundation by which you and your care giver can keep the lines of communications open.  I know from feedback I have gotten over the last year that some spouses are in some level of denial.  I know this is particularly hard on the care getter, they have made their situation known, they have tried to have the conversations, maybe they have even drawn in outside resources, but the dynamics necessary to get the message through to build that foundation are just not working.  Please don’t give up, that is the last thing either of you need.  Am I saying be a pain in the ass to get the message through, yes I guess I am.  Being gravely ill, or worst terminally ill, is stress enough all by itself.  But outside sources laying unattainable expectations on you does you no good at all. Earlier I said talk to someone, a counselor, your clergy, and your doctor, enlist their help.  Clearly if the caregiver is an employee of some organization get rid of them and have that organization provide someone who understands, and makes the necessary accommodations.  If the caregiver is a spouse or other loved one that will be more difficult.  And I am not smart enough to have a solution, and even if I were, that doesn’t mean my offered solutions would work for you.  I am saying don’t close the door, keep communicating.  If your spouse or other loved one isn’t willing to seek counselling with you, then GO BY YOURSELF, the counselor can and will help you find ways to cope.

Finally a very important aspect which I have not addressed is that the “caregiver” needs help too.  I am a care getter; I know what a PIA I can be.  I know how pig-headed I am. I know I am forever telling my wife I can handle it.  Folks, sometimes I am so full of CRAP.  Having said that, the care giver is under such stress, I would say that the vast majority of care givers are spouses or loved one.  Folks they need time off, the job of care giver has got to be one of the most difficult in the world especially if that care giver is also working full-time to provide the essentials.  A full-time career and a full-time role as a care giver has got to be daunting, it has to wear them down and out.  It has to make them short-tempered from time to time, they do need time off, quiet time, peace, and a real opportunity to relax and regroup.  So it is our job as care getter to accept this and promote this, and help our care giver to the fullest extent possible without over doing.  That’s a key here you can’t over do.  Your care giver needs your understanding, your blessing, and your insistence that they can take a break and grab some me time.  Please keep this in mind.

This has gone on way to long. I thought when I started Thursday that I would have wrapped this up and posted by sometime Friday afternoon.  But life got in the way.  I hope this opens the door for communications, and allows for the dynamics between care giver and care getter to form its own bond.  Also I am sure this won’t be the last time we talk of these roles and responsibilities.

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 05/09/14

For the week ending 05.09.14 this report will undoubtable be late, but it will be coming from my home and under the influence of my music.  Sidebar, it is one of those days, and I started the music with Vince Gill’s “Go Rest High on the Mountain.” Smiling I am in a Country Music kinda mood, so we have moved on to Big & Rich’s “Why does everyone want to kick my ass”.  We are out of the hotel, and have been since Wednesday evening, and Lord to I appreciate being home, in my own bed, my own shower, and my frig!! It is so refreshing to be home.  The wife is tickled to death with the new floor, and we all know happy wife = happy home.  The oral surgery went well (on Tuesday), and the offending tooth pulled, and have only a slight bit of post extraction pain, so little in fact I have only taken one pain pill in the last 24 hours.  If I live to be a 100 I might end up with dentures. LOL LOL. The only other appointment I had this week was with Doc Head, it is nice to have someone who you can completely bare your soul and inner thoughts without fear of repercussions.  Oh it appears that Hospice day will be on Thursdays.  They will come once a week to check me out, they take all vitals, make sure all my prescriptions are up to date and that I have enough to get thru the weekend at a minimum, ask several questions regarding my general health, and then out the door.  Hospice will take care of all my medical needs that I need that relate directly to my COPD.  They won’t supply medicines that may deal with other medical conditions.  Sidebar, we just listened to Toby Keith’s “I’ll never smoke weed with Willy again.” Smiling, fun song. All things considered, tooth pulled, living in a hotel, managing the contractor replacing the floor, and putting up with the Florida heat and humidity I am going to give the week a very solid 2.75.  The other reason the week gets a 2.75 is because very little else has changed, the coughing is about normal, tiredness about the same, and the respiration’s are staying above 20 + breathes a minute, which makes the heart work harder.

Let get the vitals out-of-the-way for the week ending 05.09.14

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

  • O2 level @ 2.5 LPM = 95 taken on 05.08.14 – I would say spot checking my O2 level this week has found on average about 91/92 range.

  • Peak Flow = 215 taken 05.08.14

  • BP = 122/64 taken 05.08.14

  • Heart rate = 122 taken 05.08.14

  • Temp = 98.7 taken 05.08.14

  • Weight = 268 taken 05.09.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.09.14, moving now to the word of the week discussion aspect.  This week we are going to talk about Expectations.  We all have expectations that we impose upon ourselves and those others have in us, today I would like to talk about those expectations.  As normal we will start with the web dictionary definition of the word:

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

ex·pec·ta·tion  — noun  1. the act or the state of expecting: to wait in expectation. 2. the act or state of looking forward or anticipating. 3. an expectant mental attitude: a high pitch of expectation. 4. something expected; a thing looked forward to. 5. Often, expectations. a prospect of future good or profit: to have great expectations

Of all of the definitions I have drawn from the Internet to use for this part of my post, this definition is one of the clearest to date.  It is safe to say that each of us with a life threatening disease face two prime points of expectations. One; those expectations that come from within ourselves, those we think and feel when we look in the mirror or set about doing a task, or two; those expectations that others have for us.  This second group of expectations is a whole big can of worms in and of itself and I will talk to that next week.  But the simplest way to address those expectations is to say FUCK THEM, but I will get into that further next week.

As kids when we do something successfully, we anticipate being able to do that again and again and again.  Once that accomplishment registers in our head it stays there forever.  We from that day forward, always have the expectation that we will always have that same level of success whenever we attempt that activity. Experience and effort, coupled with a level of success establishes expectations in our head. Sidebar: we have been listening to Travis Tritt, Trace Akins {(This ain’t no) thinkin thing}, Dixie Chicks, Lucinda Williams (Change the Locks), Garth Brooks (Friends in Low Places), and Gretchen Wilson, to name a few. The problem is that sometimes I listen and sing instead of typing. We experience in so many things, from school work, to sports, cooking, yard work, building things, carrying or lifting different levels of weight, and on and on.  Through our accomplishments and experience we find that doing things will take this level of effort and this amount of time.  That activity could be doing the laundry, cooking dinner, doing the dishes, cutting the grass, folding cloths, walking down the street, yard work, and all other manner of daily household chore or projects.  Again success breeds expectations. 

Soft smile, the aging process is a marathon not a sprint.  As we age, we gracefully and gradually come to conclusion that the process does impact our expectations, but because acceptance happens steadily over an extended period we softly slip into a lower level of self-expectations. This in my opinion is nature’s way, the way it is supposed to be.  We turn around and look the majority of our counterparts and we see the same process is taking place in them as that we see in the mirror, and because of this we collectively are okay and accepting of the process.

But when you are terminally ill this process seems to be in overdrive.  Tasks that we would have done without breaking into a sweat 2 or 3 years ago (longer or shorter depending on you), we now have to take break after break after break to accomplish. Some tasks we don’t even bother with because we may not have the breath or stamina to complete. Some of us (especially me) are embarrassed easy when we (I) don’t have the ware for all to complete a task. Sidebar: for all my great Canadian friends, I have switched gears and now have Nickelback blasting in my head LMAO, because I try to keep my posts at the PG-13 level I can’t even tell you the names of most of my favorite Nickelback songs LOLBut I am here to tell you we need to get over it, and we have to acknowledge the fact that we do need to lower our personal expectations.  We need to come to grips with the fact that our diseases have robbed us of the capabilities we once had.  To acknowledge this doesn’t mean we send out the invitations to the pity party.  It means that if we had the expectation to complete a task in 15 minutes and it now takes 30 minutes, then damn it, it takes 30 minutes. But by completing the task we have met the expectation, and this my friends is a moral and physical victory. I started this post last night around 11pm.  It is now Saturday, but since I started today I have, made the bed, emptied the dish washer, when out to breakfast, and stopped at the grocery store. Not even mentioning a bunch of little crap kinda things. I will admit that I am a bit tired, but I met my expectations.  Years ago I would not have budgeted as much time, and I sure would not have inserted as many breaks into the completion of these tasks that I have.   

Changing your personal expectations is nothing to be ashamed of it’s no reason to hold your head down. It is terrible unfair of you to hold yourself to self-imposed expectations that will disappoint yourself when you don’t complete them. BTW everyplace you see a “you” I am talking about me, if it applies to you, apply it.  COPD has robbed me of many things, and it will end up shortening my life by many years.  But I will not let self-imposed expectations which I fail to meet drag me into a deep dark hole.  I would suggest you don’t let it drag you into a hole either.

Next week I will talk about the expectations other TRY to impose upon us.  I suspect it will be just as emotional as this. 

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

 

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

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

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

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

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

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

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

 
21 Comments

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

 

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How I am Feeling for the week ending 05.02.14….

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

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

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

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

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

  • Peak Flow = 225 taken 05.01.14

  • BP = 142/72 taken 05.01.14

  • Heart rate = 112 taken 05.01.14

  • Temp = 98.6 taken 05.01.14

  • Weight = 272. taken 04.30.14

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

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

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

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

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

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

 

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How I Feel for the Week ending 04/18/14……

For the week ending 04.18.14, while I am starting it a little later than normal I will have plenty of time and few interruptions because I am a bachelor for the next 2 weeks and I am in complete control of my schedule.  So any delays are purely my fault and I take complete and total credit for them. The jukebox is fired up and today will be featuring a lot of loud shaking the windows music focusing on whatever catches my fancy and is driving.  Sidebar; So be warned a lot of Nickelback will be played today, with a good mix of SRV, Hendrix, Seether, Theory of a Deadman and Puddle of Mudd to name a few. I don’t believe I will be playing any ballads today. Also I won’t be complaining about Pollen this week, it will be hanging around for a at least a couple more weeks so no sense continuing to beat that horse, but I will say I do notice the difference between moderate levels and high levels of pollen.  So if you discount the impact of the pollen, I have had a good week. Yes SOB is still a very real and pressing issue and one that pretty much rules the roost.  But I feel better this week than I did last week.  I am going to break my trend of going in .25 increments and say that this week I feel 2.9 all things consider and evaluated fairly.  I have not changed my scale it has just been a good week. 

The week I have had 2 doctor appointments; one with Doc Infectious, and the other my monthly IVIG treatment.  The appointment with Doc Infectious was very positive.  He has created a standing (protocol) order that if I come into the office at any time complaining of the symptoms associated with having a COPD exacerbation, that a predefined series of blood tests would be taken.  In addition, I would immediately be proscribed X drugs to be delivered to home.  My Mediport would be accessed before I left the office so I could administer the necessary IV drugs.  This avoids the emergency room and allows me to stay home for treatment.  I find this to be a BIG plus.

Let get the vitals out of the way for the week ending 04.18.14

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

  • O2 level @ 2.5 LPM = 93 taken on 04.18.14 — avg daily is 92 for week

  • Peak Flow = 230 taken 04.18.14 – avg for week 220.

  • BP = 116/64 04.14.14 and 132/76 taken 04.17.14 – I will be damn if I know why there is such a big swing

  • Heart rate = 106 taken 04.17.14

  • Temp = 98.7 taken 04.16.14

  • Weight = 271.2 taken 04.14.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 4.18.14, moving now to the word of the week discussion aspect.  This week I have chosen Hospice. The definition used in today’s post comes to us via http://dictionary.reference.com/browse/hospice

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

Origin:  1810–20;  < French  < Latin hospitium hospitium

Saying Hospice to a group of folks that could be, who are, or know someone who is terminally ill is kinda like dropping the “F” bomb in a completely inappropriate place.  But there I said it. I have had very little personal experience with Hospice or Hospice care.  If you had asked me a few years ago about it, what little I knew wasn’t positive, and could fit inside thimble.  My father passed away as they were moving him to a hospice bed, my Mom passed away after spending no more than a week under hospice care, and my friend Mike passed away after 5 days at the hospice house.  Of the folks I have known, Mike was under hospice care for the longest period of time, it may have been as much as his last 5 weeks.  Mom, Dad and Mike were all deathly ill at the time of their involvement with Hospice.  And because of this I have always felt that Hospice is only short-term, weeks not months, and surely not years of care.  Being honest that was my extent of knowledge of hospice. 

But Hospice care is much more involved that my naïve thoughts.  They provide a wealth of services not only to the patient but to the family as well.  And it needs to be understood from the very 1st their job isn’t to expedite your passing, but to make your passing as comfortable as possible for you and your loved ones and friends.  I have done a tiny bit of research and have found that Hospice has cared for folks as long as 3 years prior to their passing.  Hospice provides 24/7/365 medical coverage for the patient.   You are not denied life-sustaining medications, you are visited weekly by an RN or LPN, and your medical equipment needs are met.  Hospice has trained professional social workers, trained volunteers, Chaplains, and a host of other services tuned directly to the need to the patient.  In addition there is an extensive support network set up to aid your spouse, children or family, as well as, friends.  

Other important information to have regarding Hospice is that you can opt out any anytime, and opt back it, if the need occurs. Also you are evaluated on a regular basis (every 3 months by an RN, and every 6 months by a doctor) to see if you still meet the criteria for Hospice care.  In other words Hospice will OPT you out of the program if your health warrants; you’re not declining but maintaining an even level, or if your health improves.  Look at it this way, if you going to be kicked out of something, being under Hospice Care would be high on my list. 

Some of us may cringe when we hear the term hospice used about us.  My point is that in reality at the time we may need them the most, is when they will be there for your or me.  That we should do our own research, and become familiar with the program and how it will aid us (and our families) in our transition.  

As always thank you for indulging me as I have rambled on.  I hope you have a great weekend.  If you have any questions or concerns please feel free to ask, if you want to comment those are appreciated as well.  Take care, Bill

 

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