My History of MDS

In July of 2018 I was scheduled to have a colonoscopy. In my pre-procedure appointment, my doctor noticed that in my last regular exam there were some irregularities in my blood work, and ordered tests for Vitamin B-12 and Iron, assuming perhaps that one was deficient.

I almost said no to the testing because there was a possibility that it wouldn't be covered by insurance. (Isn't our system great?). I went ahead with the testing, and found that I had iron overload. My iron saturation was .66 and my ferretin level was 927. The normal range for ferretin is 25 to 400.

I was referred to a hematologist at the New Mexico Cancer Center in Gallup. The treatment for iron overload is to donate blood, which I did. (In the US one cannot donate blood if the reason for iron overload is genetic hemochromatosis. I was tested for this, but the result was negative). After my first blood donation, my hemoglobin dropped below 13 - the level needed to donate blood.

With this result, my hematologist simply said, "It looks like your body stores iron instead of using it." I was not satisfied with that diagnosis, so I sought a second opinion from the UNM (University of New Mexico) Cancer Center. My hematologist there ran more blood tests. When I went back for my next visit, He had another doctor visit with me first - she wanted to do a bone marrow biopsy. I wasn't quite ready for that news, so I declined. When my hematologist came in he explained that the blood test result showed some abnormalities that didn't make sense, and that a bone marrow biopsy would be recommended to find out what was going on. He was very reassuring when I left the office and said, "If I can't figure this out, I'll refer you to someone smarter than me."

Of course, I had to find out what was going on, so I scheduled my biopsy. I'm told that a bone marrow biopsy is painful. Mine wasn't. It was more like a back massage. The local anesthetics disguised the pain. There was some discomfort - but mostly a soothing relaxing massage.

For the follow-up consultation, Dr Atweh walked into the room and announced that they knew what was going on. MDS with 5q- syndrome was the diagnosis.

Since then, I have blood work done at least once a month. What the doctors look at mostly seems to be my hemoglobin. the normal range for hemoglobin is 14-18. My tests have varied from 9.9 to 11.4, with most above 10, which seems to be a turning point - the point at which I will need treatment. Currently my only real symptom is getting tired easily. One or two naps most days and I am fine.

More to come later...