Waiting for the phone call, disappointments and success

A new lease on life

Gary Gould — Managing Editor

Gary Gould — Managing Editor

Editor’s note: This is the second in a five-part series where I will recount my battle with cirrhosis of the liver and the life changing transplant I received in September. My story is an account of how I overcame my illness, but mostly I hope to heighten awareness about organ donation. I will be a lifelong advocate for organ donation and I want to make others aware of the disease cirrhosis and how to prevent it.

I know virtually nothing about my liver donor. I don’t know if my donor is male or female, how they died or details about the life they lived.

I remember being overcome with a mixture of joy and grief when the call came that there was a compatible liver available for me. The joy was, of course, because I’d receive the transplant I needed to save my life. The grief stemmed from the fact somebody had died and I would benefit from that tragedy.

Why was I so lucky? It was a question I couldn’t wrap my head around at first. It saddened me greatly until Anita, my girlfriend, told me that yes, it was sad, but the donor’s family had chosen to help others by donating their loved one’s organs so others could live.

It was not for me to question how I received this gift of life, but instead I was supposed to accept it and do whatever I could to make sure the gift was not given in vain.

As an organ recipient I am allowed to write a letter to the family of my donor. I have spent weeks considering what I will write. What do you say to people who lost their loved one? I know I want to thank them for the gift I was given and in time I will find the words to express that gratitude.

I was on the organ recipient list for a relatively short time, from April until transplant in September. But it seemed like an eternity, especially as my liver continued to fail and my condition worsened.

From the time I entered what the doctors called “end stage cirrhosis”, which was in November 2016, until my transplant in September, I could feel the gradual decline. My coloring worsened, the whites of my eyes yellowed and physically I felt terrible. Some days it was a chore just to get out of bed and go to my job.

I had a couple bouts with a condition called hepatic encephalopathy, one of the more serious side-effects of cirrhosis of the liver. It is a syndrome observed in patients with cirrhosis. Hepatic encephalopathy is defined as a range of neuropsychiatric abnormalities in patients with liver dysfunction. Hepatic encephalopathy is characterized by personality changes, intellectual impairment, and a depressed level of consciousness.

The most serious issue I had with this was a day I sat at my desk while working and I literally zoned out the entire day. At times I didn’t know what I was doing, where I was or who was around me. The staff thought I was just tired, nodding off at my cubicle, but I was actually lost in a thick fog. When I finally realized what was happening, I had to call home to get a ride. The next day I was better, but it was scary while it lasted.

Another issue I experienced was where my liver, now demanding more blood from my body, caused a portion of my blood supply to become un-oxygenated. The result was a condition where “shunts” formed in my lungs to divert more oxygen to my blood – causing me a shortness of breath and low oxygen levels. This prompted doctors to put me on oxygen, eventually around the clock.

Adding insult to injury, I was offered a liver in August which turned out not to be usable, after I was already prepped for surgery. To me it seemed like the end. I thought I would be extremely fortunate if I were offered a second liver before my liver completely failed. So I returned home and prepared for what could have been the end.

Just weeks later, I was offered another liver and as I drove to Detroit for what I believed could be another false alarm, I prepared for more disappointment. I went through the routine, putting on the gown, going through the blood tests and readings of my vitals, still thinking the surgery was not going to happen.

Then the hospital staff began to put the IVs in me and suddenly it seemed like this was going to happen after all. I don’t think I really believed it until I was told to say goodbye to my loved ones before I was to be put under anesthesia. As I was wheeled into the operating room the reality of what was happening finally hit home – the surgery was going to happen.

I was scared. What if I didn’t wake up? What if something went wrong and I rejected my new liver? I was afraid I was going to panic, until the staff in the operating room went around and introduced themselves and explained their role in the surgery. After introductions I felt more at ease, though it may have been the flow of anesthesia now coursing through my IV. I almost introduced myself, seeing as how I now was acquainted with my surgeon and the staff.

But the gas being pumped into my lungs through the mask they had placed over my nose and mouth made a reply impossible. Soon after, everything went dark and the surgery began.

To be continued next week.

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