Thread: bedridden with low blood volume in pots syndrome
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Old 01-27-2009, 05:07 PM
carol l carol l is offline
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Join Date: Jan 2009
Posts: 1
15 yr Member
carol l carol l is offline
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Join Date: Jan 2009
Posts: 1
15 yr Member
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Originally Posted by gillyann View Post
Hi everyone.. my name is gillyann.. i live in the uk,57 years old and im bedridden due to postural orthostatic tachycardia syndrome..it came to light last year that i have very low blood volume..i have low red blood cells and plasma.. this is the main reason i am bedridden.. i am on fludrocortisone 0.2mg for the plasma and have only just started on epo injections 10,000 units once a week for the red blood cells.. i suffer from a tight chest, breathlessness, bad blood pooling in my stomach and legs.. i have no quality of life at all..my daughter has had to do this post for me..is there anyone else like me or in my position..i would love to hear
hi Im carol from wingham ontario canada I have had pots for 4 years now . It does inprove slightly with time I now can work at my own pace. the worst is getting the doctors to pay attention. the meds suck I have been on floronef atenial midodrine bisoproplol and many more. i also haave vasovagal syncope hang in there it should get better
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