Lumps and bumps: One family’s remarkable transplant journey
By Stephanie Bost
My family’s transplant journey began 15 years ago with my grandmother Jean, who was just days away from beginning dialysis to combat the devastating renal failure caused by PKD.
In 1997, she received a phone call that would change her life. Transplant doctors discovered that a perfectly matched kidney had been found and Jean received her gift of life that same day. For our family, which includes her husband, Harry, three children, two daughters-inlaw and four grandchildren, that day brought a huge sigh of relief, but our family’s transplant journey was just beginning.
In 2010, Jean’s oldest son, Jeff, began to experience symptoms of renal failure and started the long process of getting on the kidney transplant list himself. Jeff and his siblings had known for many years that all three of them had the same disease as their mother. Jeff’s wife, Kathy, was tested to be a living donor for Jeff and amazingly was a close match. The transplant took place in 2011.
However, recovery did not bring as big a sigh of relief this time. As Jeff and Kathy were in the hospital, Jeff’s younger brother, Bob, was also going through his testing to be put on the kidney transplant list. Just nine months after Jeff’s transplant, Bob received a kidney from his wife, Courtney, in 2012. The same surgeons performed the transplant on both husband and wife pairs. Jean, Jeff and Bob continue to have regular blood tests to check that their new kidneys are functioning properly and they are all on extensive anti -rejection medication regimens. Our two living donors, Kathy and Courtney, are both doing very well post-operatively and we continue to be grateful for them, as well as the donor who gave this gift of life to Jean.
Our family is truly blessed to have had three successful kidney transplants, but as we look towards the future, there are more hurdles ahead. Jean’s youngest daughter, Cheryl, also has PKD and is currently experiencing the symptoms of kidney failure. She has completed the last of her testing and was recently put on the transplant list. Unlike Jeff and Bob, Cheryl does not have a living donor at this point. She has a hard to match blood type, O-negative, which has prevented many of her close friends and willing donors from meeting matching requirements.
As we continue to hope and pray for the health of this generation, the next generation is trying to be proactive about treatment options. Three of Jean’s four grandchildren have been diagnosed with the disease. Getting in on the early clinical trials of potential medications and seeing doctors early on about general health habits will hopefully give the next generation a better outlook. We have learned so much from each of our experiences dealing with this disease, but probably the most resonant is the need of a loving and caring support system. We have benefited from each other’s experience, either as a donor, a recipient or a child of parents with kidney failure.