Medically reviewed by Abdolreza Haririan, MD.
Being listed on the organ transplant waitlist is a milestone in your journey to a healthier life. While waiting, continue to prepare for an organ transplant. Maintaining regular contact with your transplant team and caring for yourself are important. This is also an opportunity to search for a living donor for a liver or a kidney. Here are the steps to take while on the transplant waiting list.
1. Complete All Required Testing
You completed many tests during your initial evaluation. These tests checked for illnesses, such as diabetes and heart disease, that could impact the transplant outcomes. Some, like mammograms and colonoscopies, are to rule out cancer. Chronic disease and cancer cause complications after a transplant. It’s better to undergo treatment for these diseases and cancers before transplant.
You may need to repeat some tests. Your transplant team will tell you how often you need to complete each one. The primary provider can order tests that you can complete outside the transplant center. Send your results to the University of Maryland Medical Center (UMMC) transplant team.
2. Make Sure Your Health Insurance Is Active
Health insurance usually expires or renews at the start of each year. Make sure that your health insurance is active. It covers testing, surgery, medications and follow-up care. Let your transplant team know if you get new insurance cards at the start of the year. Tell them right away if you lose your health insurance. They can talk to you about alternative coverage options.
3. Find a Living Donor
There are a high number of individuals waiting for an organ transplant. About 90,000 people are on the waitlist for a kidney transplant, and about 9,000 people are on the waitlist for a liver transplant. The number of available deceased donor organs is much lower, so people usually have to wait for years to receive an organ transplant. However, if you have a living donor who is approved for a liver or kidney transplant at UMMC, you can proceed with surgery. Living donors do NOT have to be family members. Start your search with people you know, and expand your search from there:
- Share Your Story: Contact people you know via text, email, letters, and social media. Tell people how your transplant will change your life. Many times, people do not even know that you need a liver or kidney transplant.
- Engage “Champions”: It might feel awkward to tell others that you need an organ transplant. If this is the case, engage your living donor “Champion.” A Champion is someone who can help you find a living kidney or liver donor. They’re your spokesperson and get the word out that you need a living donor.
- Broadcast on the Local News: Contact your local news station to reach a broader audience. Share your story. Provide information on how to contact the UMMC Living Donor Program to donate. Include the phone number and website.
- Create a Bumper Sticker or Car Decal: You can advertise on your car’s rear window and bumper. They’re great spots to catch the attention of drivers stuck in traffic behind you. You can create a title like “John Doe needs a kidney”. Include a QR code or the website of the UMMC Living Donor Program.
Some people have questions about financial help for living donors. The National Living Donor Assistance Center (NLDAC) program is a valuable resource. It can cover transportation, lodging, and other living donor expenses. Contact your transplant social worker and team for more details on the NLDAC program.
4. Tell Your Transplant Team About Any Changes
Let your transplant team know immediately if you get a new medical diagnosis. A new condition, such as heart disease, diabetes or cancer, can change your transplant eligibility or outcome. Your transplant team will inform you of the next steps to take. After treatment, your team may ask your specialist for a “clearance for transplant.” Some new diagnoses might not require additional follow-up.
If you get admitted to the hospital, tell your transplant team. After you leave the hospital, your transplant doctors will check your hospital records, and your team will let you know if you need any follow-up.
5. Stay Healthy
One of the best things to do is to stay healthy while waiting for an organ transplant. While you wait, reflect on your emotional readiness for a transplant. Receiving a transplant changes your life. Prioritize your physical, mental, and emotional health while waiting.
- Physical Health: Do all you can to prevent further organ damage. Follow kidney dietary guidelines by limiting your sodium and phosphorus intake. Follow liver dietary guidelines, including avoidance of alcohol. Set up an exercise routine. Regular exercise has many benefits. It helps reduce anxiety and depression. Talk to your doctor about a diet and exercise that are safe for you.
- Mental Health: Stay informed and get prepared. While waiting for a new organ, learn what to expect during and after surgery. Create a transplant patient checklist of things to bring to the hospital, including your ID, clothes, shoes and medications. Consider what you plan to do after the transplant. Thinking about the future can keep you positive while you wait.
- Emotional Health: Reflect on your emotional readiness for transplant. Preparing for an organ transplant might seem daunting. Talk to the people who will be supporting you after the transplant. Talk to a therapist about how to cope with concerns and anxiety, if needed. If you don’t have a therapist yet, talk to your doctor or transplant social worker. They can help you find one.
Focus on the Future
As you prepare for an organ transplant, having a hopeful mindset is key. Stay in contact with your transplant team. This relationship ensures they have the latest information. Look after your physical, mental and emotional wellness. Keep your living donor campaign going. Work with your living donor “Champion.” Join a UMMC living donor webinar or webcast to learn more:
- Finding a Kidney Donor
- Finding a Liver Living Donor
- Living Donor Kidney Transplant Webinars and Webcasts
- Living Donor Liver Transplant Webinars and Webcasts