Most lives are defined by significant moments.
Births. Deaths. Graduations. Weddings.
The moments in my life seem to be of a different sort. They’re divided into three milestones. First, surviving the ravages of hepatitis C (hep C), then experiencing end stage liver disease (ESLD), and now thriving, following a life-saving liver transplant.
August 14, 2009
This is the day my heart stopped, and the varicose veins in my esophagus burst, causing me to go “code blue” (aka, flatline) as a result of then undiagnosed end stage liver disease.
I’d been diagnosed with hep C 6 years prior, when there were many unknowns and one treatment option with difficult side effects. I felt good and didn’t pursue knowledgeable care.
Later, I’d realize that the itching and rapid weight gain — over 60 pounds in a matter of weeks — was a result of cirrhosis (severe liver damage).
Chief among my challenges was hepatic encephalopathy, a condition that can cause blackouts, dementia-like symptoms, changes in personality, and coma, among other things.
I relocated from my home state of Nevada to Sacramento, California, in October 2009, where I was able to qualify for the national liver transplant waiting list at California Pacific Medical Center.
After my first course of hep C treatment, it became obvious that it could be many years before I’d be offered a transplant. In early July 2012, I relocated a second time, to Florida, in hopes of being accepted on a shorter waiting list there.
As a professional musician, I was without insurance when I got sick and could no longer work. Because I was on a ventilator on life support, I was able to qualify for Social Security Disability, which included Medicare.
Everything that I’d been building was sacrificed in pursuit of my health: My motorcycle, boat, stage clothing, and sound system were liquidated and used to pay expenses.
In the summer of 2014, I underwent my second course of treatment. In early 2015, I was finished with treatment and began the 6-month wait to confirm that I really was cured of hep C.
My efforts to stay healthy seemed to be working, but I was certainly not functioning well. I began to wonder how long I would be caught in this “too sick to function, too healthy to get a transplant” limbo.
Unexpectedly, I received my first call for a possible liver transplant. I received two more calls over the next few weeks, resulting in hospital admissions. Eventually, I’d be sent home three times, disappointed in not receiving a transplant, yet glad that someone even sicker than I was had been granted a second chance at a healthy life.
After those three calls, the phone went silent. I carried it with me constantly. My bag was packed, and I was mentally prepared.
Eventually, it led to my next significant moment.
June 2, 2015
That’s the day that I received a liver transplant.
Late on June 1, 2015, I received a call from Tampa General Hospital that this time, I was the primary candidate.
As I was in the pre-op, one of the doctors on the team came in to tell me that my hep C had returned. They were confident, though, that with more new treatment options in development, a cure for me was in reach. The surgery was cleared to proceed.
Surgery began at 7:30 p.m. on June 2. Shortly after midnight, my surgeon emerged and declared to my caregiver that the procedure was both complete and successful.
I woke up at 7:30 a.m., just after I was removed from the ventilator, and my first walk around the nurses’ station took place just a few hours later.
Believe it or not, the next 5 days were the most wonderful, invigorating, exciting days of my life. After spending 6 years hoping for this moment, I was able to actually plan for the future.
Now, the hard work that I’d known would be required could begin, and I tackled my post-op therapy and recovery with dogged determination.
I was soon walking a couple of miles daily. I still walk regularly as part of my continued pursuit of good health.
Six months later, some abnormalities in my bloodwork indicated that my new liver was experiencing some stress. A liver biopsy revealed that my new liver was being damaged by hep C and was already at level two fibrosis. I soon entered hep C treatment for the third time.
This time, Daklinza was added to my previous regime of sofosbuvir and ribavirin. Six months after completing this round of treatment, just 1 year after my transplant, I was declared cured of hep C.
My cure marked the end of the 1-year intensive observation period that follows most transplant procedures. I was cleared to travel, and the medical team in San Francisco was willing to accept me back into their program for my follow-up care, so I packed my truck and headed home to the west coast.
Now, almost 7 years post-transplant, I find myself at another critical moment.
May 1, 2022
This is the first day in 13 years that I live as a self-sufficient, tax-paying member of American society.
While this may seem anticlimactic after the life threatening adventures I’ve already endured, trust me, the fear and uncertainty are real.
The transition from state-sponsored insurance to private insurance entails many unknowns, lots of fine print, and often comes with a change of medical providers. With a long and complicated patient history like mine, every detail must be carefully considered.
Being a transplant recipient means I must take expensive immunosuppressant drugs every day for the rest of my life. Those drugs have adverse effects on other parts of my body, so I must have blood tests drawn every 3 months. I speak with my transplant coordinator after each of those lab visits.
I visit my hepatologist in person at least once a year and another time via video. I visit my local GI doctor twice a year. My primary care doctor insists on two visits a year. The drugs I take contribute to both kidney failure and a high incidence of skin cancer, so I visit my dermatologist at least twice a year.
My journey has changed my perceptions and outlook on life. I believe that what I’ve been through has uniquely prepared me to help others navigate a similar path.
I’ve faced death and said my last goodbyes, only to wake up and (eventually) make a full recovery.
I have no time for stress, or anger, and find ways to enjoy being wherever I am, whether I’m sitting in a waiting room, filling out another health history, waiting to have another few tubes of blood drawn, or breathing deep in the deserts and mountains that are my backyard.
I’m glad to be healthy again and continue to work diligently to stay that way. I’m very fortunate to have discovered my love for music at a young age. Because the pandemic began just as I was returning to top form, I currently spend many hours every week practicing and honing my craft.
I live in an area with lots of outdoor recreation opportunities, and I do my best to take advantage of them. I like to ski and snowshoe in the nearby Sierra Nevada mountains in the winter. I play golf, hike, and ride my bicycle frequently in the other seasons, and enjoy our local hot springs all year round.
As a solid organ transplant recipient, any infection can be a very serious threat to my health, indeed my very life. So avoiding crowds and wearing a mask when I can’t avoid them have been part of my routine since my transplant and must continue to be.
Life is full of uncertainties, and I look forward to the challenges that lie ahead. One day, I’ll succumb to the inevitable. So far, that’s not today. Life is good. I hope you’re 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.