My Journey to a Life-Saving Liver Transplant
Significant moments define most lives.
There were births. There were deaths. There are graduations. There are weddings.
The moments in my life seem to be different. They are divided into three categories. I survived the ravages of hep C, then experienced end stage liver disease, and now thrive after a life-saving transplant.
August 14, 2009
This is the day my heart stopped, and the veins in my esophagus burst, causing me to go “code blue”, as a result of a diagnosis of end stage liver disease.
“I was diagnosed with hep C six years prior, and there were many unknowns and one treatment option with difficult side effects. I didn’t seek knowledgeable care because I felt good.”
I realized that the rapid weight gain was caused by the effects of cirrhosis.
My biggest challenge was the condition that can cause coma, changes in personality, and dementia-like symptoms, called hepatic encephalopathy.
I relocated to California in October of 2009, where I was able to get on the national waiting list for a transplant.
It was obvious after my first course of hep C treatment that I would not be offered a transplant for a long time. I relocated to Florida in July of 2012 in hopes of being accepted on a shorter waiting list.
“I was without insurance when I got sick and couldn’t work. I was able to get Social Security Disability because I was on a life support machine.”
My motorcycle, boat, stage clothing, and sound system were used to pay expenses, and I sacrificed everything I had been building to get my health back.
I underwent my second course of treatment in the summer of 2014). I waited 6 months to confirm that I was cured of hep C after I had finished treatment.
I was not functioning well and my efforts to stay healthy seemed to be working. I wondered how long I would be stuck in this limbo, unable to function or get a transplant.
I received my first call for a transplant. I received two more calls and ended up in the hospital. I was sent home three times because I was disappointed in not receiving a transplant, yet I was glad that someone else was sicker than me.
The phone went silent after three calls. I carried it with me. I was prepared because my bag was packed.
It led to my next significant moment.
June 2, 2015
I received a transplant that day.
I received a call from the hospital that I was the primary candidate.
I was told by a doctor that my hep C had returned as I was in the pre-op room. They were confident that a cure for me was within reach with the new treatment options. The surgery was approved to go ahead.
The surgery began on June 2. The procedure was complete and successful after midnight, when my surgeon came and declared it to be so.
I woke up at 7:30 a.m. after I was removed from the ventilator, and walked around the nurses station for the first time a few hours later.
The next 5 days were the most exciting days of my life. I was able to plan for the future after 6 years of waiting.
I tackled my post-op therapy and recovery with determination, because I knew the hard work would be required.
I was walking a couple of miles a day. I walk as part of my pursuit of good health.
My new liver was experiencing some stress six months later, and that was because of some abnormality in my bloodwork. My new liver was damaged by hep C and was already at level two fibrosis. I entered hep C treatment for the third time.
I added a new regime of sofosbuvir and ribavirin. I was declared cured of hep C after completing this round of treatment.
The intensive observation period that follows most transplant procedures ended with my cure. I packed my truck and headed home after the medical team in San Francisco accepted me back into their program for my follow-up care, because I was cleared to travel.
I am at another critical moment almost 7 years after my transplant.
May 1, 2022
I am a self-sufficient, tax-paying member of American society for the first time in 13 years.
I have already experienced life threatening adventures and the fear and uncertainty are real.
The transition from state-sponsored insurance to private insurance can be a challenge, with many unknowns and a change of medical providers. Every detail must be considered with a long and complicated patient history like mine.
“I have to take expensive drugs for the rest of my life because I’m a transplant recipient. I have to have blood tests every 3 months because of the adverse effects of those drugs. After each lab visit, I speak with my transplant coordinating person.”
I visit my doctor in person and via video at least once a year. I visit my doctor twice a year. My doctor insists on two visits a year. I visit my dermatologist at least twice a year because I take drugs that can cause both skin cancer and kidneys failure.
My journey has changed my view of life. I believe that my experience has prepared me to help others.
I woke up after facing death and said my last goodbyes, but eventually made a full recovery.
I have no time for stress, anger or boredom, and I find ways to enjoy being wherever I am, whether I am sitting in a waiting room, waiting to have another tube of blood drawn, or breathing deep in the deserts and mountains that are my backyard.
I am happy to be healthy again and I am working hard to stay that way. I was fortunate to discover my love for music at a young age. I spend many hours every week practicing and honing my craft because the Pandemic began just as I was returning to top form.
I live in an area with a lot of outdoor recreation opportunities, and I try to take advantage of them. I like to ski and snowshoe in the winter. I enjoy playing golf, hiking, and riding my bicycle all year round, and we have a local hot springs.
“Any infections that I may have, as a solid organ transplant recipient, can be very serious. Since my transplant, I have been wearing a mask when I can’t avoid crowds, and avoiding crowds has been part of my routine.”
I look forward to the challenges that lie ahead, as life is full of uncertainties. I will succumb to the inevitable one day. That is not currently happening. Life is good. I hope you are enjoying it as much as I am.
Dan Palmer is a professional musician, freelance video producer, inspirational speaker, liver transplant recipient, and health advocate. His extensive patient experience provides unique and important insights, and he shares his story in hopes of helping others. Connect with him through social media links found at www.brotherdanpalmer.com.
