From the Streets to Service: Life after Hepatitis C

From the Streets to Service: Life after Hepatitis C
“For as radical as I was a partier, I became a radical wife and mother.”

It’s rare to see such radical transformation in anyone. But Carleen McGuffey isn’t your typical woman.

Today, Carleen is determined to fill the world with compassion by embracing the outcasts of society that struggle to find love and acceptance the most. But if you were to glimpse into a window and see  her past, this strong woman determined to change the world would be instead a young addict on the brink of death.

In that window, you might see her in her teens, a time  fraught with wild parties, IV drug use, and in a life-changing moment, a terrifying overdose.

“I prepared a shot for two thinking I would only do the half but you know…my inner addict was greedy. And stupid. I started to shoot the whole thing. I remember fading away as my eyes seized back and forth. Out of breath as I rushed and fell to the floor. I guess Mark heard my thud and kicked the door in; he said I was out for several minutes. I came to, his eyes wide and scared, yelling at me, needle still hanging out of my arm, not even all the way injected.”

A year after her overdose, Carleen joined a church and underwent a complete transformation. She found strength and determination enough to leave needles, parties, and dilapidated hotel rooms in her life’s rearview mirror.

Carleen soon met the love of her life; they had six kids. Life was good. But ten years ago, devastation struck when Carleen’s past came back to haunt her.

During a routine check-up, her physician, a doctor with a bit of a reputation for going overboard on blood work, decided to test for hepatitis C.

The results came back with the word no patient ever wants to hear: Positive.

Life was good. But ten years ago, devastation struck.

Mortified,  Carleen could bring herself to tell only her husband. But the hard work of coming to terms with the diagnosis turned out to be only half the battle. Treatment options were bleak, awareness for the disease was low, and the physicians she sought counsel from were often uninformed.

Carleen and her husband were determined not to settle. They went to the library to pour over books and resources on hepatitis C. After countless hours, hey discovered there were promising treatments available via clinical trials, even though their doctors had never made mention of these as options.

Carleen and her family picked up and moved to Colorado, home to some of the world’s leading physicians in hepatitis C. While she was unable to enroll in a revolutionary antiviral clinical trials in progress due to complications from the disease, Carleen was granted access to the medication via a patient assistance program upon approval of the drug. The medication saved her life.

While, in the end Carleen received the treatment she needed, there was a tragic turn along the way. In a routine procedure to biopsy the liver, she was the victim of a medical error. The physician hit an artery. Carleen spent a month in the hospital, and a year in bed on oxygen fighting for her life.

Devastated from watching his wife suffer and discouraged by the lack of resources available for hepatitis  C patients, Carleen’s husband decided to take matters into his own hands. He founded Climbing for Carleen, an organization dedicated to relieving the suffering caused by the disease by tackling important topics like stigma, testing, and medication.

At first, Carleen was uncomfortable with the idea of an organization in her name. “I was initially reluctant and ashamed," she said. "But I didn’t want to discourage him. It’s not every day your husband wants to wake up, change the world, and fight on your behalf.”

Flash forward to today, and Carleen is committed to giving back and sharing her story to dispel stigma. She regularly volunteers with mobile clinics to offer hepatitis C testing and education to low income communities. But the most significant moments for her are the times when she can sit down and talk one-on-one with patients. By sharing her story, she opens the door for them to share, and ultimately get them the help that they need.

“I love patients,” she says. “I love drug addicts I love people that struggle and I love people that are stigmatized. I really have a heart for that.”

And it’s not just Carleen and her husband giving back. For the McGuffeys, it’s a family affair. Their daughter runs the social media for Climbing for Carleen, their son has set up a table outside Walmart to raise money for the American Liver Foundation, and all of the kids have taken turns flying out to DC to speak with their repesentatives.

“I have a heart to serve. I really believe that every person is worthy of my best effort and sincere love.”

I love patients. I love drug addicts I love people that struggle and I love people that are stigmatized. I really have a heart for that.