If you have polycystic kidney disease (PKD) and end-stage kidney disease (ESRD), you may need a kidney transplant.
Here’s what you can expect and how to navigate the process.
How do I get a new kidney?
There are two ways to get a new kidney. You can get a donation from a deceased donor or a living donor.
With a deceased donor, you get on a waiting list to receive a kidney from someone who has died. With a living donor, you can arrange to use a kidney from a living person.
How much time would it take?
If you wait for a deceased donor, it may take a few years before you have a kidney available. It is a waiting period of 3 to 5 years.
Your wait may be longer, depending on your age and medical condition. If you have a sensitive immune system from previous transplants, blood transfusions, or pregnancies, it can be difficult to find a compatible donor, so you may have to wait longer.
“My biggest advice to those who need a transplant is to look for a living donor,” says Neeraj Desai, MD, surgical director of kidney and pancreas transplantation at Johns Hopkins Medicine. “This is a very difficult thing to ask someone to do, but there are programs we have in place to encourage living donation.”
Johns Hopkins Medicine has a program called Live Donor Champion, which helps donors and recipients. You can also try the National Kidney Registry, which uses a large database to match living kidney donors with recipients.
With a living donor, the process may happen quickly. “Living-donor transplants can often take place within weeks to months of starting a transplant evaluation,” says Linda Wright, DrNP, a transplant expert for the American Kidney Disease Nurses Association.
What are the criteria for obtaining a new kidney?
“The list is long, but these are some of the larger categories of things we sift through,” says Desai.
- No significant heart disease
- There is no current diagnosis of cancer
- If you have had cancer in the past, there is sufficient evidence that it has not recurred
- Adequate social support
- A body mass index of 35-40 or less
- There is no major progressive neurological disease
- There is no major untreated mental illness
How are the kidneys distributed?
Kidneys are allocated through a points system run by an organization called the United Network for Organ Sharing (UNOS). Using this computer system, UNOS takes each deceased donor’s kidney and matches it with potential recipients using a points system.
“These scores are based on certain medical factors, how long they were on the waiting list or when they started dialysis, how closely they matched the donor, and how close they were to the donor’s location,” Wright says. .
Children get special priority. You may get priority if you have a sensitive immune system or if you were an organ donor in the past.
How can I prepare for my transplant?
“The most important thing is to stay on top of your health needs and maintain an active lifestyle,” says Desai. Try to eat a healthy diet and exercise regularly.
Before your transplant, you’ll undergo medical evaluations and tests. While you’re waiting for college, you can repeat it to stay updated. Make sure you keep up with it, says Wright.
Stay in close contact with your transplant coordinator so that you know what is going on with your evaluation and what the status of your waiting list is.
“Keep the transplant center informed of any changes in your medical condition, insurance, or marital status,” says Wright. Don’t forget to share the phone number or change the address so they can reach you quickly if a member becomes available.
What happens during implantation?
When you are ready for the transplant, you will remain in the hospital for a few days.
Before the surgery, you will be under general anesthesia. Your doctor may also give you other pain blockers.
During the surgery, the surgeon will make a cut in your lower abdomen. This is where they will place the new kidney, and then connect it to the blood vessels and the bladder.
Your new kidney will start working right away. It may take a few days to fully work. She may need dialysis for a few weeks to help her reach her full working state.
What does the recovery process look like?
“Recovery in the hospital takes less than a week,” says Desai. You may be able to leave the hospital 3-5 days after surgery. “It takes several more weeks at home to get back to normal.”
At first, you may not be able to drive or lift anything heavier than 5-10 pounds. About 2-3 months after transplantation, you may be able to return to work.
You will see your doctor regularly after surgery. “You can expect to have frequent lab tests and appointments at the transplant center in the first few months after transplant,” says Wright.
Your doctor will also give you immunosuppressive medications to prevent your body from rejecting your new kidney. You will take this medicine for the rest of your life.
What should I ask my doctor?
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 better.
Ask questions like:
- How do I keep my kidneys working for as long as possible while I wait for a transplant?
- How can I make the most of my opportunity to have a transplant?
- How can I remain a good candidate while I wait for college?
- What type of medication will I need?
- How can I avoid infection after transplantation?