I would like to share my younger sister Lori’s story, which highlights the importance of preemptive kidney transplantation, in the hope that this will help others on the same path. A preemptive transplant is performed on a person living with chronic kidney disease (CKD) before kidney function deteriorates to the point of requiring dialysis. Thanks to her donor, Paul, my sister was able to undergo a successful kidney transplant and never had to undergo dialysis.
When I was 7 years old, our father passed away from a cerebral hemorrhage at the young age of 28. At that time, we barely knew the cause of his death. As an adult, I obtained a copy of our father’s autopsy report and discovered that he had Polycystic Kidney Disease (PKD). We still didn’t know the implications of his diagnosis. It wasn’t until much later that our sister Bonnie discovered that his kidney disease was hereditary, and we discovered that all my siblings developed PKD except for me. Additionally, at the age of 14, my daughter Jenna was diagnosed with Chronic Kidney Disease (CKD) due to a bladder defect that was unrelated to PKD. This has made gathering knowledge about kidney disease, dialysis and transplantation a meaningful part of my life and was instrumental in helping me advocate for my family members.
Usually, when people are referred for kidney transplant evaluations, they are already undergoing dialysis. This happens because their kidney function has declined to a level where their kidneys can’t properly filter toxins from the blood. Without dialysis, they would become seriously ill or die. Planning for a transplant ahead of time is not very common.
In my sister Lori’s case, we knew her kidney function was declining. She was getting blood tests regularly and started to experience significant fatigue, appetite problems, and it became inevitable that she would need either a transplant or dialysis soon. In my search for knowledge, I found that most people who undergo a successful kidney transplant have better outcomes compared to people on dialysis. While both treatments have their advantages and disadvantages, studies indicate that patients with successful kidney transplants tend to live longer lives.
Although dialysis is a life-saving procedure and can be beneficial when needed, it can also come with complications and side effects. According to NKF, the estimated life expectancy for people on dialysis ranges from 5 to 10 years. Nevertheless, there are exceptional cases where people have successfully maintained a healthy life on dialysis for up to 20 or even 30 plus years. My daughter and older sister Bonnie did well on peritoneal dialysis, but other members of our kidney forum shared that they had suffered complications associated with dialysis, which included uncontrolled blood pressure, muscle cramps, itching, sleep problems, anemia. Some struggled with inadequate nutrition, depression and fluid overload.
I had read that preemptive transplantation offered a higher chance of success. By receiving a transplant before dialysis is required, people can potentially avoid the complications and side effects associated with prolonged kidney failure. Since Lori’s kidney failure was slowly progressing, we hoped she might be able to do get a transplant and completely avoid dialysis. Lori’s partner, Paul, decided to explore this option while Lori was undergoing her transplant evaluation.
In order to be placed on the national organ waiting list, it is essential for everyone, whether they are hoping to receive a transplant from a living or deceased donor, to complete the evaluation process and be approved. Generally, patients become eligible to be listed for the waiting list, and for the option of a preemptive transplantation once their kidney disease has progressed to a Glomerular Filtration Rate (GFR) of 20 or lower. It is crucial to discuss with a nephrologist ways to slow down the decline in kidney function through dietary changes or medications. Planning ahead and getting evaluated as GFR declines are key.
You can be referred for a transplant evaluation by your nephrologist or dialysis center, or you can choose to self-refer. Contact any transplant center near you to initiate the process or choose a center from your insurance company’s list of preferred providers. It is important to be proactive, learn as much as you can, and involve your family in your appointments. Having a support person can be helpful in taking notes or helping in listening to all the information that will be given to you.
To be approved for the waiting list for a kidney transplant, Lori had to undergo physical tests, scans and labs, vaccinations, psychological screening, financial assessments, and patient education. It is important to inquire about the specific criteria for transplantation at each center, as requirements can vary. These criteria can include factors such as age, BMI, high antibodies, and other considerations. Not all centers are the same, so conducting thorough research is essential. The evaluation process can take 2 to 6 months or even longer. Effective communication is key to know exactly what you need to do to be cleared.
Paul decided to undergo testing as a potential donor for Lori, aiming for a preemptive transplant. If he was not a match for her, he was open to participating in a paired exchange program. He contacted the transplant hospital and underwent a thorough evaluation, which included medical tests to ensure he was in good health and compatible with Lori. These tests looked at factors like blood type, tissue matching, and overall health to minimize risks for both the Paul and Lori. Paul also underwent counseling to understand the procedure, risks, and long-term implications. His donor evaluation was covered by my sister Lori’s insurance. All this took time and commitment as it took place during the covid pandemic, when some hospitals temporarily halted their transplant programs. Lori and Paul were racing against time! Fortunately, Paul received notification of approval as a kidney donor, and he turned out to be a perfect match for my sister!
Despite the well-documented positive health outcomes associated with preemptive kidney transplantation, there seems to be a lack of emphasis on this option during patient education. The transplant coordinator is there to advocate for the patient, so don’t hesitate to ask questions throughout the process. If your coordinator lacks knowledge or helpfulness, it is acceptable to request a different coordinator. The same goes for the living donor coordinator, their role is to advocate for the donor.
Early diagnosis of CKD is crucial. Preemptive transplants can be performed using kidneys from living or deceased donors. Hopefully more transplant centers will aim to evaluate and approve patients early. In the United States, only about 20% of kidney transplants are performed preemptively, even though it is considered the preferred treatment for end-stage kidney disease.
Paul and Lori had already witnessed the benefits of successful kidney transplantation when my daughter Jenna received a kidney from a kind stranger (altruistic donor) when she 21 years old.
Taking a proactive approach to find a living donor can expedite the process to get a kidney sooner. More and more people who want a kidney transplant are participating in paired exchange programs such as the National Kidney Registry, proactively seeking preemptive transplants by bringing willing, non-matching donors into the process and avoiding dialysis.
If you are approved for a preemptive kidney transplant and your living-donor is also approved, the transplant procedure will be scheduled. Lori’s transplant hospital performed the living donor evaluation concurrently with her evaluation process. If your living donor is not approved, you will be placed on the waiting list for a deceased-donor kidney transplant. Maintaining good health and following a renal diet can help delay the need for dialysis. A good question to ask the transplant center is how many living donors they work up at one time.
Paul was able to successfully donate his kidney to Lori, despite the challenges posed by the pandemic. They both had speedy recoveries and are doing wonderfully! They will soon celebrate their 4-year kidneyversary. My daughter Jenna just celebrated her 7th transplant anniversary. Learning all I can has allowed me to help them advocate for the best care.
Preemptive kidney transplant is a life-saving procedure with cost-saving benefits, yet it’s often overlooked in the United States. Raising awareness among patients, families, and healthcare providers is essential to boost successful transplants and enhance the quality of life for those with end-stage kidney disease.
Karol Franks is married and has four children. She is a passionate advocate for individuals with kidney disease and living donors. Her daughter Jenna and sister Bonnie, both underwent peritoneal dialysis for several years and were fortunate to receive kidney transplants through the National Kidney Registry paired donation voucher program. Karol’s sister Lori received a preemptive kidney from her husband.
Karol Franks actively participates as an administrator for Living Donors Online, a community dedicated to supporting living organ donors and potential donors. Additionally, she serves as an administrator for the “I Hate Dialysis” Facebook group, which offers assistance and encouragement to individuals with kidney disease and their families. Karol has volunteered at RSN’s Renal Teen Prom and other outreach events for numerous years. She resides in Southern California.
Web ID 8097
