What You Need to Know if Your Child Needs a Kidney Transplant
As the mother of a child with chronic kidney disease who has now been transplanted, there is a lot of information that I wish I would have known. Some things took me months of research to find or figure out—I learned so much I could write a book!
Here are some valuable tips and advice from the perspective of a mother whose child needed a kidney transplant:
Ask when you can be referred for transplant: Different centers have different rules and guidelines as far as weight, height, vaccines, and other important factors that must checked before your child can be referred for transplant.
Learn about the process: Familiarize yourself with the entire transplant process, from evaluation to surgery and recovery. Knowledge is empowering and allows you to ask the important questions and know what to expect.
Know that you have a choice of transplant center selection and can seek multiple medical opinions: Choose a reputable transplant center with experienced surgeons and a successful track record in pediatric kidney transplants. You want to feel comfortable and confident in who is caring for your child. Don’t hesitate to get second or even third opinions from different transplant centers to ensure you make the best decision for your child’s health. Every center is different and does things differently. Here are some questions you might want to ask each center:
- How many children has the center transplanted that are around the size and weight of your child?
- What surgical technique do they use? Would that technique affect peritoneal dialysis in the future if your child needed dialysis again?
- When was their transplant protocol last updated?
- Do they use a steroid-free program?
- What are the risks and benefits?
A great place to start is www.kidneytransplantcenters.org, which provides data from all U.S. transplant centers and lets you filter by your area and see pediatric transplant outcomes for all centers.
Evaluation process: You can go through evaluation at one or multiple centers (check your insurance to make sure this is covered). Labs and imaging will be run, specialists will be consulted, and immunizations will be updated. You will meet the surgeon and the transplant team, which can include a social worker, nephrologist, dietician, nurses, and more. After completing the evaluation, your child’s case will be presented to a board to see if he or she is approved for transplant at that facility. Ask your facility if they work up potential living donor matches prior to listing. Some centers do start this process, particularly if a parent wants to be the donor.
The wait: Once your child has been approved for transplant, they are listed in UNOS, which administers the U.S. transplant system under contract with the federal government. Then the wait for a deceased kidney begins. Pediatric patients are given priority in kidney allocation. The wait for a kidney could be short or long depending on a multitude of factors including location and blood type. You may list at multiple centers if you wish or if your team thinks it may help your child get a kidney sooner.
Living donor option: Explore the possibility of a living kidney donor within your family or network. It can lead to faster transplantation and better outcomes. Share your child’s story on social media; at church and coffee shops; on the radio, TV, and billboards; and make flyers to find someone willing to help. Make sure you know about the living donor process so you can answer basic questions people will have. Even if someone is not a blood-type match, they can donate through the Nation Kidney Registry’s Voucher Program or paired exchange program. For more information, visit www.findakidney.org or www.kidneyregistry.org/for-patients.
Financial considerations: Educate yourself about the financial aspects of kidney transplantation, including insurance coverage and potential costs. Financial counselors at your transplant center can help you navigate this. There are resources for living donors too. Some families choose to start a COTA or GoFundMe account to help. Commercial insurance usually provides a stipend for costs associated with the transplant process. If your child has end-stage renal disease, they qualify for Medicare. Make sure to ask your center for help navigating this aspect of the process. Another great resource available is the Ronald McDonald House, which can provide accommodations if you need to be close to the hospital post-transplant for frequent monitoring.
Support networks: Build a strong support network of family and friends who can assist during the journey, both emotionally and practically. Sometimes it helps to have resources where you can connect with other parents and patients who have been through similar experiences. There are several Facebook groups for parents of children with kidney disease.
Diet and lifestyle: Learn about post-transplant dietary restrictions and lifestyle changes that will be necessary for your child’s well-being. Your transplant center will usually have a dietician and nurse review important information with you. Make sure you are clear on these instructions as well as under what circumstances you should take your child to the ER.
Medication management: Understand the importance of strict medication adherence after the transplant. These medications are crucial to prevent rejection. Make sure you have a clear plan of who will be administering the medications to your child. Also, set calendar reminders so you don’t forget refills.
Emotional well-being: Having a child with a chronic disease can be difficult. Take care of your own mental and emotional health. It can be a challenging journey, and seeking support or therapy for yourself may be beneficial.
Advocacy: Be an advocate for your child. Never be afraid to ask questions and voice concerns. You are their voice!
The transplant itself can be tough: If you have a child on dialysis, you inevitably look forward to transplant day. But the surgery and recovery can pose their own challenges, and you should be mentally prepared for that possibility. Healing takes time, and it can be weeks before your child is back to normal.
Long-term care: Recognize that the journey doesn’t end with the transplant. There will be ongoing medical appointments and follow-up care.
Hope and positivity: Maintain a hopeful and positive outlook. Kidney transplants can be life-saving and life-changing, and your attitude can make a big difference. Each transplant journey is unique, and it’s OK to ask questions and seek guidance from your medical team and fellow parents who have gone through similar experiences. Your love and support are invaluable to your child during this challenging time.