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The Old Ben is Back! Ben Hohenbrink’s Story of Hope After Myelofibrosis
“Better days are coming!” That’s what today’s Ben would say to himself if he could travel back in time to before his stem cell transplant.. “This process goes faster than you thought it would, and you will make wonderful, lifelong friendships through the process. Life post-transplant is amazing.”
Ben Hohenbrink worked hard and played hard, raising a family of two active sons alongside his wife in rural Ohio. In 2012, when he was only 33 years old, he was diagnosed with essential thrombocythemia (ET). ET is a myeloproliferative neoplasm (MPN), which is a type of blood cancer. At the time, research into MPNs was just beginning to ramp up.
When his blood cancer began to progress to myelofibrosis (MF), a more severe MPN, Ben knew that one day he might be faced with the difficult decision about whether to have a stem cell transplant, the only treatment for MF that could offer a cure.
That day came sooner than he might have thought. After Ben stopped benefitting from the medication he had been taking, and the disease began to progress more rapidly, he decided it was time for the transplant. “It was actually a very easy decision at this point to move to transplant,” Ben told HealthTree. “I felt that my health would not hold out long-term, especially with how fast things seemed to be progressing. I wanted to give myself the best chance for long-term survival,” he said. “Since I am relatively young and in generally good health (outside of the MF, anyway), I felt my overall chances of a positive outcome were good.”
Ben received a transplant at the Cleveland Clinic in December 2024. His brother, Keith, was his donor.
Living gratefully and giving back
Today, Ben’s beaming smile is contagious when asked how he’s doing. “The fatigue is gone, and life is like it was before progression,” he says. “People will comment they ‘got the old Ben back’ when getting together. This process helped highlight what is really important in life and how many people are there to help provide support.”
Ben is committed to supporting others dealing with the challenges of MPNs and contributes however he can to research. Today, he shares his lived experience by serving as a member of the MPN Research Foundation’s Patient Impact Council. “My family’s and my future was one of the big drivers for doing the transplant,” said Ben. Fatigue and other classic MF symptoms had impacted his ability to live a full and normal life. “There are many things I wanted to be able to be present for. This was a path to regaining my ‘normal’ again.”
Although the process of preparing for transplant and recovery comes with significant risk, Ben is very clear about one thing: “Doing nothing was not a sustainable option for me.” So, he kept a positive outlook and found comfort in the absolute faith that his medical team and their expertise would help him through whatever came up.
In the end, Ben’s experience could not have been better. “I was waiting and expecting some of the negative side effects to come, but I was very fortunate to make it through without them,” he said.
He was admitted to the hospital one week before his transplant for the conditioning regimen and was released from inpatient care 14 days after the transplant..There were no restrictions on who could visit at any point during the process.
“Visitors just had to wash their hands and wear a mask while with me,” he explained.
Because Ben lives outside of the required distance from the hospital, he and his wife stayed at the Cleveland Hope Lodge for 80 days, returning home three weeks earlier than expected.
“The Hope Lodge was a fantastic resource that I will be forever grateful for,” said Ben. “I formed great friendships with other patients and their caregivers . . . I had a fantastic support system around me with family, friends, and coworkers . . . to keep spirits high.” This was a tremendous help as each day passed, along with the positive feedback he received on his progress.
What does this extraordinarily grateful middle-aged mid-westerner want to share with others who might face this same decision?
Advocate for yourself. Be your own advocate and do your research. There is no right or wrong answer, only what is right for you.
Use your resources. There are many resources available to help you. Utilize them.
Stay positive. Keep a positive outlook throughout the process. It can be physically and mentally taxing on you, so having a good support system is critical.
Let your caregivers help. You will need to rely on caregivers to help you through the process, which can be just as taxing on them as they help you through the journey.
Be open with your medical team. Each day, you will have to share with your medical team more about yourself than you might expect. Don’t be afraid to be fully transparent. Whatever is going on with you is likely something they have seen or heard before, and they can help you navigate through it.
Read more patient stories like Ben’s by following the link below.
“Better days are coming!” That’s what today’s Ben would say to himself if he could travel back in time to before his stem cell transplant.. “This process goes faster than you thought it would, and you will make wonderful, lifelong friendships through the process. Life post-transplant is amazing.”
Ben Hohenbrink worked hard and played hard, raising a family of two active sons alongside his wife in rural Ohio. In 2012, when he was only 33 years old, he was diagnosed with essential thrombocythemia (ET). ET is a myeloproliferative neoplasm (MPN), which is a type of blood cancer. At the time, research into MPNs was just beginning to ramp up.
When his blood cancer began to progress to myelofibrosis (MF), a more severe MPN, Ben knew that one day he might be faced with the difficult decision about whether to have a stem cell transplant, the only treatment for MF that could offer a cure.
That day came sooner than he might have thought. After Ben stopped benefitting from the medication he had been taking, and the disease began to progress more rapidly, he decided it was time for the transplant. “It was actually a very easy decision at this point to move to transplant,” Ben told HealthTree. “I felt that my health would not hold out long-term, especially with how fast things seemed to be progressing. I wanted to give myself the best chance for long-term survival,” he said. “Since I am relatively young and in generally good health (outside of the MF, anyway), I felt my overall chances of a positive outcome were good.”
Ben received a transplant at the Cleveland Clinic in December 2024. His brother, Keith, was his donor.
Living gratefully and giving back
Today, Ben’s beaming smile is contagious when asked how he’s doing. “The fatigue is gone, and life is like it was before progression,” he says. “People will comment they ‘got the old Ben back’ when getting together. This process helped highlight what is really important in life and how many people are there to help provide support.”
Ben is committed to supporting others dealing with the challenges of MPNs and contributes however he can to research. Today, he shares his lived experience by serving as a member of the MPN Research Foundation’s Patient Impact Council. “My family’s and my future was one of the big drivers for doing the transplant,” said Ben. Fatigue and other classic MF symptoms had impacted his ability to live a full and normal life. “There are many things I wanted to be able to be present for. This was a path to regaining my ‘normal’ again.”
Although the process of preparing for transplant and recovery comes with significant risk, Ben is very clear about one thing: “Doing nothing was not a sustainable option for me.” So, he kept a positive outlook and found comfort in the absolute faith that his medical team and their expertise would help him through whatever came up.
In the end, Ben’s experience could not have been better. “I was waiting and expecting some of the negative side effects to come, but I was very fortunate to make it through without them,” he said.
He was admitted to the hospital one week before his transplant for the conditioning regimen and was released from inpatient care 14 days after the transplant..There were no restrictions on who could visit at any point during the process.
“Visitors just had to wash their hands and wear a mask while with me,” he explained.
Because Ben lives outside of the required distance from the hospital, he and his wife stayed at the Cleveland Hope Lodge for 80 days, returning home three weeks earlier than expected.
“The Hope Lodge was a fantastic resource that I will be forever grateful for,” said Ben. “I formed great friendships with other patients and their caregivers . . . I had a fantastic support system around me with family, friends, and coworkers . . . to keep spirits high.” This was a tremendous help as each day passed, along with the positive feedback he received on his progress.
What does this extraordinarily grateful middle-aged mid-westerner want to share with others who might face this same decision?
Advocate for yourself. Be your own advocate and do your research. There is no right or wrong answer, only what is right for you.
Use your resources. There are many resources available to help you. Utilize them.
Stay positive. Keep a positive outlook throughout the process. It can be physically and mentally taxing on you, so having a good support system is critical.
Let your caregivers help. You will need to rely on caregivers to help you through the process, which can be just as taxing on them as they help you through the journey.
Be open with your medical team. Each day, you will have to share with your medical team more about yourself than you might expect. Don’t be afraid to be fully transparent. Whatever is going on with you is likely something they have seen or heard before, and they can help you navigate through it.
Read more patient stories like Ben’s by following the link below.
about the author
Ruth Fein
Ruth Fein is a health reporter and patient advocate who has lived with a progressive myeloproliferative neoplasm (MPN), now myelofibrosis, for 30 years. She is the author of The Big C ² – stories from the chronic side of cancer.
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