My life had been saved by a donor mom of four grown sons whom I was privileged to meet eight months later.
Yes, becoming an organ donor is a personal decision, but when making such a decision, knowing the facts is most important.
My transplant journey began in February 2009 when I began to fall to the floor during the “assurance of pardon” portion of the church service at Davidson College Presbyterian Church where my wife was senior pastor. One of her associate pastors alerted her to call EMS for someone who needed assistance, not even realizing it was me. EMS arrived quickly and after checking my vitals and affirming that all looked okay, they still wanted to take me to the ER. I hate hospitals but consented to go.
I needed to find out why I was about to fall over in church as if I were drunk, which I have never been. Dr. Jason Mutch, the ER doctor, quizzed me about my history with a focus on any previous liver issues in the family. Yes, my mother and her sister died of what was diagnosed as primary biliary cirrhosis in 1985 and 1990, respectively. After blood sampling and testing, Dr. Mutch discovered that I had a genetic liver condition known as Alpha1 Antitrypsin Deficiency and that it was incurable. So, by virtue of finding out what my problem was, it was discovered my mom and aunt’s diagnosis was wrong. In brief, the molecular structure of the Alpha1 protein enzymes within the liver split, mutate, and became very large. Given their size, the majority remain in liver, scarring the liver tissue until it could no longer function, literally killing the liver. My journey became well defined by virtue of learning about this cirrhosis of the liver. It would require a donor hero, or my days would be over soon!
After the discovery and some basic research on Alpha1, it became clear why my golf handicap had nearly tripled. When the liver cannot function properly, one of the side effects is the production of ammonia which travels to the brain, causing a fuzzy headed feeling. Clinically it is called hepatic encephalopathy (HE). The now severe chronic condition forced me to quit playing my favorite sport! My handicap of 5 was likely gone forever! (Back in 1988, at the age of 38 and long before I even knew about my condition and the incurable cirrhosis, I was the top qualifier in the National Long Driving contest, smacking the ball 364 yards.)
So, the battle had begun. I could now try to get on the transplant list. In order to extend my life, it required a change in lifestyle, ranging from a new diet, more exercise, to eventually not being able to drive due to the HE. The daily routine had changed quite a bit as I was meeting with multiple doctors, traveling to the transplant center weekly, taking a cocktail of medication regularly, and losing the ability to walk normally. It was a struggle. On many days, it reminded me of the combat tour I had in 1970-71 when I served in the US Army infantry in Vietnam. I don’t discuss those days much, but in many ways, pre-transplant days were similar. The big difference between my Vietnam experience and my incurable liver condition was with the liver condition, there was no defense as the body and mind deteriorated. And there were no life-saving procedures that could be employed such as dialysis that could be used with chronic kidney disease or use of an LVAD with a failing heart. My crutch, or fallback was always, “If I could make it through the conditions I faced in Vietnam, I can make it through the transplant journey.” I was confident I could handle the mental issue, given what I had been through. It was the pain and discomfort day and night that was going to be the challenge. Thank the Lord for giving me a high threshold for pain and for answering many prayers was my hope, as I was determined to have a longer life with my wife, son and family. And I knew I had a “calling” to continue to serve God and my community.
After three years, sixteen months of which were on the waitlist, I received a phone call, one that I will never forget. On January 22, 2013 at 9:06 PM, I got “the call” from my angel Tracy, the post op nurse at Carolinas Medical Center. Given the time of the call, I was so excited I didn’t even say hello.
My first comment was a question, “Tracy, it’s a little too late to be calling to find out how I am doing, do you have some good news?” Tracy replied, “Gary, I think we have a match……I am waiting for confirmation from the recovery team within the next few minutes.”
I heard my wife and fabulous caregiver Lib McGregor Simmons walk in the door, following a very long day at the church. We put the phone on speaker and listened as Tracy got confirmation of the liver efficacy. Upon getting the good news, Tracy requested we get to the hospital immediately. Tracy’s last comment to us was, “now don’t hurry and be very careful.” As all recipients know, any changes in your physical condition such as a broken arm or leg, or other even minor mishap could very easily cause one to be removed from the transplant list. Lib and I chuckled at that comment. After the call we looked at each other with excitement that new life was now possible. However, our thoughts quickly shifted to the traumatic loss of life of the donor and the state of the family. In tears of joy and concern, we prayed for the donor and the family. We then packed a few things and headed to the hospital, making sure to drive carefully. That drive was only about 30 minutes, but it seemed much longer as I quietly contemplated a new life, hoping the battle was over.
By mid-afternoon the following day, or January 23, after an eight-hour surgery, my transplant was complete, and I was on the road to a new life. It was about 7 PM when I opened my eyes to see my wife and son. It was immediate that I recognized no pain and I felt like a new man. My total stay in the hospital and the rehab center was 22 days. I am forever grateful to my wife and caregiver who was at my side almost continuously, my fellow church members for all the prayers, cards, letters, and delivery of food. And thank you to all the staff at the hospital and those who helped me recover. Finally, I am eternally grateful to my donor and donor-family and was determined to try to meet them as soon as feasible, if possible, with their desire.
In the next three months I had much time to research in more detail the status of organ donation in our country. I knew then I wanted to make a commitment to increase the number of donors registered – my new “calling.” Contributing time and energy to the goal of saving more lives through education seemed to be a no-brainer. I had the desire to “pay it forward” and do what I could to help save more patients.
Currently I serve as the Facilitator for the region’s organ support group TransplantTalk SC. In addition to supporting each other, there is strong interest and participation by our group to get the word out about organ donation, including volunteering at We Are Sharing Hope events, being guest speakers for local news, and much more. We hope to continue supporting We Are Sharing Hope and Donate Life through guest speakers’ invitations and training sessions for interested volunteers. Saving more lives is all education, awareness and faith!