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Aplastic Anemia Survivor

Matt Fioretti


Aplastic Anemia Survivor

 

  Matt Fioretti, Seattle, Washington
  • Diagnosed with Aplastic anemia
  • Treated with immunotherapy
  • Cured with bone marrow transplant

Matt Fioretti “climbed and unclimbed” Nirekha Peak, southwest of Mount Everest in May 2004. It’s his job as a climber and guide to bring people on adventures of a lifetime, and return them home safely. And that summer, he came home feeling great. 

“I rested for a few weeks and went on a run,” Matt recalls, “then I started to feel a burning in my chest, like I had no oxygen! I wondered if my body was stuck at altitude.”

There’s no way his body could have been stuck anywhere but sea level in his West Seattle neighborhood, so Matt went home and rested and decided to try a run a few days later. But, the same experience occurred and within a matter of 10 to 15 days, Matt could only walk with the aid of a cane—his trekking pole.

“My girlfriend worked for a doctor at a local hospital. She told him about me and I went in to see him to have some blood tests done. When I got home that afternoon they called and told me to get to the emergency room right away. My hematocrit was 10; normal is 40 and my platelet count was down to 3000; normal is 150,000!” Matt says.

It was then that Matt learned he had aplastic anemia. “I thought they were crazy,” he said. But a bone marrow aspiration confirmed the diagnosis.

Diagnosis

Aplastic anemia isn’t just one disease but a group of disorders caused when the bone marrow stops producing red and white blood cells and platelets. Anemia itself occurs when one’s red blood cell count is low making the body feel fatigued because it isn’t getting all of the oxygen it needs.

In aplastic anemia, when the bone marrow stops producing new blood cells there is not only a deficit of red blood cells but also of white blood cells and platelets. White blood cells fight germs and platelets help blood clot. Without these, the body is at risk for infection and uncontrolled bleeding.

This is a very rare disease and some of the known causes are exposure to toxic chemicals and serious infections. Matt was exposed to benzene in May 2004 after his climb while flying home in a Russian transport helicopter called an MI17. “We sat next to canisters of jet fuel that had plastic bags stuck in the tops where lids should have been!” Matt explains. And after he arrived home, Matt became ill with liver inflammation. Both of these experiences could have contributed to the development of his aplastic anemia.

Matt Fioretti, Aplastic Anemia Survivor

After he was diagnosed, Matt spent the following three to four days in a “poor me” state. “But then, I started thinking about it as a climb—and expedition—and changed my attitude. If I didn’t, I was going to die.”  

Treatment

Matt’s doctor said they could treat his disease, but that a bone marrow transplant would likely cure his disease. Matt opted against the transplant initially, and tried the 10-day immunotherapy regime first. “Unfortunately, he did not respond and he therefore required frequent transfusions of both red blood cells and platelets to maintain safe blood counts,” says Dr. Michael Linenberger, medical oncologist at SCCA.

From the time of his diagnosis to the following June, Matt received 87 transfusions. He was having platelet transfusions all the time and his doctor warned that his body could start rejecting those at any time, preventing their survival and benefit.

“Quality of life was difficult back then,” Matt said. He had built his career around being a mountain guide. But during this time, he could barely walk a block without exhaustion.

“I tried yoga, stretching, meditation, and pushing the positive attitude, but I was so tired,” Matt recalls.

Bone Marrow Transplant

He then decided that the bone marrow transplant was going to be his only hope of cure, and that’s when he came to Seattle Cancer Care Alliance.

Gregg Higgins, the donor search coordinator at SCCA, worked hard to find a match for Matt’s bone marrow transplant, but there wasn’t anyone in the U.S. registry. Matt’s spirits dropped. He even has four siblings, who could all have been a match for each other, but unfortunately were not a match for him. Then Higgins asked about Matt’s heritage.

“My parents are first generation Italians,” Matt says. So Higgins searched the Italian donor registry and found two matches.

Flower Juice

On September 27, 2005, Matt went in for the immune system-erasing chemotherapy. “I called it ‘flower juice,’ Matt says. “It’s a great idea to change it to something more positive sounding.”

So, after his four rounds of cytoxan, three doses of antithymocyte globulin, and a day of total body irradiation, Matt had no immune system and had 72 hours to receive the new stem cells from his donor.

“My biggest worry was that the donor’s cells from Italy would miss the plane or be delayed for some reason,” Matt says.

But it all worked out and Matt got his transplant. Three weeks later, his body was producing its own blood again and platelet growth began to kick in, something his body hadn’t done since he was first diagnosed.

“I’d never heard of aplastic anemia,” Matt says. “I was very responsible about what I had to do, but I didn’t read too much about it. I didn’t want to know about the statistics. My doctors were always so positive; I just decided to trust them. We were on the same page.”

Matt spent 30 days as an inpatient at UW Medical Center while his body continued to grow his new bone marrow and immune system, and “seven months on the couch,” Matt says, after that. “My attitude was good. There were days I’d break down, but that happens on every expedition at some point.”

It took a while for his platelet count to level out; in 2006 his count was between 1000 and 7000; and he experienced some graft-vs-host disease. There were a few trips to the ER during his recovery, but in late 2006, his platelets found their stride, and by February 2007, Matt was feeling better, about 60 percent normal, he says.

In October 2007, Matt went back to the Himalayas and led a trek with nine people. “It went well, and totally positive. But when I got there, emotionally, I had some trauma that was still there. We were going toward a remote area and were staying at a monastery before continuing on, and it hit me heavy. I was only with my climbing partners by this time, and I realized I just wasn’t mentally ready. It was too much too soon. So I called off the climb.”

Matt leads climbing expeditions and treks to the Himalaya range every year. He has completed two first ascents and the 6th highest peak in that range. Matt is feeling back to normal, running his training runs, climbing local peaks, and using his trekking poles for their intended use and not as canes around the house.

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