By Rebecca Hayes, LCSW
Working toward a transplant is a long and overwhelming process. Many of you may be wondering what getting on a transplant list really entails. Read below for some great information.
1. Get information from the experts already in your life
Ask your nephrologist and your dialysis team members (if you are on dialysis) for basic information about transplant. They may have some initial impressions about whether transplant would be safe for you, and what the process is like at transplant centers near you. They may also start a referral for a transplant evaluation. Your dialysis social worker or nurse can share reading materials or websites, or help you meet people who have been transplanted.
2. Explore transplant centers on your own
You can also contact a transplant center directly to start a referral. You can search for transplant centers in your area by going to the United Network of Organ Sharing (UNOS) website, http://www.unos.org/members/search.asp. UNOS also tracks data on specific transplant centers. You can learn lots about transplant centers, including how many transplants they do, their outcomes, as well as average waiting list times, by puttering on their site, www.transplantliving.org.
3. The transplant evaluation process
Once you connect with a transplant center, you will be scheduled for a transplant evaluation. The order of what happens next varies by center, but the goals are in general the same. You will learn more about what is involved with transplant. The transplant team also needs to learn about your medical history and current health in order to decide if you are a "transplant candidate." In other words, the transplant team needs to sort out whether transplant will improve your health and be safe for you in the long run.
So what does that look like in practice? At some centers, including my own, you speak by phone with a transplant nurse coordinator first. You then complete a bunch of seemingly random medical tests before your evaluation (more on this in a minute). At other centers, you go to the evaluation first, and then get a long list of tests to complete. Either way, these will be required before getting to the waiting list.
The transplant evaluation day is overwhelming. You may attend a class to learn more about transplant. You meet with a whole team, get lab tests done, and may have additional meetings too. Transplant team members include:
Some centers do this all in one day; others take a couple days. I hope you walk away with more understanding that the goal of transplant is to improve your health and your quality of life, but that it is a treatment, not a cure, with its own set of hassles and risks. If you can, bring loved ones with you to serve as extra sets of "ears" to your evaluation, this helps later when details are a blur.
So what are all those seemingly random tests about? Here’s the lay-person's version:
First, the surgeon must determine if the surgery itself is safe for you. This is why getting the "OK" for your heart, your lungs, your circulation, and even your weight may be needed.
In addition, after the transplant, you will take medicine to keep your body from fighting off (or "rejecting") the new kidney. If you have underlying illnesses, including infection or cancer, these can be harder to treat after transplant, so it’s important to learn ahead of time about your overall health. This is why tests like colonoscopy, PAP smear, prostate exam, and dental exams may be required.
You will not leave the day of your transplant evaluation and be on the waiting list. You will know what needs to happen next.
4. Learn more about living kidney donation
You will leave your transplant evaluation with information about the long kidney transplant waiting list. A living kidney donor is almost certainly the best way for you to get a good transplant quickly. Your transplant center can help you learn more about what would be involved for a potential living donor, or might be able to help you practice asking. You can learn more about living donation at livingdonorsonline.org.
5. Transplant candidacy
Once you have completed all the required tests, your medical file will be presented at a multidisciplinary kidney candidate selection meeting. A group of surgeons, coordinators, nutritionists, and social workers make sure nothing has been missed in your file. After your case has been presented, you, and your referring nephrologist, will be notified in writing about the outcome. You and your doctor will get a letter that states clearly you are on the list, that you were determined not to be a candidate, or more tests are needed.
6. Connecting with more than one transplant center
A side-note: you can always get a second opinion. Transplant centers each have their own candidate selection criteria. They must provide this criteria if you ask for it; your dialysis center may have local centers' policies on file. There are some medical conditions which may be more-or-less automatic contraindications to transplant (active malignancy might be in this category) but other conditions may be more variable between transplant centers (weight, age, or HIV status may be in this category). If you don’t feel comfortable with the determination by one transplant center, talk with your nephrologist about connecting with a different one.
You may choose to get on the transplant waiting list in more than one "region," since most kidneys are distributed more-or-less locally. Different regions may not be as far away as you fear. For example, from where I work, a different region is only 1½ hours away. Of course, if you pursue getting listed in more than one region, you should make sure this is okay with your insurance and that you are prepared for the additional inconvenience of getting care farther from home.
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