My recovery from AA and MDS was part work, part luck, and the result of the efforts of many people, including a stranger who became a sister to me. Here is my story...

First Symptoms. I was originally diagnosed with aplastic anemia (AA) in October 1996. My life was busy with home, work, kids, volunteer work, etc. so I had been ignoring my increasing tiredness and frequent bruising for a year or more. When the doctor saw me he immediately said he thought I was anemic and that we'd need to find out why. He took some blood for testing and said he'd call me with the results. The very next day he called me at work and said that I needed to go to the hospital immediately and that he was sending a hematologist to see me.

Early Diagnosis. At the hospital, I was interviewed extensively by a hematologist, had my first bone marrow biopsy, and received the preliminary diagnosis of aplastic anemia. My white blood count (WBC) was 3.3, hemoglobin (HGB) 4.7, and platelets 14. A normal person typically has a white count of 5 to 11, hemoglobin of 12 to 15, and platelets of 150 to 350.

Early Treatment. I was referred from my local hospital to the City of Hope National Medical Center in Duarte, California, where there was more expertise in treating aplastic anemia. At the City of Hope I was treated with anti-thymocyte globulin (ATG), to which I had a partial response during the first three months after the treatment. I began taking the immunosuppressant cyclosporine and the steroid prednisone and had bone marrow biopsies every 3 months to see what was "going on inside."

Genetic Involvement? The first biopsy after the ATG showed some chromosome abnormalities (including the very rare trisomy 15) in my marrow. This finding cast a doubt on the diagnosis because aplastic anemia does not usually involve such abnormalities; they are more commonly associated with myelodysplastic syndromes (MDS), a related but even more serious condition that, left untreated, can lead to leukemia. We watched the marrow over the months and each biopsy had slightly different results.

Ongoing Treatment. The City of Hope, which tends to follow a conservative treatment program, recommended a "wait and see" approach because I was transfusion-independent and could lead a mostly normal life despite having low blood counts. I continued taking cyclosporine. Typical blood counts were WBC 4 to 5, HGB 9 to 11, and platelets 60 to 80.

Exploring the Bone Marrow Donation Option. When I was first diagnosed, a search was started for a bone marrow donor. A bone marrow transplant is an option for curing aplastic anemia. Donors must be a human leukocyte antigen (HLA) match. None of my family members matched, but a 6-of-6 HLA match was found through the National Marrow Donor Program.

Getting a Second Opinion. While continuing the cyclosporine treatment, my husband and I consulted doctors at the Fred Hutchinson Cancer Research Center in Seattle. Based on the same evidence, doctors there gave a diagnosis of myelodysplastic syndrome/refractory anemia (MDS/RA). According to their criteria, the presence of any chromosomal abnormalities in the marrow, even if they did not appear consistently, was reason enough to confirm the diagnosis. They recommended a bone marrow transplant. They did not believe that cyclosporine would be effective in maintaining my blood counts over a long period since the underlying disease was not really aplastic anemia.

Deciding on a Bone Marrow Transplant. When a May 1998 biopsy again showed the trisomy 15 abnormality, City of Hope concurred that the diagnosis should be MDS/RA and that I should proceed with the bone marrow transplant (BMT). Statistics at that time indicated that I might live only a year or two without a BMT. Untreated, the MDS/RA could progress to acute myeloid leukemia (AML), and AML evolved from MDS is less responsive to treatment than initially diagnosed AML.

The transplant recommendation was confirmed when we went for a third opinion at Cedars Sinai Medical Center in Los Angeles. The consensus was that, as a relatively young person (age 43) with no prior treatments other than the ATG, and no compromised systems (healthy heart, lungs, kidneys, etc.), I was a good candidate for the BMT if I had a matched donor. Our other choice was to wait and watch and continue on cyclosporine, but we already knew that my marrow was not stable so we'd only be waiting for things to get worse. The potential donor was retested and additional "subtype matching" was performed. She matched and was still available.