How do I get one?

Answer:

To quote my original "second opinion" Pulmonologist, Dr. William Figueroa, you get one by being sick enough to need it but healthy enough to withstand it.  It is, as he so eloquently put it, a "finesse move".

Generally speaking, the process of receiving a lung transplant goes like this:

1.  First, you are referred to a lung transplant center, either by your Pulmonologist, General Practitioner, or by your own direct request.  It is of utmost importance that this referral be made as soon as possible for many reasons--time is the enemy, respiratory disease is often unpredictable, and patients are at great risk for opportunistic infections that can be deadly.

2.  Next, you are evaluated and (hopefully) accepted by a lung transplant center.  The process of evaluation varies from center to center and from patient to patient, but basically consists of approximately three days of testing at the center.  These tests include allergy tests, blood tests (18 vials at last count), Pulmonary Function Tests (PFTs), arterial gas test, psychological tests, lung perfusion tests, echocardiogram, heart catheterization, psychological and sociological interview, financial analysis, a stress test, the infamous six-minute walk, and others as dictated by the specific disease and/or physical condition of the patient.  Acceptance generally follows successful completion of these tests.

3.  Upon acceptance into a lung transplant program, you are placed on a waiting list.  IPF patients receive a 90-day credit upon acceptance, but others start from the day they are officially accepted.  You will at this point typically receive a complimentary beeper courtesy of a participating paging service.

4.  As time passes, you "move up the list" in categories of size and blood type until such time as you are at the top of the list for the size and blood type of a donor organ when it becomes available.  This can take anywhere from approximately two weeks to one-and-a-half to two years or more.  You hear stories of two-week waits, but they are the exception.  Typical waiting list averages are a little over over one year at small centers and about two years and change at larger, well-known centers.  Having a common blood type means you are competing against a lot of other candidates, but also will be eligible for more donor organs.  In contrast, having a rare blood type means fewer eligible donor organs, but less competition for them, so generally this situation is described by most centers as "a wash".  It works the same way for size.

5.  Assuming you can withstand the wait and don't get delisted due to any number of conditions considered by the transplant center to be disqualifying factors, eventually you are beeped and/or telephoned by the center and told that a donor organ is available.  If you are hospitalized at this point, you may be transplanted in-place or med-evacuated to the transplant center.  If you are still at home, you will generally be ambulanced to either the transplant center or to a heliport and then med-evacuated by helicopter to the center.  Much concern is focused on this part of the process, but the transplant center will usually take care of all transportation arrangements, although they may not do the best job of explaining it to you beforehand.

At this point, you are firmly in the hands of the medical team you chose way back when.  How things turn out depends on how they do, and how you do from this point on.