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Thank you both for your replies.
This new doctor admits me to hospital for my transfusions because he doesn't have daycare visiting rights. I have each unit run very slowly over three hours. I have two units one day and the last unit the next morning (I told you he is very cautious). Then I wait an hour and have a post transfusion Hb test. He doesn't like the saline run between units and my port is disconnected overnight.
I'm hoping there has been some mix up with the blood test because a Hb of 85 after 3 units of blood is a worry.
I'm having another check tomorrow but I can already tell that I am having anaemia symptoms. Headache, breathless etc.
Birgitta, I understand now. You have haemolysis of your own blood, not of the donated blood. Do they think the autoimmune problem causing the haemolysis also caused the myelofibrosis?
I know I have had a positive ANA (lowish titre) and atypical pANCA but I'm not sure what these abnormal tests mean.
On a positive note....the hospital has introduced room service. Now you can order anything from the menu any time of day and have it delivered. There are no set meal times. The kitchen makes anything from pizzas to roast dinners. They serve breakfast of bacon, eggs etc all day if you want. It's really nice to order a cup of tea when you want one rather than when it's tea round time. A cup of tea makes everything better.
Regards
Chirley
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