My annual clinic appointment was today, a month late for my 2011 annual, but that’s where it belongs in the timeline. Overall it was good news, but we had some very good dialogue with the doctor about quality of life vs the PFT numbers and what the picture is now and what it looks like for the future. Prepare yourself for a long post because I really don’t want to break this one up over the week.
Good news first: I’m not dying. I’m also not expected to be on the transplant list any time soon. The rest is a big bag of mixed nuts that will take us a while to sort through. I really hope that you find this informative as an “aging CFer” to know what is ahead for those younger than me and also encouraging and transparent for those in the same inning as I am – that’s 33 for those new to the site.
For one, my PFTs are down 3% from 39% to 36%. They put me in the box for PFTs this year for the annual check-up, which measures 2 additional things: Click to continue reading this article…
I go in for my 2012 annual clinic visit today. A day filled with extra people, extra blood, and doing the PFTs in “the box.” I just had x-rays done during my ER visit in November, so I don’t have to go to the main part of the hospital for that. I’m doing my happy dance already. Technically, this is my 2011 annual because this was scheduled for December until a family emergency with the doctors canceled clinic for everyone.
You’ll see in my sidebar that I’ve gone almost 23 months without IVs! That is a personal record for me and I’m quite happy with that. However, I do feel like my quality of life is decreasing as a result of not hitting the bugs 24/7 from the inside in so long. Recent cultures have shown that I’m no longer resistant to several meds, so we will discuss the possibility of really getting into shape. Beautiful gets concerned when I cough this much, but since I keep up and I’m not wasting away, the numbers haven’t indicated that I need an intervention.
Today we find out what is behind door #1.
Several times last year, I was feeling pretty bad, but my PFTs continually rose all year. I don’t think that will be the case, but I’ve been wrong many times before about PFT predictions. No one can blame working too hard this time, as I take entire weekends off now and I generally go to bed between 10 and 11pm, yet I still “wake up” exhausted between 6:30 and 8:00am. I’m fighting something, and I don’t want anything affecting my health once we have our first placement.
The way we see it, I’ve been resistant to these drugs for years, so we can see why the doctors are always hesitant to put me on the 2-3 that still work. If they don’t work the next time I have an infection that requires an intervention, I would go downhill – fast. Since more meds are on the table now, we don’t see why we can’t discuss putting them out into play.
Ah, well. Enough thinking about that until I get my PFT results back. Stay tuned on Facebook for the results mid-morning, Eastern time.
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CFers (as a whole) have to overcome a lot of the rest of the world’s fear or dislike of visits to the doctor while every kid would rather be playing outside than going to the doctor. We go every quarter, or even more often, so we have to be used to it and just see it as a part of life. Those who have CF centers who put them on IVs at the first sign of PFT drops have to get used to the hospital. It’s called “life” for us. Heck, I get excited to see the doctor when it is not a CF-related issue.
Then there is the rest of the world. We’ve got the stereotypical man who won’t see a doctor until the bump on his neck is the size of a softball, he is in advanced stages of prostate cancer, or any other number of ailments that can be fixed easily if attended to early on. My dad is somewhat like that, but I think life with me has rubbed off on him a bit so he doesn’t take it to the stereotypical extreme.
Then there is Beautiful. I thought it best for everyone’s sake to get her approval for this, since this is almost as much about her as it is about me now (all clear – good!). She loathes going to any doctor. They make you take your clothes off. They look at every freckle like it’s cancer. They put instruments in uncomfortable places. UGH! Did I capture your disdain accurately, Honey? She says, “almost… continue.”
Click to continue reading this article…
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What a day! What a night!
We got to clinic to another empty waiting room and got back for PFTs before too long at all, as usual. You’ve probably guessed by now that I have very little tolerance for being scheduled when I have to sit around and wait for other people, so the first appointment is the way to go. It meant getting up at 4:30, but it’s worth it.
I got my first look at my FEV1 after my first blow: 38% (last clinic was 35%)! I went again with even more force and got a 35%. Remembering our long PFT in the Spring when we determined that I was collapsing my airways by blowing too hard, I backed off for my 3rd attempt: 39%! Boo, yeah! That sent me to rockstar status, as it was my highest number on the computer’s history visible on the printout. My lowest was 27% when I was on a placebo for a drug trial that required stopping my AZLI study drug. Bad move!
Since last clinic, I’ve gained over 200mL of volume, but I still feel like crap. Our only guesses are that I was coming off fighting off a cold last weekend when I had a fever or else I’m getting so much gunk loose, it’s making me feel worse than my numbers show. Sue thinks I’m pretty funny to feel bad and then post numbers like that. It seems like when I put weight on how I feel, they’re interested in the numbers and when I concentrate on how my numbers are, they’re interested in how I feel. Whatever, my IV streak continues (see the sidebar counter).
I also asked for a t-shot blood level, flu shot, and my quarterly Boniva shot. Anyone else getting the Boniva shot? Click to continue reading this article…
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My annual clinic appointment was today, a month late for my 2011 annual, but that’s where it belongs in the timeline. Overall it was good news, but we had some very good dialogue with the doctor about quality of life vs the PFT numbers and what the picture is now and what it looks like for the future. Prepare yourself for a long post because I really don’t want to break this one up over the week.
CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.