My Journey with Severe Aplastic Anemia

I was diagnosed with Severe Aplastic Anemia in mid-July 2023. I was 69 years old. I was on a river cruise on the Rhône in France. I had been active and healthy. My symptoms were very mild. I noticed that sometimes walking uphill left me a bit winded but more evident was a rash around my ankles I attributed to heat rash due to wearing wool socks. When the rash did not go away, I went to see my primary care physician and she recommended a blood test.

After my blood test results, I was admitted to the ER at the University of Kansas Medical Center and was diagnosed with Severe Aplastic Anemia. After my initial hospitalization, I was then referred to my current physician, who did a thorough intake evaluation. The doctor recommended I undergo a hospital treatment.

I stayed in the hospital for 7 days during the treatment, which went well, and was released home provided I had 24- hour care for the first week. I had many medications to take upon going home. My niece, Caitlin flew in from Canada and stayed with me and helped me with meals and organizing medications and my house.

Since July of 2023, I have been treated at the KU Medical Center Cancer outpatient clinic. Initially, I needed to go to the clinic three times a week for blood analysis. I underwent blood transfusions routinely at least once a week to add platelets and hemoglobin and my weekly clinic visits went on for at least four months; three times a week. During that time, some of my medications made me nauseous. I lost 20 pounds over a month and a half’s timeframe.

Once my medications were adjusted, I felt better and put on weight. I’m pleased to say that my doctor pronounced me “in remission” in January of 2024. Medications were adjusted and my clinic visits are now reduced to once a month.

Now, I feel better, I can walk several miles a day and participate in most regular activities. I am very grateful for the care I’ve had from my medical staff, friends and family throughout this time. I’m optimistic about my life ahead.

About #RAREis One

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