by Don Woodall, kidney recipient
As a kidney transplant recipient, I would like to share with people considering organ transplantation some thoughts on managing the pre-qualification phase. The number and type of medical tests needed to qualify for a transplant will vary depending on the organ being transplanted. All candidates for transplantation, however, must complete a series of tests designed to evaluate their suitability for surgery and susceptibility to certain diseases. The prospect of so much testing can be intimidating. I recall having been so turned off by the pre-qualification checklist, that I postponed taking the next step several times. This article contains a few suggestions to help the transplant candidate surmount this hurdle.
The most important thing to keep in mind is that you, the potential organ recipient, must take ownership of the process. As the person with the most at stake, you are ultimately responsible for getting things done. If you are unable to do this yourself, it is imperative that you get a loved one to act on your behalf.
A number of medical professionals may help -some more and some less. Among them may be your pre-transplant team, or primary care physician or dialysis team. The pre-transplant team may refer you to specialists who will perform the required tests. Sometimes being on good terms with a doctor's administrative assistant can make all the difference. This could be the point person who executes the mission-critical task of forwarding your results to the transplant team.
Many of these medical professionals are extremely busy. They are responsible for the care of many patients and may not remember and need reminding or for you to do most of the work.. Their top priorities may not always include you. Your number one priority, on the other hand, is crystal clear. Just because you've completed a test, it is unwise to assume that your results will automatically be sent to your transplant team. Check in with your transplant coordinator to confirm that he has received the results of any tests you have completed. By cultivating a close working relationship with your PCP's assistant or secretary, you might increase the likelihood that your test results get forwarded quickly to the transplant team.
Networking can prove to be a useful component of your pre-transplantation game plan. Talking to people living with transplanted organs is an excellent way to increase your understanding of the many facets of transplantation. Moreover, by exchanging ideas on this subject you can reduce the stress and anxiety associated with the prospect of undergoing major surgery. Your medical team members know dozens of people who have gone through the whole process from qualification to surgery. Chances are good that your friends, family and co-workers also know transplant recipients. Get them to put you in touch with some of these folks. If you are reluctant to impose upon strangers, consider the following conclusions which I have drawn from my experience: people, in general, enjoy helping others and transplant recipients, in particular, tend to speak willingly and openly about their experiences.
My networking efforts led me to two individuals whose advice proved to be particularly valuable. Through a co-worker, I met a woman who had received a heart transplant. She had been wait-listed at transplantation centers in four states. She informed me that most centers use similar qualification protocols, and, with the patient's permission, readily share patient information with each other. This inter-center cooperation means that one can save time by not having to repeat the testing in order to get listed at different centers. Once she was listed at one center, she requested that her coordinator forward her test results to the coordinators at the other centers. She still had to be seen and examined by the transplant team at each center. In some cases she had to undergo additional center-specific testing.
I found another networking contact through my nephrologist. He introduced me to a kidney transplant recipient who allayed my concerns about completing the tests in a timely manner while working full-time. This patient shared with me his strategy of dedicating one week of accrued vacation time to complete the entire series of required tests. Learning about the experiences of these two individuals positively changed my perspective on the pre-qualification process.
On the surface, the road from a diagnosis of organ failure to the completion of the transplantation qualifying process may seem long and tough to navigate. It is important to recognize that the results of the tests help the transplant team determine whether the candidate is physically fit for such a major operation. A practical course of action includes taking responsibility for the completion of the necessary steps, following up with all parties involved in the process and communicating with people living with transplanted organs.