A myelofibrosis survivor’s stem cell transplant advice
In 2008, I was flying all over the country looking for a job. After a flight from San Antonio to Dallas, I got really sick. I had a bad pain in my neck and was exhausted. I felt like crap, so I went to a friend’s house and passed out for 12 hours. When I woke up, I realized I needed to see a doctor.
The physician on duty at the “doc in the box” said, “Look. You need to get to a hospital pretty soon. Your blood pressure is high, your red blood cell count is off the charts, and you’re showing signs of shingles.”
So instead of going to my next job interview, I flew home to San Antonio. I picked up a prescription to treat the shingles and then slept for another 12 hours. I woke up with Bell’s palsy, which makes one side of your face look droopy. After my regular doctor performed a myriad of tests over the next two weeks, I finally got a diagnosis: polycythemia vera.
My journey to MD Anderson
Polycythemia vera is a blood disorder in which the body produces too many red blood cells. It can be managed with medicine and frequent blood draws, and I managed mine that way for seven years.
Then, during a regular check-up in February 2015, my doctor said that my white blood cell count was starting to rise. He put me on a different medication and referred me to Srdan Verstovsek, M.D., a hematologist at MD Anderson. A bone marrow aspiration revealed I’d developed myelofibrosis, a type of bone cancer. If left untreated, it could turn into leukemia.
Treating my myelofibrosis with a stem cell transplant
Myelofibrosis is typically treated with a stem cell transplant, so I started working with Uday Popat, M.D., to find a donor. My sister was only a 50% match, and Dr. Popat wanted a 100% match. I wasn’t in any immediate danger, so we kept looking.
Luckily, I had two perfect unrelated matches through Be the Match, the National Marrow Donor Program. We scheduled the transplant for Feb. 3, 2016. I recovered quickly — with very few side effects — so I ended up leaving the hospital two weeks early.
Today, the only adjustment I’ve had to make to my lifestyle is staying out of the sun. Because of the chemo and stem cell transplant, I’m highly susceptible to skin cancer and graft vs. host disease (GVHD), so I have to be super careful now. Sunscreen is my new best friend.
‘Don’t pass up the cherry pie’
Preparing for a stem cell transplant is tough, so my advice to anyone facing one is to go in as strong as you can. Work out until the day you enter the hospital, and don’t pass up the cherry pie. Trust me: you’re gonna lose the weight. I ended up dropping 50 pounds due to the chemo and the transplant.
I also tell people not to look at how many days they’ve completed during recovery. Instead, look at how many days you have left. Recovering from a stem cell transplant is like a marathon, not a sprint. It’s an uphill battle, but in the end, it’s worth the fight.