Where do I get one?
You get one at a transplant center. First you have to be evaluated and accepted, and then placed on a waiting list. Then you have to wait until you get the call, and at that time you go to the center and they operate on you. I know this sounds simple-minded, but there is an additional point I want to make about double listing.
Double listing is the process by where a transplant candidate applies to two or more transplant centers for a transplant. For this procedure to be effective, these centers need to be in different Organ Procurement Organizations (OPOs). OPOs are regional districts within which donor organs are allocated according to the guidelines established by the United Network for Organ Sharing (www.unos.org).
By double listing, a patient that does not have the benefit of a Status Level System--such as lung transplant candidates--can in some way increase their chances of being called for a transplant. This is critical for patients with fast acting or unpredictable diseases such as IPF. On the other hand, emphysema patients, for example, are able to better withstand the average waiting list time encountered in a medium-to-large transplant center. For those patients that cannot withstand the two or more year wait, double listing at two (or more) centers in different OPOs increases the odds that they will be called. Ideally, the second center, normally being farther away from where the patient lives, should offer a shorter waiting list to be of any real help. It is important to keep in mind that being transplanted at a far location will involve a substantial amount of time in that location following the transplant, so living plans should be made for such a development.
Some may have problems with the ethical issues involved with double listing. The plain truth, however, is that the present donor shortage makes such measures necessary, for without them, there might as well not be a transplant treatment available for a significant number of candidates, for they would never get the call. This constitutes a very insidious form of discrimination against fast acting respiratory diseases, and for that reason alone, such measures are justifiable.
Some discussion of the ins and outs of double listing are in order. When you join a center, the waiting list clock starts ticking. If you join two centers at the very beginning, then two clocks start, and the time accrued in each is similar if not the same. If, however, you decide after one year to double list at another center, then a decision must be made as to how to handle the accrued time. One can simply start a new clock at the second center, thus preserving the one year of accrued time at the first center. Or one can move the accrued time from the first center over to the second center, thus effectively starting out there with one year in hand, and restart the clock at the first center from zero. This second approach would be advisable if the second center has a shorter list than the first and time is getting short. Obviously, it is better to double list at the beginning if at all possible.
Generally speaking, if you are accepted into a transplant program at one center, then the second center will accept most if not all of the test results and accept you into their program without too much additional hassle. If, however, you have a complicating condition, they may want to ascertain for themselves the extent of this condition, so some additional testing may be required. It varies from patient to patient, and from center to center.
It should be emphasized that there are many hospitals that perform transplants, but there are comparatively few that perform lung transplants. And of those, there are even fewer that have success rates above roughly 60%. There is, simply stated, no substitute for talent. So much is involved in a successful transplant, and none of it is obvious to the casual observer or even lung transplant candidates themselves. From proper assessment of donor organ viability to careful and skilled surgery and follow-up, it is the rare transplant center that can put it all together. But when they do, their success speaks for itself, and you generally find a strong team ethic, one that is intoxicating in its enthusiasm for saving lives. If you do not get this feeling from the center that you are either considering or are presently listed at, then it is imperative that you seek an additional listing at one where you do.