Transplant Guidelines

I've had a couple of people ask me if there is a "concrete" line that you have to fall beneath to be considered for a transplant. The answer is yes and no. Each CF Facility and team of doctors develop their own guidelines. Or rather, the transplant centers develop their own guidelines. However, it's done with the help now, of UNOS (United Network of Organ Sharing---See side link).

It used to be that patients would get transplanted based on where they "sat" on the list. The patients at the top would get 1st priority if a set of lungs became available. Now, UNOS has developed a lung allocation score that is given to each recipient and it determines when you get transplanted. Your score must be a certain # in order to be listed. Before these guidelines were developed by UNOS, CF and transplant centers could basically decide themselves if the patient was sick enough to consider a transplant.

Typically, CF patients start considering a transplant when their lung functions have dropped below 50%. (or maybe lower depending on that patient's baseline numbers). For me, my lung functions stayed in the 40% range for many many years. That just ended up being my baseline. However, other factors do play a role in considering a transplant. One would be oxygen. If you are on oxygen 24 hours a day, you should already be on the list...period. Don't let it get that far!!! Often, patients who are not able to do much activity and when their CF interferes with almost every aspect of their life, then a transplant should definitely be considered, if not before then. Another key indicator is the O2 saturation. Typically, if your O2 sats drop below 90%, you will need to go on oxygen. So obviously, when this happens, a transplant decision needs to be in the works. Also, pay attention to what your 02 sats run when you are exercising or just doing daily activities. Some patients don't realize that when they are active, their 02 sats drop dramatically compared to resting at home. My parents purchased a portable O2 monitor after I started on 02 at night. It was very helpful and sometimes helped me determine when I needed to go in the hospital. Be careful when doing those activities. If your 02 level is not sufficient enough, that can be very damaging to your heart, brain, and make it more difficult for you to perform those certain activities. If your health gets to this point, choose your health over embarrassment.

I've found that some CF/transplant centers don't "push" the issue of transplants as much as others. Sometimes it might be more of the patient's responsibility to approach the subject. That's why I STRONGLY encourage each CF patient and CF parent/guardian to be on the lookout for these indicators and discuss them with your CF team. You can always get second opinions elsewhere. In addition, some CF transplant centers may not always be your original CF center and may not be even in the same state (which is usually the case).