25th April 2007
I also have hemolytic anemia (have had it all my life) and at times have had HgBs as low as 5 and 6 (which required immediate transfusions). However, I am on Aranesp 2x a month which helps to boost the hemoglobin but my average hgb is about 8.5. I guess your body starts to compensate after a time.
On a day to day basis my life is totally normal. However, when I am not well (with a virus or when my son or husband has passed some illness on to me), I get very fatigued, an extremely rapid heartbeat, headaches, and anxiety. In fact, I am experiencing some of this right now.
Besides the aranesp, I take Foltx every day. I try to get lots of sleep and to know my limitations -- no cardiovasular exercise, no drinking, no late nights and to stay away from sick people.
When I get these anemic crises (as my doctors and I often call them), I know I have two choices -- transfusion or to rest in bed for as many days as it takes until I feel better. In the late 80s and early 90s I opted for transfusions but a few years later I learned I also have hemochromatosis (iron overload) so I do not get transfused anymore because I cannot stand the thought of putting more iron into my body.
I know it is scary and frustrating. I have some other medical conditions on top of the two mentioned here. It is easy to get bogged down in it and feel self-pity. When I feel this way, I always try to think of people who have it worse than me. I guess it is all about perspective. Good luck.
On a day to day basis my life is totally normal. However, when I am not well (with a virus or when my son or husband has passed some illness on to me), I get very fatigued, an extremely rapid heartbeat, headaches, and anxiety. In fact, I am experiencing some of this right now.
Besides the aranesp, I take Foltx every day. I try to get lots of sleep and to know my limitations -- no cardiovasular exercise, no drinking, no late nights and to stay away from sick people.
When I get these anemic crises (as my doctors and I often call them), I know I have two choices -- transfusion or to rest in bed for as many days as it takes until I feel better. In the late 80s and early 90s I opted for transfusions but a few years later I learned I also have hemochromatosis (iron overload) so I do not get transfused anymore because I cannot stand the thought of putting more iron into my body.
I know it is scary and frustrating. I have some other medical conditions on top of the two mentioned here. It is easy to get bogged down in it and feel self-pity. When I feel this way, I always try to think of people who have it worse than me. I guess it is all about perspective. Good luck.