If you have polycystic kidney disease (PKD) and have progressed to end-stage kidney disease (ESRD), you may need a kidney transplant.
Here’s what to expect and how to navigate the process.
There are two ways to get a new kidney. You can receive a donation from a deceased donor or a living donor.
If you are a deceased donor, you will be placed on a waiting list to receive a kidney from a deceased person. With a living donor, you are arranging for the use of a kidney from someone who is alive.
If you are waiting for a deceased donor, it may be a few years before you have a kidney available. There is a waiting period of 3 to 5 years.
Your waiting time may be longer depending on your age and health. If you have a sensitized immune system from previous transplants, blood transfusions, or pregnancy, it may be more difficult to find a compatible donor, so you may have to wait longer.
“My number one tip for those who need a transplant is to look for a living donor,” says Niraj Desai, MD, surgical director of kidney and pancreas transplantation at Johns Hopkins Medicine. “It’s very difficult to ask anyone to do this, but there are programs that we need to run to encourage living donation.”
Johns Hopkins Medicine has a program called Live Donor Champion that helps match donors and recipients. You can also try the National Kidney Registry, which uses a large database to match living kidney donors to recipients.
With a living donor, the process can be quick. “Living donor transplants can often occur within weeks to months of beginning transplant evaluation,” said Linda Wright, DrNP, transplant expert for the American Nephrology Nurses Association.
“The list is long, but these are some of the broader categories of things we’re looking for,” says Desai.
Kidneys are assigned through a points system operated by an organization called the United Network for Organ Sharing (UNOS). Using this computer system, UNOS takes each deceased donor kidney and matches it against a point system for potential recipients.
“These points are based on certain medical factors, such as how long they’ve been on the waiting list or when they started dialysis, how well they’re a match with the donor, and how close they’re geographically to the donor’s location,” says Wright.
Children enjoy special priority. You may receive preferential treatment if you have a sensitized immune system or have been an organ donor in the past.
“The most important thing is to keep your health needs in mind and maintain an active lifestyle,” says Desai. Try to eat healthy and exercise regularly.
Before a transplant you will be medically examined and tested. While waiting for a kidney, you can repeat it to stay up to date. Make sure you keep up with that, says Wright.
Stay in close contact with your transplant coordinator so they know what’s going on with your evaluation and what your waitlist status is.
“Keep your transplant center informed of any changes in your health, insurance, or social situation,” says Wright. Don’t forget to let them know of any change of phone number or address so they can reach you quickly when an organ becomes available.
When you’re ready for your transplant, you’ll stay in the hospital for a few days.
You will be given general anesthesia before the operation. Your doctor may also prescribe other pain blockers.
During the surgery, your surgeon will make an incision in your lower abdomen. There they will insert the new kidney and then connect it to your blood vessels and bladder.
Your new kidney will start working immediately. It may take a few days to fully work. You may need to be on dialysis for a few weeks for it to reach its full working capacity.
“Recovery in the hospital takes less than a week,” says Desai. You may be able to leave the hospital 3-5 days after your surgery. “It will take a few more weeks at home before things get back to normal.”
Initially, you may not be able to drive or lift anything heavier than 5-10 pounds. You may be able to return to work around 2-3 months after your transplant.
After the operation, you will see your doctor regularly. “You can expect frequent lab tests and appointments at the transplant center in the first few months after the transplant,” says Wright.
Your doctor will also give you immunosuppressive medications to keep your body from rejecting your new kidney. You will take this drug for the rest of your life.
If you’re considering a kidney transplant, share your questions and concerns with your doctor. If you don’t understand something, ask them to explain it better.
Ask questions like: