I spent years of my life tracking the weather patterns across the United States and monitoring the movements of private and commercial airline flights across the country. Living in New York, I was afraid to go into buildings and subways where I would be without cell service.
I’m not a meteorologist, a pilot, or even a doctor on call. I am a man who spent several years being held hostage to liver disease and hoping for one thing –a call from Mount Sinai Hospital in Manhattan or Nebraska Medical Center in Omaha telling me to race there for a life-saving organ transplant.
My wait began in 2008 when out of the blue I was diagnosed with PSC, primary sclerosing cholangitis, a progressive and debilitating disease that turns your liver bile ducts into scar tissue. Bile backs up into your system causing pain, infections, scar tissue and in turn, causes cirrhosis of the liver. In short, my own body was poisoning me, slowly and painfully. I was in my early 30’s, a successful production tour manager and sound engineer on the road over 200 days a year with the entertainer Michael Feinstein, and living and loving my best life with friends and family. I was nowhere near ready to die.
Not long after the diagnosis, my doctor told me I would eventually die from cirrhosis without a transplant. By 2016, doctors told me I was now ill enough to be placed on the national liver transplant list.
Unfortunately, there are not enough organs to meet the transplant needs in the US — be it a heart, a lung, a liver or a kidney. The national waiting list is nearly 114,000 people. And almost 10,000 of those patients are New Yorkers — including more than 1,100 who need a liver. Many patients die waiting.
To increase my odds of survival, I decided to double list. I researched several other hospitals outside the NY area with shorter wait lists for liver transplants and got accepted to Nebraska Medical Center. I flew there several times to undergo medical tests before they said yes. If a match were found in the Midwest, I would need to get there on a moment’s notice. Hence the relentless flight and weather monitoring.
As the years ticked by I waited as the infections and disease worsened. I was in and out of hospitals while still working, tired and in pain all the time. My whole body itched. All side effects of the disease. The idea that I may not live to see a transplant became more and more real and the reality was sinking in fast. But I was determined to fight for my life.
I spent many sleepless nights feverish, sobbing, itching and in pain both at home and in strange hotels in strange cities and it always ended the same way: a visit to the local emergency room and a stint in the hospital with IV antibiotics. It was an awful way of life, but each time I was admitted to the hospital and treated, I knew I was one step closer to a higher MELD (Managing End-Stage Liver Disease) score, which determines a person’s rank on the transplant list. Those with the highest MELD scores are prioritized for transplant, however, a higher number means you are that much closer to death. It was a numbers game and the stakes were life and death. I absolutely had to win.
With each passing week, I was getting sicker and wasting away. My skin and eyes were yellow from the bile and I lost so much weight that my ribs began to show through my chest. For someone used to putting in 18-hour days in concert halls around the country and riding my bike to get around Manhattan when I was home, just walking one block now was exhausting. Everything hurt and almost everything I ate made me sick. It was torture, but I knew I was slowly moving up the waitlist.
Finally, on the afternoon of January 2, 2018, I received a call from Mount Sinai informing me that they had a potential liver for me. I couldn’t believe what I was hearing. On our way to the hospital, Matt, my husband, and I joyfully called our parents, friends, and neighbors to tell them the incredible news. My long wait was finally over! I was overwhelmed with tears of joy and relief.
Once at the hospital, I was prepared for surgery. They inserted the IV’s, we met with the many doctors, anesthesiologist, and nurses and then waited to be called into the operating room. The moment I had spent two and a half years waiting for was so close at hand.
As we watched the clock slowly tick past the scheduled hour of the surgery, I was handed a cell phone and my heart sank. The surgeon called to tell me that the liver was not viable for transplant. I was devastated. I had been so close to getting a second chance at life and it vanished in a split second. “What do I do now?” I asked. “Go home, just go home” was all he could say.
The next day a blizzard hit New York City and I fell into a deep depression. As the snow fell, my husband and I discussed all the dark thoughts and fears we had been trying to keep at bay for years. I was terrified of dying and I was angry. I thought I had lost my one chance at a second chance.
Then, on January 5, my phone rang late in the evening, just as I was getting ready to go to bed. It was Mount Sinai’s transplant team. “We have a liver. Please be here at 6:00 tomorrow morning. Surgery is planned for 9:30 am.”
To say that I was shocked is an understatement. I had expected to wait for months or even years for another liver, not 48 hours. I was cautiously optimistic. This time, we only called our mothers about the potential transplant.
For the second time, I sat in my hospital gown holding my husband’s hand, feeling scared and excited. Staring at the same clock, 9:30 came and this time I proudly walked into the operating room where Dr. Sander Florman and his amazing team removed my diseased liver and transplanted a healthy donor liver into my ailing body. Six days later, I was discharged home to finish my recovery.
It is hard to believe that it’s a year later now and I am celebrating my first anniversary of being given the gift of life. I am healthy, happy and more grateful than I ever thought possible. I am no longer itching and in constant pain and eating doesn’t make me feel sick. I spent most of December away on holiday seeing friends in California and I’m back working full time. This time around, I’m doing it on my terms, and according to my schedule. No more ER visits. Most importantly I have my life back because a generous New Yorker chose to give the gift of life. It is the greatest gift I have ever received, and I will never stop being thankful for it. For the first time in years, I look toward the future. And I am giving back as the patient advocate on the board of directors of LiveOnNY Foundation and as a volunteer raising awareness for organ donation.
While I know I have been very lucky, there are still more than 9,400 New Yorkers waiting for that gift of life. I think of them often and hope that my story will inspire others to join the organ donor registry and save a life one day in the distant future.
It is truly a miraculous thing to wake up each day feeling better than the day before. I have started checking the weather and the flights again. But now it’s on my terms. I’ve never been to Brazil. I hear Carnival is spectacular.
As written by liver recipient Andy Brattain, 44, an entertainment production manager and engineer. He lives in the East Village.