@davi0937 that is great you slipped into that trial just in time! I think hemoglobin affects how people feel and may make them feel short of breath too. I only showed slightly low hemoglobin on the day of my bone marrow biopsy and it miraculously improved on its own on all my subsequent labs for which I am grateful to God with my taking nothing.
You are fortunate to still get to make your decision next year on which Medicare plant to take. I haven’t had medical insurance from my work for quite a while, so I was on my husband’s and it was not helpful for what I have I have with my swollen non painful right finger joint so I took Medicare when I turned 65. I have always been well so just took an Advantage Plan. With the Advantage Plan I have currently, if I needed a bone marrow transplant, I would have it at City of Hope which I am not sure is better than UCSD which is closer. I really do not know either’s track record on bone marrow transplants for myelofibrosis. Honestly, unless I need one I am not motivated to get one. I was not aware that the mutation you mentioned that you have made transplant such a sure need in the future. I was not told mine does, so I hope that is correct. I did see a bone marrow transplant specialist from City of Hope so I would think he should know. I know he seems confused why I was sent to him but he was very nice. He made it seem like I am in a category of myelofibrosis that really is not defined but somewhere between prefibrotic myelofibrosis and the next level because pathologist graded my bone marrow fibrosis as 1-2 of 3 which really is not how it is graded. I have no symptoms but do have high platelets.
Have a good week!