Living with MDS (Myelodyplastic Syndromes)

My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has had many BMBs, infusions of platelets and RBCs. Labs twice weekly. He has had 10 rounds of azacitidine shots. He has progressively gotten weaker. So weak he can hardly walk to mailbox. His counts are extremely low; so low sometimes his chemo is canceled. I feel he will roll over to AML soon. He is scared of SCT, but he’s been athletic all his life. It seems his only chance to live is SCT, and I am just waiting for him to decide. His doctor encouraged it when diagnosed, leavening the decision to him. His metabolic table is perfect. I grieve to see him so weak and unhappy.

My husband was 69 at the time of his diagnosis for MDS and after his first round of chemo one doctor told him he wouldn’t be a candidate for the SCT but like your husband he has always worked out. Our hosp had just started a program where they have the patient do Physical therapy to regain their strength. He was one of the first ones and he did get strong enough for the transplant and is 2 yrs out. So even if he is tired and can ask the doctors for a physical therapy referral. In the beginning he was using a walker and hasn’t used a walker since transplant. One day at a time.