Kidney Donors and Recipients

The Rhodes Family

On June 22, 2002, the six Rhodes children and their families will start a bike ride that begins in Jacksonville and takes them to Orlando on June 25 or 26 for the beginning of the Transplant Games. This will be the family's first bike trip spreading the word on organ donation and PKD (polycystic kidney disease).

Their story, as told by Jeanne Rhodes Prince, begins with their parents Joe and Mary Catherine Rhodes.

Mary Catherine Rhodes, our mother, had AD-PKD. It caused cysts to form in both her kidneys and liver. She was not diagnosed until age 50, when she learned that each of her six children had a 50% chance of having the disease. Mary, Jeanne and JT were diagnosed shortly after mother learned she had the disease. Cathy was too young for diagnosis at that time. It was not until Louise was tested as a possible donor for Jeanne that she learned for certain that she did not have the disease.  Cathy was confirmed positive when she experienced symptoms in adulthood. Although Patsy and Louise do not have PKD, the disease has had a significant impact on their lives.

I knew I wanted a transplant instead of a life on dialysis and I gathered as much information as I could on the topic so that I was pretty well prepared. Since I was the first of my siblings to need a transplant, I was able to share what I knew with them. My sister Louise Rhodes Wright offered her kidney as soon as she knew I was going to be placed on the transplant list. At first I was not very confident that we would be a good match. As luck would have it, it turned out that we were a six antigen match. I accepted her kidney even though I knew that my brother or sisters may have a need for it too. The match was just too good to pass up!

In September of 1991 I received a kidney from my sister. My brother JT had 12 months of hemodialysis and spent a total of six months on the wait list. He received his kidney transplant in September of 1992, one year to the day after I received my new kidney. In July of 1994 he also received a bone tissue transplant.

My sister, Mary Frances Rhodes, spent three months on the wait list on hemodialysis and had her kidney transplant in February of 1999. My other sister, Cathy Rhodes Kasriel's liver had become so large that it was causing problems and had to be removed. She was placed on the wait list in October 1998. In March 1999 her status was up-graded from 3 to 2b. She received her liver in January of 2000.

My sister, Patsy Rhodes Robinson who lives in Jacksonville where my mom lived, always provided the primary care and support mom needed while she was on dialysis. She has been extremely supportive of each of us during our transplantation.

I am the luckiest of all of my siblings in that I can thank my donor anytime I want! Everyone else has written thank-you letters to their donor families but I can thank Louise in person! I feel that her gift is a debt that I can never truly repay but one that I will appreciate forever. Louise, in appreciation and gratitude for my ability to return to an active life, made a career change. She is now a renal social worker and provides transplant education and encouragement to dialysis patients at two dialysis centers in Baltimore,

We feel that we are a truly blessed family. We have each other and we live full and active lives. We are all doing very well! All of us are active, involved people. We all believe that exercise plays a vital role in stress reduction. We all compete in the Transplant Games both nationally and internationally. We feel our transplants have given us our lives back and we all work to give back to our communities in various ways. We think that the best way to thank our donors is to live our new lives in a healthy, giving way.

Our lives have been forever changed by the generosity of others. We appreciate and savor each and every day. We all work to promote awareness of the need for organ donation. We are very aware of the promise life offers; of the potential in each of us and we all have an intense appreciation of the gifts given to us.

Our parents received strong support from their faith, which promoted a deep love and respect for all God's creation. Our talents, faith perspectives, and political affiliations vary widely, but we were taught early on to respect differences. Although the wider society in which we were raised exhibited strong racial, religious and class bigotry, the education we received from our parents stressed respect and intrinsic value of all people. Perhaps this helped us cope with kidney disease, as it is found in people of all races, religions and economic backgrounds.

On June 22, 2002, we will start the bike ride in Jacksonville (from our childhood parish church, St. Paul's) and arrive in Orlando on June 25 or 26th for the beginning of the National Kidney Foundation Transplant Games. We will stop whenever and wherever to spread the word about organ donation and PKD. We have never done this before but we have all worked in various ways to promote organ donation. Members of our family often speak about organ donation, man booths at events, have been on the boards of the New Hampshire National Kidney Foundation (NKF), have been president and founder of the chapter of the Florida Transplant Recipients International Organization, Inc. (TRIO), served on the national board of TRIO, have been in many newspaper articles and articles in both Prevention and Woman's Day magazines. We all also support the PKD foundation, the NKF, TRIO, the Lung Association and other charitable events.

All of my siblings will be riding, as well as some of our spouses and children. There may also be other transplant recipients who join us along the way.

Finally, some advice that my family and I have for people waiting for a transplant are:

• Have faith; maintain a positive attitude!
• Express your gratitude to those who provide you with support, and harbor no ill will toward those who may be unable to live up to your expectations.
• Live as productive a life as you can- be happy for what you can do and do what you can.
• Join a support group or form your own. Talk with as many folks as you can about transplantation
• Be proactive about your health issues -- it's YOUR body and YOU are the leader of your health care team!