Our Unbelievable Journey
In June 2010, I married the woman of my dreams, Ginny Wallace. That August, I witnessed the grace, dignity, and maturity of my children, Cassidy and Dylan, as they dealt with the death of their mother.
Then, in September, just 13 weeks into our marriage, our vow to support each other “through sickness and health” was tested. For reasons still unknown, both of my kidneys shut down and I was diagnosed with life-threatening, end-stage renal failure. After my discharge from the hospital, I began three-and-a-half hour dialysis sessions every other day, where I was hooked up to a machine that filtered my blood in place of my broken kidneys.
Instead of enjoying my time as a newlywed, my entire life seemed to center around preparing for, enduring, or recovering from my dialysis sessions, which in my opinion, are akin to modern day bloodletting. My fellow patients, mostly elderly, from a nearby nursing home, seemed lost, scared and wilting away. Some had lost faith, some passed away and others were waiting to pass away. Some told me not to get my hopes up, that if I was lucky enough to get a transplant, they can and do fail and I would likely end up right back where I started. But somehow I knew with certainty that I would not spend my life in a dialysis clinic.
Immediately we added my name to the transplant list in Buffalo and at the Cleveland Clinic. That’s when we were told that due to the shortage of organs available and my relatively rare blood type (B), the odds of being matched could take up to ten years in New York State.
Instead of becoming discouraged by these odds, Ginny and I decided to become as proactive and informed as possible about the organ donation and transplant processes. We read and researched both topics and started volunteering for Unyts, the local OPO (organ procurement organization) in Buffalo.
As we learned more about organ donation, we discovered that New York State, had one of the worst organ donor registration rates in the nation, a disheartening statistic for someone whose life quite literally depended on the number of donors on the list. Though this was a blow, my faith in my eventual transplant never wavered.
We did, however, struggle with the paradox that exists in the transplant world “healthier” sick people make better candidates for transplant. As a potential candidate, I was scheduled for a battery of tests to check every system and organ in my body to ensure I was healthy enough to receive an organ. I had been seeing a cardiologist regularly and had passed a number of cardiac stress tests in the past, but the transplant team had questions about one very minor irregular result, so I underwent an angiogram on Valentine’s Day, 2011.
Although the doctor was confident that the stress test results were nothing to be concerned about, the results of the angiogram proved otherwise. After the test, the doctor came into the room, visibly shaken, and told me I needed triple bypass surgery to clear partially blocked arteries around my heart. Worse still, one of my heart’s most critical arteries was blocked, a condition the medical world has nicknamed “the widowmaker.” Had I not been preparing for transplant, I likely would have died of a heart attack at some point in the future. I view that day as one of the luckiest of my life.
We were directed to a cardiothoracic surgeon who explained that, because of my complicated medical circumstances, and to allow me to become eligible for a transplant in eight weeks rather than two years, he would not use a heart/lung bypass machine instead, he would perform the surgery with my heart beating. Despite the risks, in my mind there was no other choice but to proceed with the surgery.
The surgery took place on a Friday afternoon, less than two weeks later. After the surgery a room full of machines monitored every breath, level and function. I had intravenous tubes and catheters sprouting from my body. I was so weak that I had my own dedicated nurse. Much to Ginny’s horror, less than 72 hours later, we returned home and she became my round the clock, untrained nurse!
Together, we put one foot in front of the other as I recovered. I resumed my regular routine of dialysis while waiting for the post-surgery clearance that would place me on the active transplant list.
That April, in an effort to alleviate the stress of the previous five months and to prepare ourselves mentally and emotionally for what we knew lay ahead, we decided to visit Ginny’s brother and his wife in Sonoma, CA for the Sonoma Jazz Festival.
Our visit unexpectedly coincided with that of Ginny’s cousin Paul and his wife Janet, from New York, who joined us for dinner and a concert. During the evening, Ginny updated Janet on my condition. Immediately, both Janet and Paul offered to be tested as potential donors.
The need for organ donation is growing at such a fast pace, it has become even more important for altruistic living donors to step up. Living donors can be a great help to patients in need of kidney, liver, lung and bone marrow transplants. However, too few people feel compelled to register as donors, let alone volunteer to be living donors.
In the past, others had volunteered to be tested, but had never followed through, so we didn’t want to get our hopes up. Fortunately, luck was on our side: after initial testing, we learned that Paul was a good match and would be able to donate, so he began more extensive pre-surgical testing.
The joy at finding a potential living donor was dampened by a new dilemma. Because I was a Type 1 (insulin dependent) diabetic, I qualified for a dual kidney/pancreas transplant. This would provide me with a life-saving kidney and a functioning pancreas, which would cure my diabetes. We had been told that receiving a kidney from a living donor was the best option for long term prognosis, but receiving both organs from a single person would also be ideal. Because a living donor cannot donate a pancreas, if I accepted Paul’s kidney, I would likely never receive a “stand-alone” pancreas due to hospital protocols, and I would remain a diabetic the rest of my life. We decided to keep our options open, and I remained on the transplant list as a “kidney/pancreas” candidate while we waited for the results of Paul’s tests.
By the spring of 2012, dialysis was wearing me down physically and emotionally. Although it allowed me to live, it was, in a very real sense, sucking the life out of me. With no other choice, we marched on, focusing on the fact that I might be receiving a kidney soon. Finally, the procedure was tentatively scheduled for mid-September 2012, which still allowed some time for the possibility that a donor might be found for both organs.
In July, Ginny and I attended a surprise party for her daughter who was moving out of the country. My own daughter’s wedding was scheduled for the same weekend. Friends and family flew in from around the country for both events. As it turned out, there would be more than one surprise that weekend. At the party, just minutes before we yelled “surprise,” the Cleveland Clinic called me to say that they had a kidney/pancreas that were potential matches. I then faced one of the most difficult decisions of my life would I miss walking my only daughter down the aisle in order to receive these organs.
In shock, we sat around the kitchen table late into the night, waiting to hear whether the surgeons in Cleveland had visually confirmed that both organs were viable for transplant. Nearly 6 hours after the initial call, we received an answer, the kidney was a good match, but the pancreas was not viable. I was faced with a second decision I never considered – did I want the kidney alone?
In the end, I decided to pass on the kidney. I knew that if I refused the kidney, the next person on the list would receive it, and I felt as though I could not take that opportunity from them, especially since they may not have a living donor, as I did. This decision not only felt right to me, it also allowed me to walk my daughter down the aisle the following day.
I resumed my life of dialysis, doctors and lab work while waiting for the transplant surgery in September. We kept our bags packed, always cognizant that we could receive another midnight call about a potential dual-organ donor.
Finally, on September 24, 2012, nearly two years after my diagnosis of renal failure, Paul and I were wheeled into the recovery room post-surgery; I with three kidneys, Paul with one. Paul and I remain close, trading regular texts about our shared love of music or live commentary on sporting events. I am forever in his debt, while he remains very humble about his life saving gift.
Although I was still diabetic, my days of dialysis were behind me! I was now a transplant recipient. Motivated by my new lease on life, I resumed my volunteer work with Unyts, endeavoring to build awareness of the need for registered organ donors.
A few months into my recovery, I received a call from the Cleveland Clinic saying they had changed their transplant protocols, and I would now be considered for a “stand-alone” pancreas transplant. Buoyed by this news, we immediately activated my name on the pancreas transplant list, and once again, Ginny and I lived our lives with our suitcases packed, jumping to answer each ring of the phone. Over the next few months, we did receive a number of calls about potential pancreas matches. In one instance, we made the three hour drive to the Cleveland Clinic and had just pulled into the parking lot when we received a call saying the pancreas was not viable.
When situations like this occurred, friends and family got very upset. But honestly, Ginny and I believed that this was part of our journey. We felt that when the transplant actually took place, it would be the one that was meant for me. We reminded them to focus less on their personal disappointment and frustration and more on the family who had just lost a loved one, and had made the selfless decision to provide the gift of life to a stranger.
On July 11, 2013, eight months after receiving my kidney transplant, I received a pancreas transplant at the Cleveland Clinic. For the first time in 33 years I was no longer a diabetic, and I am now a double transplant recipient.
Although I’m not a particularly religious person, I know I have been very fortunate. I am so very grateful for the selfless people who made it possible for me to be alive today. I am forever indebted to Paul, whose selflessness saved my life, and to the young man whose life was cut short, but whose family was able, despite their grief, to extend another’s life through the donation of his pancreas.
Even more than my life-giving new organs, the greatest blessing I have received is the opportunity to face my own mortality and survive. Some may not agree, but it has been liberating and I hope it has made me a better son, parent, husband, friend, and human being. I live each day to repay my wife for the love, care, and support she provided when my heart was willing but my body was failing, and my friends for their unending prayers and well wishes. But most of all, I live to enjoy the challenges and opportunities that each new day presents. I know it sounds cliche, but I would not have changed one moment of this long and difficult journey.
It is with great pleasure, then, that I introduce my newest challenge, one I have chosen for myself – taking New York State from the bottom five (it’s currently LAST on the list) in the number of registered organ donors, to the top five, in five years. I call this plan the 5.5.5.Initiative for New York State.
With your help, Ginny and I will accomplish this through our non profit ONE8FIFTY. We chose this name thoughtfully, knowing that ONE person can provide 8 people with lifesaving organs and greatly impact at least FIFTY others through tissue donation.
Our mission is to increase awareness of the need for organ donors through our continuing relationships with the medical, government, academic and religious communities.
HELP US BE THE CHANGE
90% of Americans support organ donation, yet only 30% know the steps to become registered.
ONE8FIFTY intends to be the driving force to change donor INTENT to CONSENT.
If you’re not already an organ donor, please register today.
If you are registered, please share your decision with family and friends.
If you believe in organ donation, help educate others about the dire need.
ONE8FIFTY is a NYS Non-Profit Corporation IRS 501(C)3 designation.
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