Myelofibrosis caregiver: 3 reasons to choose MD Anderson for treatment
In the spring of 2017, my husband Bill and I were getting ready to travel and do some charitable work. We’d finished raising our children and had been very active in our grandchildren’s lives, so we were looking forward to some time for ourselves.
Then, Bill was diagnosed with myelofibrosis. And all of our plans came to a grinding halt.
Fortunately, we knew what to do. One of our daughters was born with Down syndrome, and we’d learned very quickly that you can’t count on the best medical professionals to drop into your lap and perform miracles. You have to do your part, too. So, any time a challenge comes along, we make it our mission to find the right people, decide on a solution and work together for the best possible outcome.
1. Knowledgeable physicians with incomparable expertise in myelofibrosis treatment
I’ve worked in health care for about 30 years. So, I was already familiar with MD Anderson’s reputation. We’ve also known several people who chose MD Anderson for their cancer care. After our trip around the country in 2017, we realized MD Anderson was right for us, too.
After Bill’s diagnosis, we met with myelofibrosis specialists in Chicago, Indianapolis, New York City, Phoenix, Rochester and Seattle before coming to Houston. Ultimately, we chose MD Anderson because of its doctors’ expertise. Srdan Verstovsek, M.D., Ph.D., — or “Dr. V,” as he asked us to call him — was the most knowledgeable physician on myelofibrosis we had ever met.
Dr. Verstovsek was not only aware of all of the clinical trials happening internationally; he also knew who was conducting them, if they were still accepting patients and what the status was of every single one. He was phenomenally informed. And he went through the spreadsheet of clinical trials we’d compiled to decide on the best plan for Bill.
We were elated that he paid such careful attention to our needs and wants. We had just spent the better part of a year traveling the country, going from expert to expert. And instead of the medical jargon, general statements, discouraging news and poor prognoses we’d encountered at other places, MD Anderson gave us hope, encouragement and a PLAN! Finally, we had found the expert we were seeking.
2. A team approach to myelofibrosis treatment and care
Another thing that impressed us about MD Anderson was that we had medical professionals from so many specialties working together to care for my husband — and all of them understood the unique challenges of stem cell transplant patients.
During my husband’s procedure, for instance, he started developing a bacterial infection. We were completely unaware of it, but Bill’s daily bloodwork alerted the infectious disease specialists that trouble was brewing.
As it turns out, they were already watching for it. So, Harrys Torres, M.D., ordered Bill’s central line removed late one night and began an antibiotic treatment immediately. As a result, the infection never ever gained a foothold, and it didn’t impact our lives. But it did make us much more aware of the value of having a true team behind us.
We were also grateful for the expert guidance of MD Anderson’s rehabilitation staff. Our outpatient physical therapist, Rhodora Fontillas, was particularly wonderful as Bill recovered from the transplant. She was funny, focused, well-informed and a wonderful coach.
Rhodora also turned out to be a godsend when Bill contracted a serious fungal infection in June 2019. His recovery from that was even tougher than from the stem cell transplant. But Rhodora was a fantastic guide in rebuilding his lungs and muscle tone — because she has experience in both areas.
3. Personalized attention and every type of support
One of the most surprising — and meaningful — interactions at MD Anderson was with the chaplain. She created a special prayer just for Bill. And when the stem cells arrived from the donor, the chaplain stood on one side of him, while a nurse stood on the other side, holding the bag of cells. They reached across Bill and held hands, while I stood at the foot of the bed as the chaplain read the prayer aloud. It was a very emotional and uplifting moment.
Bill’s stem cell transplant marked a new beginning for us. A wonderful 21-year-old woman had literally given a part of herself to save Bill's life, and we were -- and are -- so incredibly grateful.
Looking back with gratitude and forward with hope
Now, we are looking forward to the day that Bill is fully recovered from the infection he caught last summer, even after he’d recovered his strength and stamina post-transplant. Unfortunately, he was still vulnerable to infections, because his immune system had not yet fully recovered. And it was a very serious illness, so he was hospitalized for almost three months.
We’ll be glad when we are far enough down the road that we don’t need to even think about graft vs. host disease anymore. We’ll also be glad when Bill’s immune system is back within normal ranges, so we can truly live our lives the way we did before his diagnosis. Until then, we are working hard to ensure that each day is valued and that we are doing all we can to remain as healthy as possible. And we’re extremely grateful to MD Anderson for everything its doctors have done to get him this far.