Share Your MDS Story

I was surprised when my general practicioner left me a message saying he wanted to speak with me. When we did speak, he said it looked like I was anemic - he ordered another blood testvto confitm. Sure enough, megalobladtic anemia. Several blood tests later and we were clueless as to a cause. Referral to a hematologist…

After ruling out many potential causes with a battery of more tests, he ordered a marrow biopsy. Sure enough, 5q- MDS. I was 55 and he was saying maybe 10 more years… Maybe more… Hard to say with so few cases of such young people dianosed in the literature.

I took it fairly hard. Now knowing the progression - wait, start meds, get transfusions, then transplant - I continued on wondering how long I could sustsin my active lifestyle (mountaineering, white-water rafting, etc). I decided to retire even though I wad very uncertain I could afford it financially. That decision took me 2 years to finally make.

My hgb levels are now 7.7 and my doc says it is time to start Revlimid. We’ll see where it goes ftom here…