Bag of Mixed Blessings

So this article popped up in a few of my groups recently & on Facebook pages I follow (like The Lung Transplant Foundation‘s page).  I found this intriguing for a few reasons.

The first is the prospect that this could guard against rejection when I’m transplanted.  The second is the prophylaxis sustains protection against rejection.  The third is my first local pulmonologist (who just moved to Florida) saw a large clinical study in around 2011 or 2012 (I don’t remember exactly) & suggested we try this prophylaxis to ward off bronchitis episodes. (I think it may have been this New England Journal of Medicine study he put me on to originally).

He found that in COPD patients that their overall health increased with azithromycin prophylaxis.  At that time, I was getting 3-5 episodes of bronchitis annually. (I always seemed to get at least 2-3 a year no matter what I did & this was even before I started Rapamune.  I can’t say that Rapamune made me any more prone to them because for me I was already predisposed to both bacterial & viral episodes).  I may get one or two every few years since taking this regimen 3 days a week & when I do I am able to catch it alot earlier.  I do feel it makes me a lot healthier.

I don’t get any side effects, at least none I’ve noticed from this regimen. I know there were a few concerns because the FDA issued a blackbox warning on Azithromycin in 2013 but I am closely monitored while taking this & have never experienced the slightest heart abnormalities that they report. Which is of course, not to discredit the warning, but to say I feel the risk for me is a balanced one.  I have a few other drugs that have been black-boxed (but some are no longer) as well, but it’s definitely something I would never take unless advised by my doctor. This is something neither one of us would have tried had it not been for my incredibly frequent & rough bronchitis episodes.

I do attribute both Rapamune & Azithromycin for continuing to keep me healthy for several years. Any side effects I have from  Rapamune are manageable for what they ward off.  A minor nuisance every so often. These years could have led to more decline had I not taken either drug. I mean that with sincerity not because I’m “pro-pharma” but because I didn’t really expect either one to do anything. Just figured it wouldn’t hurt to try. Those calculated risks paid off.   Now it not only gives me comfort that I made the right move from the start, but I find it exciting that it could also help me post transplant.

I will have to come off Rapamune if I am transplanted. As you can see (in the link I just highlighted here) it’s black-boxed for lung transplant, but…it also it affects wound healing. Even though it is an immunosuppressant used in kidney transplants, it’s not suitable (at least per the prescribing info I just highlighted) for lung transplants because of that black-box warning.  Since no one knows when the call for transplant actually comes, I’d have no choice to go off the medication because I need to be off it at least a month prior to surgery of this magnitude, period.

I am also hesitant to discontinue treatment because even though I am experiencing decline again, it’s been held in check for a long time & the drops in my lung function were considerably less than prior to treatment.  The one time I had to come for a surgery in 2010, I felt fine until I was on week 5. That’s when I started noticing my breathing becoming a bit more ragged, and my energy level was not what it was before.  So while it isn’t immediate, it is a concern because I can feel the difference.

Of course, I know this means that if I do get sick more quickly, then it will bump up my allocation score, but I will also feel the effects.  I trust my team, but when I spoke with my transplant pulmonologist prior to my evaluation, he said since it was clear it was helping me he was going to try & keep me on it as long as possible.  How he means to do that, I guess I’ll find out when I discuss my evaluation results after Labor Day.

I just admit that’s the hardest prospect for me to swallow, because this drug was the life preserver I needed 5 years ago. It is also doing well to keep my kidney tumors from Tuberous Sclerosis Complex in check, so I can just do battle with LAM instead of both diseases like I was.  I was concerned too because if the kidney tumors get aggressive again, that will make the transplantation even more difficult when it happens because of the stress to the kidneys.

Prior to treatment with Rapamune, I was having kidney embolizations every 2 years because my angiomyolipomas were too big, too aneurytic, & putting me at too high a risk for kidney bleeds.  That’s not something I want to go back to either.  My last embolization was in 2010, shortly before I moved to Pennsylvania & it was for tumors that were right on the line of the threshold between watch & wait & plug the son-of-a-bitches. At the time, the data wasn’t present from the studies yet to know if Rapamune would shrink them in time, so it was recommended as a precaution I get them embolized. Which I adhered to because I’d never want to risk a kidney bleed because it might mean I’d lose a kidney.  When you have 2 not-so-hot kidneys to start out with, I tend to aggressively protect them.

I trust my team to make the right decisions.  But it’s funny how I can read an article like the one above & be over-the-moon about how I was ahead of the curve, only to have it trigger discussions & thoughts on other important agents in my present “cocktail”& how it would feel to me should I lose a major one.


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