How long can I live after I get one?
Again, it depends on a number of factors--some known and some unknown. To simply cite survival rates as commonly given is to ignore the specifics involved, which is really what you want to know about. But starting there, again statistically speaking of course, on average 75% survive the first year, and another 5% die each year after that. Of course, that 5% is of the remaining population after previous depletions have occurred, so in actuality, unless I am calculating incorrectly, the surviving number can never reach zero. There will always be 95% left of the remaining population after any given year, until, of course, that 95% equals less than one. You can't have a percentage of a single person.
But the impression you get is that after 10 years, everybody is gone. So on the surface, there must be something going on--what is it?
Well, there are a number of enemies of the transplanted state, as it were, and the best I can figure, here are a few of them:
1. Cancer--this is an unfortunate byproduct of the suppressed immune system a transplantee must maintain to prevent chronic organ rejection. The cancer may take the form of skin cancer, which is probably the most common (especially in the South), or perhaps other cancerous diseases of the blood, the lymph system, or tumors in solid organs.
2. Fungal infections--another byproduct of a suppressed immune system, fungi prosper where they can find an opportunity. Exposing one's self to aspergillus needlessly, such as by gardening or mowing the grass without protection is, in effect, asking for trouble. Aspergillosis is a very nasty thing to get. And finding drugs to treat fungal infections is a constant cat and mouse game, not unlike the pursuit of new effective antibiotics.
3. Respiratory disease--This is the big one that scared me when I was contemplating a lung transplant. I used to ask, what about Bronchiolitis Obliterans, also known as Obliterative Bronchiolitis? Do I have to go through all this only to get something very similar if not identical to what got me here just a few years down the road? From the information I have, the unfortunate answer for approximately 43% of lung transplantees is yes. New combination drug therapies have seemingly reduced this number somewhat--for example, it is felt that using Cyclosporin in combination with CellCept instead of with Imuran has yielded an improvement. Yet with this, as with almost any other disease, only time will tell. I've heard rumors that retransplantation has been an option for BO (a.k.a. OB) cases, but I've also heard that with the current donor organ shortage, retransplantation in general is a poor bet.
4. Chronic rejection--This is the most talked-about failure mode, but is usually only a major risk factor during first three months post-transplant. As time goes on it becomes a lesser likelihood, with it being less of a possibility after six months, fairly rare after the first year, and almost non-existent after two years. For these reasons, however, surveillance bronchoscopies are scheduled quarterly in the first year, bi-annually in the second year, and annually each year after that. This is primarily because rejection can be asymptomatic--you can be rejecting and not know it. More likely, however, you will feel "icky" and not know why--this is precisely when you should call your transplant pulmonologist, as it is this "undefined feeling of unwellness" that can often signal the presence of rejection.
5. Reactions to anti-rejection medications--Prolonged usage of anti-rejection medications such as Cyclosporin generally lead to hypertension and a rise in the Creatinine level, which if left unchecked, can cause kidney failure. There are medications available to help mitigate this progression, so it is important to maintain a regular clinical relationship with a transplant pulmonologist, who will guide you through these waters. In addition, you will be required to alter your diet, such as restricting your intake of salt to offset the tendency of Cyclosporin to cause retention of sodium in the body.
I am but a two-and-a-half-year veteran, so I'm sure that while there are other villains out there, I haven't discovered them, nor have I yet been officially told about them. Probably for good reason--there is a curse of knowing too much. By listing these things, I may have caused a little of that already.
So, should any of this scare you from seeking a transplant? Or does it, in some way justify your decision not to get one? Or maybe it bolsters your courage if you've been deemed not able to qualify for one--I don't know. These are difficult questions. I try not to worry about what I can't control. Well, I say that, but I probably do anyway. Hey, it's an idea.