The elephant speaks again

Foreword: In Part One, I introduced my lung condition (Idiopathic Pulmonary Fibrosis) and my preparation for a possible transplant. The adventure continues:


I’ve just seen my pulmonologist at the Methodist Hospital today, and received a bit of a shock: apparently, I’m too healthy to be considered for transplantation at this time! This means that I will not be placed on the official U.N.O.S. transplant list for at least another three months. Of course, I was elated to learn that the numbers objectively confirmed what I had been feeling subjectively (i.e., “better”) since last May, but at the same time I was somewhat disconcerted about the decision not to list me. After all, that’s been my goal since I started the evaluation process last February. Once we made the decision that a transplant was the way to go, I basically wanted to “get it over with” as soon as possible and try to move on with the next phase of my life – whatever that may be. Being in limbo like this is very frustrating. However, things became clearer after my doctor explained the new process by which patients are qualified as organ recipients. Up until earlier this year, donor lungs were allocated strictly on a first-come, first-served basis. The sole criteria was how long you had been on the list. Because of this, wait-list time nationally averaged two years or more until the transplant surgery took place. Unfortunately, many patients who desperately needed an organ died while waiting for one to become available. As a result, UNOS changed the organ allocation process to an intricate “scoring” system in which a numerical value is calculated based on a number of factors; esentially, it comes down to how sick one is. Time spent waiting still weighs into this score, but it's no longer the sole measure. This has resulted in two significant improvements to the system; the most important is that people who are most in need of a transplant are the most likely to get one first. The second is that once your name is placed on the list, the waiting time is much shorter – on the order of three to four months. My doctor did reassure me that once my need becomes greater, I’ll be able to have the surgery in time. So, by any analysis, the news is good, not just for me, but for everyone who requires transplant surgery.

Figuring out exactly when to transplant a patient is a delicate balancing act. On the plus side, you have to be sick enough to need one in the first place. But on the minus side, you don’t want the person to be so compromised by their condition that they will have trouble surviving the surgery or the long recovery afterwards. The ultimate goal, then, is to be perfectly centered between needing the operation and being healthy enough to recover from it. In the last six months, I've apparently gone from just slightly negative of center to far enough positive that I’m not currently a candidate. This is very unusual for IPF patients, as nearly everyone continues a downward spiral once diagnosed.

So what, exactly, is going on with me? At least two factors might be contributing to my general improvement. The first and most obvious thing is that I have lost a considerable amount of weight recently as a result of dietary modification and a pulmonary rehabilitation program. Gradually, my exercise tolerance has increased; and while I’m still on continuous supplemental oxygen, I don’t seem to require as much to stay saturated as I did when I was heavier. This is all to be expected, and in fact my doctor thinks I could stand to lose another 15-20 pounds (groan!) which might help things even more.

But there’s an “X” factor that can’t be as easily explained or predicted: since last June I have been taking an experimental drug called Pirfenidone. This is one of a new class of drugs now undergoing clinical trials, and has the potential to be a real breakthrough in the treatment of IPF or other similar illnesses involving uncontrolled fibrosis. I was fortunate to be one of a limited number of people selected to participate in an “Early Access Program” to test the efficacy of this medication. Researchers, doctors, and most of all patients have been hoping and praying for years for the discovery of a “magic bullet” to provide a reprieve from the virtual death sentence imposed by a diagnosis of IPF. Perhaps this is it. But from what I have heard and read elsewhere, the results are far from conclusive – so only time will tell.

Enough for now. If you’ve read this so far, I thank you for your interest; I'll continue later.