With more than 100,000 people waiting for a kidney in the United States, it is important to educate yourself and your family about transplantation as early as possible so that you are prepared. There are many questions when it comes to transplantation. When is the right time – before dialysis or after? What is the process? Do I get listed at one center or several?
When your GFR nears 20, you can start considering a transplant. Making the decision to be evaluated for a kidney transplant should be considered carefully with your doctor and/or nephrologist and your immediate family. Because of the way kidneys are allocated (read more on this below) combined with the progressive nature of PKD, it is important to consider being listed early – before dialysis begins. Although you cannot be officially listed until your GFR is at 20 or below, it is important to gather information early. You may have to start the conversation with your physician; don’t wait for them to bring it up!
Transplant process steps
Once you have decided to be evaluated for the transplant list, there are many steps to take.
- You are evaluated for a transplant by the medical team at your transplant center.
- If accepted as a transplant candidate, you are registered on the national organ transplant waiting list. A living donor may also be identified and evaluated for living donation. This is also the time to decide if you want to register at more than one transplant center.
- Organize your support system.
- Develop your financial strategy.
- The waiting period begins.
- Your transplant takes place.
- Your medical team manages your post-transplant care.
Making the decision to be evaluated for a kidney transplant should be discussed with your doctor and/or nephrologist and your closest family and friends.
Transplantation in children differs from adult transplantation. Not only are children smaller than adults, but they also have special emotional and medical needs. So that children can reach their full potential, their care must be focused on the fact that they are constantly growing and developing. That is why it is important that professionals who are trained in pediatric care perform pediatric transplantation.
Like with adults, children in need of a kidney have two main options: a living donor kidney transplant and a deceased donor kidney transplant. A pediatric nephrologist and a transplant surgeon will discuss both types of kidney transplants with the family to help determine which approach is more suitable for their situation.
Finding the right doctor is important to your child’s care. A pediatric nephrologist should be able help you monitor your child’s kidney health and be able to connect you with a pediatric transplant surgeon when a transplant is necessary. If you do not already have a pediatric nephrologist, the American Society of Pediatric Nephrology has indicated families who need assistance in locating a doctor familiar with kidney issues in children can send an email to firstname.lastname@example.org. When contacted by families, the organization will provide a listing of all pediatric nephrologists in the family’s home state.
Medical professionals involved in a pediatric kidney transplant typically include:
- Pediatric nephrologist
- Pediatric transplant surgeon
- Social workers
- Child psychiatrists
If possible, get to know the members of the team before the transplant so you are more comfortable with the role they play before, during or after the procedure.
Be prepared for changes in life following the transplant. Life will be different for a child, and their family, after a transplant. There are new medicines to take, new routines to follow and doctors visits to make. However, with a little pre-planning with the healthcare or transplant team, you can put together a plan of action that works well and keeps your child healthy.