Because of an organ donor I am writing this article today. In October of 2005 I was informed by my gastroenterologist that if I didn’t have a liver transplant within three to six months I would be dead. My knowledge of organ transplantation at the time was extremely limited. It’s also part of our human condition that we believe bad things, like fatal sickness, will never happen to us. I saw my entire life flash in front of me thinking that 54 was much too young to die. I would never live to see my children and grandchildren grow up. I would never record another song.
“Isn’t there anything else that we can do?” I asked my doctor. I had family living in New Jersey so my doctor advised me that I should try to get listed there. The wait for a transplant organ is much shorter in New Jersey as opposed to New York, where I resided.
Here’s the problem. New York State has the third highest need for organs in the U.S., yet has the third lowest donor registration rate in the country. One of the reasons may be that in New York State, you have to be 18 years old to become a donor, while in the majority of states the age to register is 16 or 17. Another reason for New York’s low rate of donors is the perception of a great deal of paper work involved. It’s not that New Yorkers aren’t generous, they are some of the most generous people in the world.
Most people think that the only way to register is through the DMV. Actually, it’s very easy to become an organ donor. There are numerous ways to do so. The best and quickest way is to go to The United Network for Organ Sharing (UNOS) https://www.unos.org/ and you can register in less than five minutes.
Immediately my doctor called the head of liver transplants at University Hospital in Newark, New Jersey, which is a trauma center that handles numerous organ transplants the area. Time was of the essence, so while sitting in the examination room my doctor made the appointment for me to get screened, tested and listed. UNOS, which runs the transplantation program in the country, is the organization that decides who lives and who dies based on a MELD (Model for End-Stage Liver Disease) system. If you are too sick, you won’t get a liver and if you are not sick enough you may die while waiting. Sometimes deathly ill people have to wait years. My friend Butch Dener, who was a road manager for The Band, waited for over seven years.
I was pretty sick, yet I needed a few more points to be listed immediately. The MELD system, implemented in February of 2002, is a numerical scale used for adult liver transplant candidates. The range is from 6 (less sick) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests. I was a number twenty-two based on my labs and the battery of tests that I had to go through in mid-October — including psychiatric exams, x-rays, CT Scans, MRI’s, stress tests, and weekly exams. If you are drinking alcohol or using any illegal drugs you won’t get listed.
I was getting sicker and sicker each day developing jaundice, edema and ascites (fluid retention) in the legs and the stomach. I knew I was dying. I could see it in the mirror every day. When you’re dying, believe me, you know it. I had made my last will and testament and resigned myself to the fact that this was the end for me. After all, I rationalized, I deserved this fate since I brought this on myself by being an IV drug user for some years. Addicted to heroin and mainlining for several years, Hepatitis was the last thing on my mind. In the sixties, nobody even knew about Hepatitis C. I had problems with my liver since the early seventies though at that time there was no such a thing as Hepatitis C and in the early years I was asymptomatic. The medical profession was calling it Hepatitis, non-A/non-B.
I had said all of my goodbyes and was so sick that I could barely get dressed in the morning. As sick as I was my MELD score was still not high enough to receive an organ. Then the deal came down. I was told that if I underwent a chemoembolization, an experimental treatment of injecting a new type of chemotherapy directly into my liver, it would bump me up 8 points which would give me a MELD score of twenty-eight putting me on top of the list. The Hepatitis C that I had for close to 40 years led to cirrhosis developing into Hepatocellular Carcinoma, a form of liver cancer where a liver transplant is an option.
I had the chemoembolization, which is performed while you’re awake so the technicians can guide the poison to where they need to direct it, asking you to take deep breaths and slightly move at times. After the procedure, I went home and waited to see if my status changed.
A few days later my friends Larry and Teresa came by to visit. I had shown Larry the x-rays which revealed several tumors throughout my liver. To say that I was depressed was a great understatement. But Larry smiled. “Well that’s good news,” he said. “If you have liver cancer you’ll get listed quicker and receive a new liver very soon.” Unbeknownst to me, Larry was friends with Butch who had been waiting for a liver for over seven years. Larry put us in touch and I became informed about the process. I will always be indebted to Butch Dener for encouraging me to “be strong” while explaining his seven years on a waiting list. I still wasn’t sure if I was going to go through with the procedure. I was on the list but I could always back out. The entire process was alien to me and I was scared that there was a chance of dying during the surgery. I also knew that without the transplant I would be dead in a matter of weeks for certain. At least it gave me a chance of surviving.
I was much more fortunate than Butch. I didn’t wait seven years. I waited five weeks once listed. I was listed in November of 2005 and on Christmas Day of the same year at about 11:30 p.m. I received the call. “We have an organ for you Mr. Lyonhart, how soon can you get down here?” said the voice on the other end. I was roughly two hours away from the hospital and there was a snow storm raging outside.
“Do I have to come now?”
“Well we can go down the list to the next recipient if you want.”
Part of end stage liver disease is encephalopathy where ammonia builds up in the brain due to your liver breaking down so you don’t think too well and I wasn’t thinking very well at all.
“Okay, what do I have to bring?”
“Just bring yourself and your insurance card,” she answered.
So, off I went driving down with a friend to Newark in a blizzard. I had already been called two times to come down, was prepared for surgery only to be told that the organ that came in was not a perfect match and sent home. I really wasn’t sure that it would be any different this time. But the third time was the charm.
I had the transplant and immediately after waking up from a nine-hour operation I felt like a new man. As sore and groggy as I was, I could feel the energy rushing through my body and my color was not jaundice yellow anymore. The recovery took about four to six months.
However unbeknown to me, though I had a new liver, I still Hepatitis C. It wasn’t until 2015 that I took the cure for Hepatitis C and I have been virus free for close to two years now.
If I didn’t have an organ donor and the liver transplant I would not be writing this article nor would I have seen my three children and two grandchildren grow up. I lived to see the birth of my granddaughter Liviana two years ago. I would not have made another recording in 2009 and most important I would have never met the love of my life and gotten married this past February.
If more people signed up to be donors so many precious lives could be saved. In 1991 there were 6953 donors, 15,756 transplants and 23,198 people still on the waiting list. Compared that to 2015 when there were 15,062 Donors, 30,973 Transplants, and 122,071 on the waiting list. (Data from optn.transplant.hrsa.gov and OPTN/SRTR Annual Report.) Data includes deceased and living donors.
On the average, 18 people die every day waiting on an organ transplant; in New York, someone dies every 16 hours waiting for an organ. Every ten minutes another name is added to a transplant waiting list. Right now, close to 122,071 people are waiting for an organ transplant. One organ donor can save up to eight lives. The same donor can also save or improve the lives of up to 50 people by donating tissues and eyes. You can become a donor at any age. All major religions approve of organ and tissue donation. A healthy person can become a living donor by donating a kidney, or a part of the liver, lung, intestine, blood or bone marrow. Donation is possible with many medical conditions. In the United States, one person dies almost every hour waiting for an organ transplant. Over 90% of those waiting can be helped by a living donor. More than a third of all organ donors in the U.S. are already living organ donors. They are the unsung heroes of the transplant story.
If you are not an organ donor, then it’s time to sign up to become one. April is the beginning of Spring and a time of rebirth and life. So, give the gift of life, the most precious gift in the world and you will be an unsung hero too.