As a patient services advocate who works with potential transplant recipients at a major hospital, I spend a lot of time correcting misperceptions and educating patients about what they need to do to get on the transplant list. As a kidney transplant recipient, I have a lot of “inside knowledge” that I readily share with anyone who will listen.
- It’s a treatment, not a cure. If you’re like I was, you believe that kidney transplantation is the brass ring for which everyone with end-stage renal disease (ESRD) should strive. Well, it is and it isn’t. For many, transplantation will give you freedom, make you feel better and present you with a new lease on life! But it’s not always smooth sailing. According to Stanford Medicine, about 25 percent of kidney transplant patients will experience one rejection episode in their first year. There are many adjustments to be made especially that first year—with medications, avoiding germs and frequent visits to your transplant center. You have to be committed. For some ESRD patients, transplant may be too risky, and not really offer any improvement in their quality of life.
- You can’t believe everything you hear. As I’ve spent time talking with dialysis patients, those with chronic kidney disease (CKD) and those who take care of us, I’ve found there are many false tales and rumors floating around out there—everything from taking hands-full of pills for the rest of your life to rich people getting put at the top of the list. My recommendation: Ask a professional! Transplant centers have factual information. They know how the waiting list works, and they have an idea about what medications you’ll be prescribed. Your cousin’s neighbor’s brother who knows someone who had a transplant may not be an accurate source of information. And beware—even the internet can have false information. Every case is individualized and what happened with someone else may not be what happens with you. Seek out FACTS! Use reliable sources like a transplant center’s website.
- Only family members can give me a kidney. FALSE! Though family members may have an increased chance of matching, don’t stop there. Living donation can have better outcomes for those needing a kidney transplant. Friends or even strangers may be a match. (That’s how deceased donation works, after all.) Don’t be afraid to let people know you need a kidney. If you don’t want to talk about it let someone you know speak to people on your behalf. Use social media. Write it on your car. Get the word out. There are wonderful, generous people in the world who may be willing to give you a kidney. You never know who may actually call you with interest.
- One call and I’m done. Some people have the misconception that all you have to do is ask to be put on the list to receive a kidney. If only it were that easy! There is a barrage of tests that potential recipients must go through to evaluate their fitness for the transplantation. Everything from multiple lab tests, talking with a social worker, x-rays, heart evaluation to seeing a dentist. And that’s just to name a few. Surgeons just can’t put a kidney into a person whose body, mind and life situation isn’t ready to handle it.
- Do your part. Kidneys are a very scarce resource. We all hope that options are on the horizon that will make dialysis a thing of the past. Until that time, if you’re wanting a transplant you have to do your part. Keep yourself as healthy as possible. Show up for every treatment and stay the full time. Eat healthy. Quit smoking. Exercise. Lose weight. These ideas may seem like no-brainers and yet they may also seem impossible. It’s up to us to make choices day by day and moment by moment, to give up what we want right now for that thing we want the very most.
Elaine Milem, a two-time kidney transplant recipient, is a patient services advocate at the University of Kentucky’s UK Transplant Center. She works with physician offices and dialysis centers providing education to patients so they can make informed decisions about the option of transplant. Read more about Elaine’s experience with kidney failure on the American Kidney Fund website.