Aplastic Anemia Survivor
|Jennifer Migliana, Concord, Washington|
“I was very fatigued at the time and had crazy headaches,” says Jennifer Minglana at the time she was diagnosed with aplasic anemia at age 17. “It was like a basketball was bouncing in my head.”
But, being an active teenager, Minglana ignored her symptoms for as long as she could. When they persisted, she decided to go to the doctor. Diabetes ran in her family and she wondered if maybe she too was diabetic or hypoglycemic.
“My initial CBC (complete blood count) was abnormal and we got a phone call in the middle of the night. The results indicated that I might be hemorrhaging and they told me to get to the emergency room to rule out physical trauma and bleeding.”
When the midnight run to the hospital didn’t provide any answers, they were instructed to return in the morning to see a specialist. “When we arrived, she was already on the phone with a pediatric oncologist,” Minglana remembers.
It took a biopsy to rule out leukemia and other forms of anemia before the diagnosis of aplastic anemia was determined.
Options for treating aplastic anemia were not plentiful at the time, so Minglana received blood transfusions and platelet transfusions to help correct her abnormal blood counts and relieve her symptoms. She also received antithymocyte globulin (ATG) treatments off and on for the first six years after her diagnosis. ATG is a horse serum that contains antibodies against human T cells and is used in an attempt to suppress the body's immune system, allowing the bone marrow to resume its blood cell generating function. Treatments take a week to administer, “but they’d keep me going for about a year until my counts dropped again,” Minglana recalls.
“I had an ATG treatment in 1997 and 1998. In late 2000 my counts dropped again and I was restarted on a low-dose of prednisone that caused me to gain weight. I was getting married and wanted to fit into my wedding dress and so I came off the prednisone. By early 2002, I wasn’t doing very well and they again gave me an ATG treatment, but this time it was a rabbit serum and it didn’t work,” she says.
Feeling crummy, Minglana became transfusion dependent again. She’d receive platelets about once a week and blood every two weeks. But a month later, she still wasn’t “right” and she and her mother began researching the prospect of a bone marrow transplant and found Fred Hutchinson Cancer Research Center. “They’re experts in aplastic anemia and in September 2002, we made an appointment for a consult,” Minglana says.
Minglana came to her first appointment at the Transplant Clinic at Seattle Cancer Care Alliance, located on the Hutchinson Center campus, and was impressed by the care she received.
“They gave me a game plan, the risks and benefits of transplant, and we decided it was the only choice I really had,” Minglana says. “I could take on the six months of treatment or not make it much longer.”
So the search was on for a donor. Minglana’s sibling wasn’t a perfect match, but by December there were three potential donors and by the end of that month, the perfect donor match was found in Germany.
At the end of February, Minglana began her outpatient preparations for transplant at SCCA and became an inpatient at UW Medical Center on March 13 for five days of inpatient chemotherapy treatment and radiation prior to receiving the bone marrow transplant. “I was pretty loopy and feeling poorly that week,” she says.
On March 19, 2003, with her grandmother, parents, and husband present, Minglana received her transplant. “It took about eight hours to infuse the cells,” she says. “I was determined to be awake during the transplant, too. We played Destiny’s Child “I’m a Survivor” during the transplant and even some Bach since my cells were from someone in Germany!”
“I remember freaking out,” Minglana recalls, “because President Bush had earlier that month declared war on Iraq to start on March 18 and I was worried about being immune suppressed during such a volatile time, (planes probably unable to fly, etc.) but the doctors assured me that people were transplanted on September 11, 2001 and the day after, and everything would be fine.”
Fifty days after being admitted to UW Medical Center, on May 1, Minglana went “home” to recover at the Pete Gross House, an apartment only a few blocks from the SCCA where only transplant patients and their families can stay while recuperating.
“It was a little rough at first,” Minglana recalls. “I had a few bouts of graft-vs.-host disease which was rough on my gut and skin. I was on prednisone, too, so I was like a huge balloon, but I went back to work part time in August and just really started to try to live normally.”
She was on immune support for about six months, and it took about a year to get off of prednisone. She recently stopped taking prophylactic antibiotics.
“The crazy thing is after all of those transfusions I had an overload of iron in my body and so I had to start therapeutic phlebotomies where they’d take out a pint of blood once every two weeks for a while… the exact opposite of what I’d been living with for so long,” she says.
In 2007, Minglana’s aplastic anemia is in remission and her prognosis is good. She ran a half marathon last year for The Leukemia & Lymphoma Society “since there is no aplastic anemia marathon,” and plans to do so again in the future. She’ll have her blood counts checked every three months, but can now continue to dance the hula, practice yoga, and run as many marathons as she wants to without worry of having another transfusion or ATG treatment.
“I can’t imagine having a bone marrow transplant anywhere but Seattle Cancer Care Alliance,” Minglana says. “The Pete Gross House, where we stayed was great. The care I received at UW Medical Center was above outstanding, and the fresh air is in abundance in Seattle (compared to her California hometown). It’s a fantastic place to recover.”