What kind of long-term problems will I face?
Well, this is kind of a bonus question. A luxury, if you will. We should all be so lucky as to get to a long-term post-transplant position where we have to consider this one, right?
I am in the third year, with my third anniversary coming up. I already see, for example, some of the slower-acting cumulative effects of Cyclosporin--ironically the very drug that allows a transplant to be possible--but so far it appears that its quietly menacing tendencies are, from what I can see, manageable. You learn, however, that they don't always tell you bad news before it hits. Sometimes, they don't even fully explain the good news. Such is transplant medicine, depending on where you are transplanted.
So, what are these subtle annoyances?
1. Retention of sodium--Cyclosporin drives up your blood pressure, and allegedly can be handled with a no-salt diet. By that I mean, you have to know just how much sodium is in everything you eat, and table salt is history.
2. Elevation of blood pressure--This may be mostly related to the salt issue, but I think not. Over time, treatment for hypertension in the form of medication seems to be an almost certainty. I've avoided it so far.
3. Elevation of Creatinine level--Your kidneys are not all that happy with Cyclosporin, and again, over time, your Creatinine level goes up. As to how high and how fast, I am not yet clear, but at some point out at around the 4-5 year point or perhaps beyond, apparently some form of mitigation becomes necessary, be it medication or something I've not yet imagined (or been told).
4. Increased Cancer risk--Being immune-suppressed, or I guess more properly, immunosuppressed (I hate that word), means that cancer--already blazing its way through the general population--gets somewhat of a head start. So you stay out of the sun, use SPF 30+ if you must go out in it, avoid toxic substances, and eat fat-free foods and other generally healthy things. What else can you do?
5. Bronchiolitis Obliterans (also known as Obliterative Bronchiolitis)--This is the one that you read about at some point prior to your transplant and get all depressed. I was almost afraid to ask about it, for fear that I would jinx my chance of even getting a transplant. But it's always in the back of your mind--if after going through all this, will I get it? Better anti-rejection and immune-suppression drugs have reduced the percentage of lung transplantees that will get it, but the numbers are still significant (roughly 40% in 7-10 years). Plan on worrying about it after about 5 years, and hope that they get a handle on it by then.
6. Mental issues--This can be interesting. You have a terminal illness, you get saved, and then you develop post-transplant depression. Not survivor's guilt, because you were the only one at risk. But after all the hoopla, and this is apparently a tough one to predict--they thought I'd get it, but that only shows how difficult it is to know how any given patient will react--some patients have issues with the foreign organ, the specter of death they just witnessed, the post-transplant routine, the life they now have and the life they used to have, and God only knows what else. Certainly there are post-traumatic stress syndrome-like issues both for the patient and the family, and these take time and could probably benefit from counseling. But the transplant center tries to anticipate these demons prior to the operation, and if they feel there is a tendency, it can factor into their decision to approve your evaluation (or so I've been told). As you can imagine, this is a major event, and as such, takes a toll on everybody. For me, the bottom line is that you have to want to live, and you have to want to fight for it. If you have that core will, then you should be fine.
That's about it for now. I'm sure that there are certainly other issues not yet divulged that I will discover as they miraculously appear in my life, and they will be duly reported. If you have experiences that bear on this topic, email me and I will include them. This also goes for any other subjects covered by this site.