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Old Sun Jan 14, 2018, 12:08 AM
Barb Barb is offline
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Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 28
Watch and Wait Appears Over

Hello. I was diagnosed with MDS 5q- syndrome in 2006. I have maintained well, a little aranesp in the beginning. I never even needed a blood transfusion as my hemoglobin was consistantly in the 9's with an early dip to 8. My whites have always been fine. I went to see the "vampire" twice a year to monitor. In the last 2 years I have watched my platelets slide down from the high number expected with 5q- syndrome, but they stayed in the 300-400 range.

Well, that was true until this past week. I went to my PCP because I have been having various symptoms from cold chills that feel like they are coming from my bones, frequent low grade fevers, achiness, a weird blotchy rash, and exhaustion and more. She ran every type of reasonable lab.

Suddenly, I am told my ANC is low (not much at 1.2, but I have never had a low ANC), hgb at 7.4, platelets barely in normal range at 152. The kicker being the pathology report said the blood smear showed 10% periphreal blasts. Also my MCV is low?!? It has slid down from high for years to normal, and now low.
My hemo suspected iron deficiency, but my iron tests were all fine.

My hemo is consulting with The James at OSU. He is doing flow cytomotry to do a machine count on the blasts and will likely send me to The James for another BMB. In the meantime, I am giving up my vampire virginity and getting a transfusion Monday. I have asked for Wonder Woman to be my donor. Hoping to feel normal by Tuesday so I have the energy to deal with this.

Barb
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