After a two weeks of feeling lethargic, fighting headaches, and shortness of breathe, my hematologist ordered another two units of blood, to which I goto ambulatory care in the hospital for tomorrow.My hemoglobin for 3 weeks straight has been between 81-82 (a normal person is around 150), so I get to have a bit of a top up at 830 am.
Generally after a couple of units of blood I feel a little better, and in the past I have had to have had to go a top up of about 2 units about once a year. This year alone, I’ll have had a total of 9 units of blood (5 while I was admitted in the hospital, 4 on an ambulatory outpatient basis.) The danger right now is that the more blood I suck in, I have a chance of developing antibodies that, over time, reject or resist any further blood transfusions, and the whole thing is quite hard on my liver. Plenty of water is required to flush it out garbage that accumulates from the transfusion, of which I drink about 2-3 litres a day anyway, to help flush out my kidney’s of the medication I’m taking.
I take 300 mgs a dayof cyclosporin, which is an immune suppressant (prior to the July visit to the hospital I was at 200 mg per day. Immunosuppressive therapy is one of the standard first treatments for many patients with severe aplastic anemia. The other standard treatment is a bone marrow or cord blood transplant, which is what we are avoiding at all costs, cause a bone marrow transplant would be NASTY! Click here for more info on immunosuppressive therapy of aplastic anemia if you want a good read.
This has been the hardest time though, because after being released in July I felt GREAT, but have gradually noticed over the past month and a half my body getting a little bit slower and slower, as my blood count started to drop. After tomorrow I should feel much better.