Written By Kelly A. Hayes
PKD Caregiver, New Freedom, PA

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

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.

Be Accountable

Throughout the pre-transplant phase, my husband and I worked to keep track of test dates, medications, dietary restrictions and appointments. Yet despite having paid professionals helping us, it was ultimately our responsibility to make sure things happened. Careful monitoring of diet and exercise regimes paid off physically by lessening the side effects of dialysis and improving recovery time after surgery. When diagnostic procedures were performed at other locations, calling the hospital to verify receipt of test results helped prevent delays.

While we were unable to change our health situation, we were able to proactively manage it. Purchasing a new printer with copy and fax capabilities allowed us to more effectively manage medical information. Working with the insurance company early in the pre-transplant phase gave us time to successfully conquer unforeseen challenges and inquire about coverage for post-transplant immuno-suppressant drugs many of which require advance registration.

Be a Good Communicator

A second key element to experiencing a smooth pre-transplant journey is good communication. 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 personal encouragement.

Make an effort to communicate well with your nurse coordinator. He or she tracks incoming medical records and test results, coordinates records between members of the transplant team and notifies the patient of necessary next-steps. They will be your friend and advocate.

Be a Team Player

Preparing for a transplant means you’ve become a team player for improved health. Your team consists of health care workers, personnel staff, insurance representatives and your own personal support network. Learn, to the best of your ability, what is expected of you and do your best to accomplish it. Success on this team requires learning to trust others’ skill, knowledge and word.

During the pre and post-transplant experiences, even the most self-sufficient of families will probably find they need assistance with something. Throughout end stage renal failure, dialysis and surgical recoveries, our family needed help with childcare and lawn mowing. 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 is looking forward to riding again this summer with the children. But to fully experience the joy of the ride, they will have to accept the ups with the downs. So it is with the pre-transplant ride a ride filled with hope that you won’t want to miss.