When managing a chronic disease, like PKD, it is important to be your own best advocate. When preparing for a kidney transplant, being your own best advocate is critical to ensure your best outcome. Having been through the transplant evaluation process, here are the top five tips from our Director of Community Engagement, Nicole Harr, to help you navigate the process and utilize your advocate skills!
It’s all about timing.
As PKD progresses, be aware of your labs. Ask your nephrologist for a copy of your labs each time you visit and discuss your lab results with your health care team. When your GFR nears 20, you can begin to consider being evaluated for a transplant. Start the conversation with your nephrologist, family and friends early so you are prepared.
Build your support team.
As you begin to prepare for a transplant, having a support team will help you navigate the process from pre-transplant evaluation all the way through recovery after your surgery. Your support team can be family, friends, a neighbor or a colleague who can help get you to appointments, will help you get your questions answered and will also take notes to help you remember all of the information shared with you during your appointments. Don’t be afraid to ask for help.
Be prepared for your evaluation.
Once you and your doctor agree that it is time to be evaluated for a transplant and you have been referred to the transplant center, the evaluation process begins. During the evaluation, you will be introduced to your transplant team and you will undergo a series of tests to assess your options. Stay up-to-date on all annual tests and regular doctor visits as you manage your PKD. This will ensure that you are prepared when it is time to be evaluated for transplant.
During the evaluation, your transplant team will request records from all of your physicians and they will evaluate you for potential issues like heart disease, obesity and diabetes. Have questions ready for your team and make sure that you have their contact information so that if you have questions or need clarification after the evaluation, you know who to reach out to for answers.
The waiting begins.
As soon as your transplant team determines that you are a good candidate for a transplant, you will be added to the national kidney wait list and begin the wait for a deceased donor kidney. Donor organs are matched to waiting recipients by a national registry called the Organ Procurement and Transplantation Network (OPTN). This registry is operated by the United Network for Organ Sharing (UNOS). While on the national wait list, you will be required to have monthly blood draws.
As soon as you are listed, the transplant center will begin evaluating potential living donors. Living donors will need to contact the transplant center directly to learn more about living donation and to begin the evaluation process. During this waiting period, it is important to stay in close contact with your transplant team and notify them of any changes in your health.
The wait for a transplant could be months or it could be years depending on where you live and if you have potential living donors being tested. It is important to stay positive and stick to a healthy lifestyle:
- Follow your doctor’s recommendations for diet and exercise.
- Make sure to maintain a healthy weight.
- Take all of your medications as prescribed and keep all of your appointments.
Discuss any concerns or questions you have about the transplant with your transplant team. Preparing for and waiting for a transplant can be an emotional time. Your transplant team is there to help and provide support.
To learn more about the kidney transplant process, visit our website.