Dan Palmer, a professional musician, was playing at a charity event back in 2003, when he decided to do a good deed: donate blood at the event’s mobile clinic. That decision would end up changing — and possibly saving — his life.
“So I donated blood,” he tells Yahoo Lifestyle. “And then six weeks later I received a letter in the mail saying I had hepatitis C and that I’m never allowed to donate blood again.”
The news came as shock, which was quickly followed by fear. “It freaked me out,” says Palmer, who splits his time between Sacramento, Calif., and Carson City, Nevada. “I had friends who had hepatitis C who had been through the old treatment, which had been hellacious, and there wasn’t a lot of knowledge [about the disease] with health professionals then.”
But with no other options, Palmer went through the drug treatment regimen at the time — interferon and ribavirin. “That treatment was hell,” he recalls.
For many people with hepatitis C, their journey with the disease ended there, resulting in a cure post-treatment. But for Palmer, it was only the beginning of his long path to regaining his health.
That’s because the particular hepatitis C genotype Palmer had — genotype 3 — is notoriously hard to treat, research shows, and it’s not commonly found in the U.S. Hepatitis C has seven different genotypes, in fact, with genotype 1 being the most common in the U.S., constituting about 70 percent of all infections, according to the Centers for Disease Control and Prevention.
Although Palmer doesn’t know for sure how he became infected with hepatitis C, he believes he contracted it from a former girlfriend. “Twelve years after I’d broken off a relationship, a girlfriend called me and said that she had [hepatitis C],” Palmer shares. “Sexual transmission is very rare, so it could have been from sharing a toothbrush or a razor.”
Doctors didn’t know how Palmer would respond to treatment with his particular genotype, and he says he couldn’t get into any clinical trials because most were focused on genotype 1. “Genotype 3 is not so easy to cure,” he says.
After weeks of treatment, Palmer found out that the drug regimen didn’t work. His only hope? A liver transplant. After coming close to finding a donor three other times, Palmer finally received a liver transplant in June 2015.
But he still wasn’t out of the woods. While the surgery replaced his ailing liver, the virus was still in his blood — and it soon started to damage his new liver.
“Six months post-transplant they saw something in my blood work, did a liver biopsy, and discovered I was already at level 2 fibrosis,” he explains. “There are only four levels, and the fourth is end-stage liver failure.”
So Palmer was put on a drug treatment regimen again, this time one that included some newer medications. He took the medications for 12 weeks, coping with side effects including nausea, depression, and fatigue along the way. “I took my last dose and it was not five minutes later that my phone rang,” he recalls. “It was my nurse, saying, ‘We’ve decided to extend you for another 12 weeks.'”
That’s because new research showed that a longer course of the medications is best, according to Palmer. “So if I had stopped it originally, [the virus] could easily have come back,” he says. “I don’t know where I’d be if I’d failed that treatment again.”
That was three years ago and Palmer has had no complications since then. As he puts it, “The outcome has been spectacular.”
He adds: “Even my level 2 fibrosis is reverted now. My liver is probably healthy again. I was cured of what would have been a death sentence.”
Palmer, who is now 56 and is part of the American Liver Foundation‘s national patient advisory committee, has made it his mission to help others ever since.
“Ignorance is the great enemy,” he says. “That’s why I’ve been so adamant. I’ve spoken openly about hepatitis C and my need for a liver transplant and blogged extensively about my journey.”
Palmer says people with hepatitis C have to be proactive. He also recommends taking a caregiver or loved one with you to every doctor’s appointment. “When you go to see that doctor you need to have a written list of questions you want answers to so you won’t forget anything. And two, most doctors see if you’re earnest and honest in your quest for information and you don’t waste their time, they’ll look at your list and say,’ Do you have any more questions?’ You can also write down your answers.”
And if something your doctor says doesn’t feel right, Palmer recommends getting a second opinion, along with reaching out to online hepatitis C support groups about what worked for them.
“If one person can hear this and it helps them go to the doctor or get a second opinion or encourages them to take someone with them to one of their appointments,” says Palmer, “it’s a win.”
May is Hepatitis Awareness Month. Read more about the disease on Yahoo Lifestyle: