The Transplant Process

For CF, lung transplantation is simply another treatment...it is NOT a cure. Lung Transplantation is basically the last resort for CFers, and it's only an option when all other forms of treatment have been exhausted AND a transplant will probably improve the quality and quantity of life. Transplantation is ALWAYS the choice of the patient.

Although I've discussed most of this before, here's a more detailed overview of the transplant process. In my mind, there are basically seven steps (although that may differ between transplant centers)

Pre-Transplant:

1) Evaluation - the patient and medical staff have determined that the patient may be in need of a transplant in the near future. There are many transplant centers in the US, and finding one that accepts a patient's insurance and will accept a patient as a candidate can be tricky for some. Fortunately, we did not have any issues with this step. Each center has a different evaluation process. Duke requires a week-long series of tests and interviews.

2) Candidacy - the transplant center has identified the patient as a candidate for transplantation. A patient may be a candidate for a period of time without being listed depending on his/her health. Most transplant centers (like Duke) require candidates to complete a certain number of days of physical therapy and prove that they are physically capable of having a good chance at survival before they are listed. Candidates are encouraged to relocate to within two hours of the transplant center.

3) Listing - the patient's health is to the point where he/she either needs a transplant or will soon need a transplant. Most patients are placed on the transplant list and "activated" (see next step) around the same time, but some are listed and not activated for months or even years depending on the progression of their disease (many CF patients tend to plateau at certain points, and can be listed but not activated).

4) Activation - the patient has entered the window of opportunity in which he/she is sick enough to fall under the criteria at the top of this post, and not so sick that he/she would not likely survive the surgery and first year after. The wait for the right set of lungs begins, which could be the same day as the activation, or it could be months or years (many transplant patients die before receiving their new organs). Deactivation (while remaining on the list) can take place if the patient becomes too sick or weak to still be considered a candidate for the surgery. Some patients bounce back and forth between activation and deactivation. Once activated, patients are required to relocate to within two hours of the transplant center.

Transplantation:

5) Surgery - when the transplant center is notified by UNOS that a set of lungs had become available, a call is made to the two patients who most closely match the available lungs. Both patients are prepped for surgery while the transplant team evaluates the lungs and determines if they can be used. If they are good lungs, the patient who is the best match goes into surgery. Surgery at Duke usually lasts between 6 and 10 hours. I prefer not posting the details of the surgery because it's very intense (feel free to look it up on your own). We've been told that it's equivalent to a severe, blunt-force-trauma auto accident.

Post-Transplant:

6) Recovery - (the following is true for best case scenario) patients come out of surgery on a ventilator, are brought out of sedation over a 24 hour period, are up and walking the day after the surgery, spend less than a week in the ICU before moving to a "step-down" unit, are out of the hospital within 2-4 weeks, and are required to complete a certain number of days of PT before being totally released to return home. PT actually begins as soon as the patient is awake. Lots of complications can arise...most of them are very life threatening.

7) Life - (we're still learning about this part of the process) patients are sent home with a whole new set of meds, new equipment and a new way of living. Lots of steroids and immunosuppressant drugs. Avoidance of germs, sick people, and crowded places. A new, clean (and easy to clean) house. It's basically a trade-off of one way of living and drugs and treatments for another. (But, we're not complaining!)

I suppose there is a 8th step...death. CF is a death sentence...there currently is no cure. Lung transplantation is simply an attempt to prolong and improve life. Many CFers do not make it beyond 3-4 years with new lungs, and most CFers do not make it past 8 years. A second transplant is sometimes an option, but it's a difficult option. Infection and/or rejection are the two leading causes of death for a transplant recipient.

Anyway, I hope that gives some helpful info. As always, use the "Transplant" label over there on the right side of your screen to see what else I've written concerning organ transplantation, or visit UNOS.org.

Thanks!

Nate