When do I get one?

Answer:

The easy answer is as soon as possible.

The complicated answer is when several mandatory conditions are satisfied:

1.  You are first in line--meaning you have top seniority, if you will--for both size and blood type for the next donor organ available.

2.  You are called and/or beeped, and can get to the transplant center within the allowable amount of time (generally under 4-5 hours).

3.  The donor lungs are inspected and deemed appropriate for transplantation.

4.  The surgical team starts the operation, and replaces your old lung (or lungs) with the donor organ(s).

Again, this all seems obvious enough.  What is not obvious is the mechanism necessary for all of the above to happen, i.e. when to get listed, or in other words, how to start the clock.  This is extremely important, especially for patients that have an aggressive lung disease, such as Idiopathic Pulmonary Fibrosis (IPF).

The common thinking among Pulmonologists is that lung transplantation is a "finesse move", in that "you have to be sick enough to need it but healthy enough to withstand it".  Unfortunately, this approach can be potentially fatal to patients with IPF and other unpredictable and aggressive lung diseases.  Such patients may look OK one day and find themselves in a downward spiral the next.  Often, by the time outward symptoms of the disease present themselves, it is too late for such a patient to start on a one-to-two year waiting list for a lung transplant.

The advice I have given when asked, and experts in the field now recommend, is that contrary to policy common with emphysema and Alpha patients, IPF patients need to be listed as soon as they are diagnosed, and transplanted as soon as a donor organ for which they are entitled becomes available.  Not following this approach has been largely responsible for the extremely small population of successfully transplanted IPF patients to date.

A word about the commonality of IPF--current estimates are that approximately 3 out of 100,000 people contract IPF, though many experts feel that this is an overly conservative number, for many cases go undetected due to a lack of post-mortem confirmations when other respiratory conditions have been present prior to death.

In contrast, Hodgkin's Disease affects approximately 7 out of 100,000 people, and this is considered a more accurate estimate than that for IPF.  It may well be possible that the occurrence of each in the general population are roughly the same.