Kidney Transplant Stories

Many other people have already been through the kidney transplant process. Reading their stories could help you make a decision in your own process.

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The Ride of Your Life By Kelly A. Hayes New Freedom, PA

Finding out that you or your loved one need a kidney transplant is similar to riding a roller coaster. However, when you know what to expect, surround yourself with a core group of supporters and work hard to communicate, the ride becomes less jerky and the curves more smooth.

In January 2005, my husband and I had our first meeting with the transplant team at The Johns Hopkins Hospital in Baltimore, MD. While he was soon “cleared” for a transplant – either from a living donor or a deceased kidney donor on the UNOS waiting list – throughout this time of preparation, we tried to keep three things in mind. I remember them according to the acronym “ACT.”  Be accountable, be a good communicator and be a team player. Let’s take a closer look at each one of these.

Be Accountable
Throughout the entire pre-transplant phase, my husband and I worked together to keep track of test dates, medications, dietary restrictions and appointments. In spite of having paid professionals helping us, we knew that, ultimately, it was our responsibility to make sure that things were happening according to plan. For example, our careful monitoring of diet and exercise regimes paid off physically by lessening the side effects of dialysis and improving recovery time after surgery. We found it was also important to call the hospital to verify the receipt of test results when diagnostic procedures were performed at other locations. Failure to have done so could have delayed progress by several months.

While we were unable to change our health situation, we were able to proactively and positively manage it.  For instance, we purchased a new printer with copy and fax capabilities so we could copy and send referrals and medical information to the necessary people. We also found it helpful to begin working with our insurance company early on in the game, which gave us ample time to successfully conquer unforeseen challenges. We also inquired about insurance coverage for post-transplant immuno-suppressant drugs, since most programs offering financial assistance require advance registration and investigation.

Be a Good Communicator
A second key element to experiencing a smooth pre-transplant journey is good communication, not only for sharing your emotional highs and lows, but also for sharing the news of your upcoming transplant.  When my husband needed a donor last winter, I wrote letters to area friends and churches asking for prayers and sharing our need for a donor. Make others aware. These friends, neighbors, family, coworkers, church and/or association members will become your necessary support group throughout the entire transplant experience.

By reaching out to others, you will also increase the likelihood of finding a donor, having prayers offered on your behalf (if that is important to you) and receiving cards and calls of encouragement, just when they are needed.

In addition to communicating with your personal support network, make an effort to communicate well with your nurse coordinator. He or she tracks incoming medical records and test results, coordinates records between all members of the transplant team, notifies the patient of necessary next-steps; in short, they are responsible for making everything about your future  transplant move forward. They will be your friend and advocate.

Be a Team Player
Preparing for a transplant also means realizing that you are now a team player for improved health. Your health care team consists of health care workers, personnel staff, insurance representatives and your own personal support network, to name a few. Success on this team requires learning to trust others’ skill, knowledge and their word.
Part of being on a team also means playing by the rules. And a willingness to cooperate with established transplant evaluation, insurance and hospital procedures, helps things go more smoothly.  Learn, to the best of your ability, what is expected of you, and do your best to accomplish it.

A final example of team play involves your personal support network. During the pre and post-transplant experiences, even the most self-sufficient of families will probably find they need help with something. I Last spring, for instance, shortly after my husband went into end-stage renal failure, we needed immediate help with lawn mowing. Then again, during the summer and fall when he had his kidneys removed, went on dialysis and later had a transplant, we needed help with childcare. Because of our extensive personal network and caring parents, we were never without the help we needed.

After several years of not being able to ride roller coasters because of his enlarged kidneys and bleeding cysts, my husband and children are looking forward to riding together again this summer.  I expect that all three of them will want to ride the roller coasters again and again because they understand that to fully experience the joy of the ride, they have to accept the ups with the downs. This ride to transplant, a ride to a better quality of life, is a ride filled with hope that you won’t want to miss.