On June 17, 2019, one or more cysts on my Polycystic Kidneys ruptured, causing severe abdominal pain. I initially thought the pain was diverticulitis and didnʼt realize my kidney was bleeding into my abdominal cavity. By the time I arrived at the UVA Medical Center 30 hours later, I needed a transfusion. It would be the first of six transfusions I received over my two-week hospitalization.
During that time, I had four surgical procedures including two different procedures to cauterize parts of my ruptured left kidney to stop the blood loss, a heart catheterization, as well as the eventual removal of both kidneys, my diseased gallbladder and appendix. My doctors also installed a catheter for hemodialysis to filter my blood until I could receive a kidney transplant.
As Polycystic Kidney Disease (PKD) is inherited, we had known since my teenage years that I would eventually need a kidney transplant. While I had experienced small cyst ruptures that presented visible blood when voiding, the massive internal ruptures with no visible signs were an unexpected turn of events and definitely not a factor I had considered when planning for my transplant.
The previous year, my nephrologist, who had followed the slow decline of my kidney function for more than three decades, had suggested I start preparing for a kidney transplant. Knowing that complete renal failure loomed in the foreseeable future, he advised me that it was time to get on the organ transplant waiting list. My wife wanted to be a donor, however, she had not yet been evaluated. Consequently, we had no idea when or from whom a compatible kidney might be found, so we joined the waiting list.
In February, four months prior to my kidney cyst ruptures, a good friend found out about our situation and called to let us know she would like to be evaluated in order to become my kidney donor. She told us that during the previous fall, she felt inspired to reevaluate her health as she reached the post menopause stage of life. After taking a Daniel Bible Study along with friends from church, she was convicted to start The Daniel Plan by Warren, Amen & Hyman. Through that plan she had become stronger and more healthy, preparing her for this moment, thus she was immediately ready to step out in faith to offer to become my kidney donor. She has a big heart and a strong faith that she lives each and every day. Her generous spirit reminds me of the following verse from Philippians: “In your relationships with one another, have the same mindset as Christ Jesus,” Philippians 2`5 NIV. As she was willing to give a part of herself for my future well-being, I would definitely say she has the mindset of Christ.
My wife and I were amazed at her enthusiasm and grateful that she would even consider making such a generous, selfless donation. After months of evaluation by the team at the transplant center, she called us, excited to let us know she had been approved as a donor. We heard the wonderful news that her kidney was a perfect match shortly before my kidneys were removed. Her call was a huge boost to my spirits and filled me with a fresh sense of hope. Our unexpected hospitalization revised my transplant game plan with a few wrinkles. We learned I would be required to wait an additional ten weeks for my transplant. During the eighth week I would need to be re-assessed for compatibility with my donorʼs kidney because of the possibility that the six transfusions may have introduced incompatible antigens and antibodies, which could potentially cause a rejection. I also needed time to heal from my surgeries and enable my hemoglobin to return to near normal levels. During the subsequent weeks I struggled with the taxing nature of the dialysis treatments. By late August, I finally had enough energy on non-dialysis days to take increasingly longer walks, that enabled me to improve my physical condition in preparation for the upcoming transplant surgery. Finally, on September 5th, I received a new kidney.
I will forever be grateful to Dee, my donor. She and all the other living donors are my heroes! The selfless gift of her kidney has provided me with the opportunity for renewed health, and a life free of the constraints, limitations and time consumed by dialysis treatments.
As I continue recovering, I count my blessings, and I am filled with gratitude for each new day. It has been an amazing medical odyssey, as well as an emotional roller coaster. Not surprisingly, the path has been sprinkled with a few challenges in route to full recovery, but the bottom line is my transplant has been transformational. Just one day after the kidney transplant, I started feeling better. Only then did I fully comprehend how bad I felt just before my kidneys failed.
Today, without two 15 pound kidneys and all of the associated excess fluid, I am forty pounds lighter. I no longer experience the constant pain and discomfort of PKD. I have full lung capacity and significantly more energy as well. My incisions are still tender, and I continue to have some mild discomfort as I continue to heal. For the short term, my immune system is being medically suppressed, as a result my public outings are limited. However, these minor issues are not my focus, as I eagerly look to the future. My doctors have advised me that when I reach six months post transplant, I should feel “normal” and years younger. I am excited about the prospects for my “new” normal and look forward to doing things I have not been able to enjoy for years, like playing tennis.
My grandmother died from this disease. At that time, there was nothing the medical community could do for her. My father received a kidney transplant and survived PKD. His transplanted kidney worked until he passed away eleven years later from a series of other health complications. Today, thanks to skilled medical professionals, new medications and medical procedures, transplantation is a great option for not only PKD, but also a wide variety of other diseases that cause organ failures. Many people can have their lives restored to a modicum of normalcy. As one of those people, I am grateful for that opportunity.
Many surgeons, researchers, donors and trail-blazing patients across time and geography have invested time, talents, energy and themselves to further the long-term success of organ transplantation. Their efforts provided the foundation for my post-transplant life. I cannot adequately express my gratitude to everyone who has facilitated this second chance to experience a full life. My transplant has transformed a hopeful dream into reality.
For those who are waiting for an organ and suffering in silence, please know that previous transplant patients understand how you feel. While you may be surrounded by people who love you, they may not comprehend what you are experiencing. I and many others have been in your shoes, following similar paths, and we are happy to share our stories. While each journey is unique, many of our experiences are similar. My faith provides me comfort, hope and peace. Family and friends have provided unfailing prayers, support and encouragement. Undoubtedly, there will be unexpected issues that arise. As I discovered, things do not always go as planned, take them in stride and press onward. I know some of the anxieties that challenge you, but I encourage you to keep the faith, and know that you are not alone. I pray that you may have strength for the journey ahead, that you may find comfort and community, and that you, too, may have the opportunity for renewed health.
For those transplant patients and organ donors who are interested in sharing your stories, I am in the process of documenting and compiling encouraging narratives for a book, which future transplant recipients and donors might find helpful and up-lifting. If you think you might like to participate in this project by sharing your story, please contact me. I look forward to visiting with you.