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Hi Jae,

So sorry to hear that you are having such a bad time. My heart goes out to you that you should feel so down . There are a lot of us out here, but it can be hard when you feel isolated in your illness and people canít understand that iron does not cure all anaemia.

18 months ago I was admitted to hospital with a blood count of 5. I walked into hospital under my own steam but by the end of my first week in hospital I had developed a heart murmur, and could not walk 3 steps without gasping for breath. I was diagnosed as having AIHA.

At first the drugs (prednisone + associated support drugs) I was given did not seem to be working, my blood count was still dropping each day. I had an ultrasound scan which showed my spleen was very enlarged as expected. My consultant, suspecting the worst, arranged a CT scan which thankfully ruled out cancer. On day 10 my blood count dropped below 3 and my consultant decided that my body was under to much stress and bought me some more time by ordering me a blood transfusion. (getting the blood was a whole different story).

3 days later the blood arrived, I was in a bad way but my RBC had risen to 3.1
Boy was that blood good. I went home the next day returning every 3/4 days for blood tests. My RBC , which on discharge from hospital had been 8, took a small fall but generally kept rising.

Over the next year I found that too much stress would be reflected in my blood count and my reduction from my original 80mg of prednisone would be frozen for several weeks. I have not been taking any drugs now for 4 months and my RBC has stayed around 12. I still have regular monthly blood tests and it looks like I have developed gallstones as a side effect of the AIHA but it feels like I have been very lucky so far.


My consultant is marvellous he has explained what he has been doing every step of the way. I know that I could have a relapse at any time but I refuse to worry about what I can not control.

Reading this Board has been a lifeline to me and I hope that you will draw as much support as I have from it. Keep posting and let us share what is happening to you.

Jo





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