I am beginning this weeks’ report at 6:07am, so hopefully I will get it complete and out to you by COB (close of business). In keeping with recent trends on my part, the jukebox is fired up, and we are starting with some old school Buddy Guy. Because I know I will be doing this in spurts throughout the day I will provide musical updates as well.
Last week I rated the week a 2.25 and I said that was a weak 2.25, this week it has hovered between 2.25 and 2.50. The reality is that I have been making very little progress, and just barely holding my own. Well there was a reason for that. It has been determined that the medicine regiment prescribed for me upon discharge from the hospital has not been effective against the infections in my lungs. In fact the prescribed medicines have had no impact on the infections in my lungs post hospitalization. On the 19th a new sputum test and blood work done. Results of these tests (02/24/14) showed that the Merrem IV and TOBI were having no impact, and different medicines were ordered (Cefepime via IV and Colistimethate via nebulizer) to fight the infections. It was determined on the 25th that I was stable enough to not required hospitalization at this time, but I was to be monitored and re-evaluated on March 3rd. I have been instructed to “rest and take it easy,” can I tell you what a PIA (pain in ass) that is, I do rest and relax quite poorly. But having said all of this, I am going to rate the week 2.5 because I feel I am beginning an upward trend.
Having stopped to do a couple of chores we have moved on musically to Brooks and Dunn.
Let get the vitals out of the way for the week ending 02/28/14
INR = 2.6 taken 02/24/14
O2 level @ 2.5 LPM = 94 taken on 02/25/14
BP 112/60 = taken 02/25/14
Heart rate = 101 taken 02/25/14
Temp = 97.8 taken 02/25/14
Weight = 274 taken to often
This week I had appointments with the big three (Doc Head, Doc Lungs, and Doc Infectious). The appointment with Doc Head was good as always, she has a way of drawing me out when I need to be drawn, and sitting quietly when my mouth and brain are in overdrive. The appointment with Doc Lungs was not overly productive, we rehashed the finding of Doc Infectious, and I got his concurrence on the path Doc Infectious was going. Then I had my appointment with Doc Infectious, where we talked about what happened post hospitalization, and what were the future options for drug therapy. It was explained that there are fewer and fewer drug options available, and that with each future infection, it will take a jumbling of medicines, to pinpoint the ones that will be effective against whatever strait of the infection I am currently fighting. It was an awareness conversation. One I appreciated, and one that needed to be had. Notice I didn’t say it was a fun conversation.
As I had reported last week I was and still am having significant issues with the SOB (shortness of breath), and an overall lack of energy and desire to do anything (all the symptoms that put me in the hospital originally) I have managed to play cards a couple of times a week and I have been kicking Art’s butt, which is a good sign on hundreds of different levels.
So ends the technical aspect of my “How I Feel This Week” report moving now to the word of the week discussion aspect. I have grown tired of Brooks and Dunn (after 11 songs) and have moved on to Cheap Trick.
Cheap Trick only lasted about 6 songs, and I have moved deeper into the “Blues” with the Queen herself Aretha Franklin.
This week I want to speak of self-advocate. Something each of us needs to be. This week definition is taken from the online version of The Merriam-Webster online dictionary. And can be seen in its’ entirety at:
Full Definition of ADVOCATE: 1 — one that pleads the cause of another; specifically: one that pleads the cause of another before a tribunal or judicial court, 2 — one that defends or maintains a cause or proposal, 3 — one that supports or promotes the interests of another.
Examples of ADVOCATE : 1 — a passionate advocate of civil rights, 2 — She works as a consumer advocate. 3 — He has paid respectful attention to the home schooling movement by meeting with its advocates and endorsing their cause. —Elizabeth Drew, New York Review of Books, 10 June 2004
First Known Use: 14th century
The key to this definition is the fact that I have added SELF to the word Advocate, meaning you have to stand up for yourself. You are the single most important aspect of your health, you know your body, you know how you feel, and you know the different aspects of yourself. If you have suffered from this disease long at all you know how you’re doing, you know when you having a bad day, you know the signs and symptoms leading up to an exacerbation of you COPD, and this awareness will help you as much as any doctor you have on your team. Your doctor depends on you to tell him or her, what is working what isn’t working and how you really feel. If you have an appointment and you tell the Doctor you are feeling fine when in reality you feel like shit. Your doctor will treat you as if you’re feeling fine. If you tell him you feel like shit, then your doctor has a different set of values to work from. You must tell him, you must be able to say to you Doctor I don’t believe the drugs or therapy is working, you have to sit or stand for yourself. I am sure 99.9 percent of you have more polish than I do, and you can use that polish to your advantage. To have as long and productive life as possible with this disease you must be your own advocate. If by some chance you haven’t figured out what leads you to an exacerbation of your COPD, you need to start learning these things so you can be your own advocate. And as you learn you need to share this with your significant other, so they can see the signs when you choose to ignore them (which I have been known to do). Again the key is to be your own advocate. To know what is going on in your body, and to be able to communicate that to the people who need to know. So when the doctor asks you “How you doin?” you can say something other than “fine” If you’re not feeling fine. Folks I am not saying being a self-advocate is easy, in reality it is extremely difficult. But I am saying start, work on it bit by bit, build your confidence, and trust yourself. As you build confidence, you become more aware of yourself and you will find it easier and easier to be a self-advocate. Some will take to it easier than others, and some won’t take to it at all. Again the key is to try, to be there for yourself. The doctor doesn’t want to hear fine if you’re not feeling well, he really wants to know, but unless you look like death sucking on a lifesavor, he will have to believe what you tell him.
I was discharged from the hospital on February 11, 2014. I was sent home with a prescribed list of drugs to use, with specific intervals, for a specific duration. My 1st follow up with Doc Infectious was on February 19th, at which time I advised him that I was still feeling poorly, and in fact that I felt I had made no improvement since being discharged. I cited several reasons why I felt, if anything like I was back sliding. Doc Infectious countered with the fact that normally it takes 3 or more weeks post hospitalization before I am “right” and that patience was needed to allow the medicines to do their magic. I was persistent, even a PIA, and told Doc Infectious that yes he was right historically speaking, but normally after being on a drug protocol for a week post hospitalization, I had some feeling of being better, I didn’t that day! It was thru my being a self-advocate that Doc Infectious said okay, lets’ do another sputum test and some more blood work and see where we are. It was those sputum and blood tests results that showed that the drug regiment I was under was not effective, those results were why my drug regiment was changed mid-stream, and this all happened because I was a self-advocate.
Folks, I don’t claim to know it all, but I have been suffering from COPD long enough to get a feeling for my body, to know the signs. I have done some reading, and a bit of studying. And I have a big mouth, and I can be a PIA. You don’t need a big mouth or to be a PIA, but you need to know you, from there you have knowledge, and knowledge is never a bad thing. This is just something I feel you need to give serious thought as I have done.
I have completed my report with musical selections from Eric Clapton’s Crossroads and other tunes from the Cream days. I hope you have a pleasant day.
If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon. Take care, Bill