What Is It Like to Live With Chronic Graft Versus Host Disease

GoodRx Health

Michael Cramer beat hepatosplenic T-cell lymphoma, a life-threatening cancer that is believed to affect fewer than 500 people per year globally. After his health victory in his early 20s, he should have been riding a wave of positivity, like he did as a member of the U.S. Olympic windsurfing development team.

But soon after overcoming one disease, he was in the fight of his life with another: graft-versus-host disease (GvHD).

Michael Cramer was once an Olympic hopeful on the development team for windsurfing. But his health conditions forced him to give it up. (Photo courtesy of Michael Cramer)

"[GvHD] got closer to killing me than cancer ever did," says Michael, a 23-year-old motivational speaker and author who lives in Miami.

Michael needed a bone marrow transplant to survive cancer. GvHD is a condition that can develop after a stem cell or bone marrow transplant from another person. It happens when the transplanted cells see the recipient's body as foreign and attack it.

"[GvHD is] a rare disease, but in the cancer world, you would hear about it," Michael says. "You get a graft from any type of transplant, and the graft attacks the host, which is me. So basically, it's kind of just like rejecting my body and fighting my body."

The uncertainty of life with GvHD

Michael has been fighting GvHD for more than 3 years, and he has no idea if it will ever go away. There were times when he was ready to give up, convinced he would die. But a new medicine has given him a chance to live an improved life with the disease.

Does he think about the disease being deadly? "All the time," he says. "I try not to think about it - try not to manifest it, try not to worry about it - because it's nothing I can control."

He's taken that attitude and (along with his mother, Ashlee) written a book, started a podcast, spoken at events, appeared in the media, and communicated with hundreds of thousands through social media.

Michael Cramer and his mom, Ashlee, have become authors and motivational speakers who help others get through cancer and difficult diagnoses. (Photo courtesy of Michael Cramer)

"My mom and I, we're speakers. We're advocates. We have podcasts. Our website ismichaelandmomtalkcancer.com," he says. "We do a lot of stuff together. We're just really here to help people. We make videos on social media every day that are inspirational and helpful to anyone who's going through something."

Pandemic brings fatigue, night sweats, chills

Michael's health problems began at the start of the COVID-19 pandemic. He began feeling worn down with fatigue. By June 2020, he was also having night sweats and fevers and getting chills during the day.

"I would go in the shower - I'd have to have the shower super hot, because I would always be cold. And then I get out and I'm still really cold," he says. "I was hot and cold all the time, and I knew that was definitely not normal."

Michael was worried. He visited his family pediatrician, thinking it would be safer during the pandemic. She saw something in his bloodwork and told him to see a specialist. He did more bloodwork and then a bone marrow biopsy. The doctor told him he had leukemia or lymphoma. Three weeks later, he was diagnosed with hepatosplenic T-cell lymphoma.

Michael, whose father had died from diffuse large B-cell lymphoma 3 years earlier, was optimistic because of his age and health. His doctors did not tell him how deadly the disease is. According to some studies, median survival rates are 3 to 28 months.

"At the time, I felt like it was just going to be like a short, intense treatment," Michael says. "And I was thinking I could do well and survive, because I was in such great shape. At the time, I was very healthy. I felt bad but not horrible. I was very optimistic."

His Olympic dreams would be put on hold as he faced two to six rounds of chemotherapy and a bone marrow transplant. But he was hopeful.

Cancer goes, GvHD arrives

Michael's treatment went as planned: The bone marrow transplant helped push the cancer into remission. But it was not easy.

"With the transplant, there was radiation and chemotherapy, and I developed a lot of hallucinations, a lot of vomiting, a lot of nausea, a lot of mouth sores," he says. "I was very sick. I was in the hospital for 6 weeks."

Vomiting, diarrhea, and mouth sores are signs of GvHD. Michael also experienced pain in his muscles and joints, another sign.

GvHD happens when the donated T blood cells from the donor's marrow attack their new host's body. It most commonly affects the skin, stomach, bowel, and liver.

There are two main types of GvHD: acute and chronic. Michael's is chronic, affecting his liver, skin, and stomach. He says he had "insane" bouts of diarrhea at first and couldn't keep anything down. He experienced serious skin rashes. He had gallstones, eventually leading to his gallbladder being removed. His liver almost failed and Michael, not able to eat, received nutrition through an IV. The mouth sores were extremely painful.

"I still have to be careful with what I eat because my mouth is very sensitive, because the GvHD is in my mouth too," he says. "Nothing spicy at all or really hot."

Hitting rock bottom, and then finding hope with a new medication

After he spent 6 weeks in the hospital for the transplant, Michael's new disease led to a hospital stay from November 2021 through March 2022. Then he hit rock bottom.

"I was in the hospital for so long that I struggled and wanted to give up and stop all treatment," he says. "I was just suffering for too long. My liver was failing, so that was the biggest reason why I was in the hospital."

That's when doctors prescribed him Rezurock, a medication for the treatment of long-term GvHD.

"That saved my life," Michael says. "It allowed me to be home, and it was helping my liver. I got out of the dark place with that and the support of my mom and my family and the doctors and the nurses."

The FDA approved Rezurock in 2021.

Living with GvHD

Today, Michael lives with the disease. He exercises. He plays the guitar. He travels for speaking engagements with his mother. He hangs out with his siblings and goes out to lunch with friends. But there is much he can't do.

"I can't run, I can't jump, I can't lift weights over 5 to 10 lbs because my joints have been affected," he says. "There's a lot that I really can't do. I can't surf like I used to, or windsurf, or do any of that."

His disease could go away, or it could be permanent. Doctors don't know yet. He continues treatment, taking Rezurock and receiving regular extracorporeal photopheresis (ECP) treatment. ECP is a cutting-edge, cell-based immunotherapy in which a person's white blood cells are separated out and combined with a photoactive medication, exposed to ultraviolet light to "activate" the medicine, and then reinfused. He also must avoid the sun - hard to do in Florida - because exposure worsens his condition.

His recommendation to others who come down with GvHD is simple: There are a lot of treatment options, so get to the right specialist.

"That will make all the difference," Michael says. "Sometimes, oncologists won't know too much about GvHD, and you need to see a specialist. And remember, you are not alone."

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