Diagnosed in 2017-2018 through bone marrow tests, I was complaining of tiredness and low energy. I have been in some form of treatment ever since. Aranesp, to increase efficiency of bone marrow failed, after taking shots for months. Occasionally when my Hgb went low (8 or under), I received a unit of blood. Waited for a year for Luspatercept, hoping it would be a “miracle” drug, got it, used it for months, and I’m part of the great majority of recipients who did not have a positive outcome — it’s a “miracle” for the 38% of recipients for who it is effective. I am currently in a blind research study which is reviewing the effectiveness of Vadaxa, which I am definitely getting, and the blind drug Magrolimab. I’m either getting the combo or the Vadaxa and saline. I have great doctors, the medical care at this MDS-Center of Excellence is great. The uncertainty, the constant poking, the weekly bloods and occasional platelet infusions and days and hours in the hospital aren’t “fun,” but I see no alternative. This is an insidious disease and effects each of us somewhat differently. I am able to live with the tiredness and low Hgb and feel a useful part of my family and community and the efforts to enhance my health care status. This is one story, there are a zillion others, take confidence that you’re not alone and that really smart people are trying to figure this out with you.
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