Transplantation - When is the Right Time?
Lung transplantation is the final treatment for patients with CF. Given the limitations of lung transplantation, this treatment is viewed as "life-extending" rather than "life-saving." With this is mind, the question of when to undergo transplantation is a hot topic of discussion for both physicians and patients.
Lung transplantation should be viewed as a process beginning with discussions with one's primary physician, moving on to a referral to a transplant center, maneuvering through the transplantation evaluation, waiting through the listing time, and then ending (although it's really a new beginning) with the transplant surgery itself. Many factors can influence this process at every step. Some examples include the referring physician's comfort with transplantation, the culture of the local transplant center, proximity to the transplant center, and the listing procedure and local waiting times.
Many studies have been done in recent years to identify who is ready for transplant. Because CF lung disease does not always progress is predictable ways, these studies provide some clues, but not a formula for identifying someone who should get new lungs. In addition, the individual who is considering lung transplantation should be a key part of the decision making as to when (if
ever!) is the right time.
Some guidelines for deciding when to pursue transplant can be suggested. First, talk to your CF doctor about transplantation. If transplantation is in your near future, learn about your local transplant center(s) and what is going on in your organ donation region. Second, identify which health factors are important for you and your doctor in the decision to refer for transplantation and if those things are getting worse, consider being referred for transplantation. Third, recognize that going through evaluation and going through transplantation are two distinct processes; it may help to go through the evaluation in order to learn more and feel more comfortable with lung transplantation. Finally, recognize that there is no one right time for transplantation, and that the decision to undergo transplantation should be made jointly by the referring physician, the transplant center, and the transplant recipient.
Reprinted with the permission of Cystic Fibrosis Reserach, Inc. © Cystic Fibrosis Research, Inc., 1999-2008
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