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I was diagnosed a year and a half ago. It is normal to be freaked out by being diagnosed with a condition you probably never even heard of before. I was too at first. Your #’s are pretty high but so were mine at first. They came down after several phlebotomy visits which I was doing every two weeks. Both your fatigue and palpitations are probably due to your blood being so thick for a long time. Once you get it thinned out you should start feeling a lot better. My doctor then put me on a med called hydroxyurea and now I’m only needing a phlebotomy about every 5 or 6 months. I don’t have any problems with that med and it does a good job of keeping my #’s down. I get a blood test once a month now and my trigger for getting a phlebotomy is when my hemoglobin readings go above 17. Hope this helps. Don’t stress out- it’s not really all that bad.
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I get my labs every four weeks now and am on Hydroxyurea also. I was curious when you said he watches your hemoglobin to determine your phlebotomy? My Doc watches my hematocrit. Once over 45 I go for the phlebotomy. It’s been six months since my diagnosis and I’m hoping we got the dosage correct. It was two months before I needed it which is the longest I’ve gone so far. Maybe I’ll be lucky like you!
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I must say… actually talking with people that have it makes me feel much better emotionally. My anxiety was through the roof. I’ve had to stop looking things up online because that was making it worse. I agree that the palpitations I’m feeling have to do with how thick my blood is. I wish they could do the draws quicker than once a week to remove it faster but I’m sure they have their reasons. It definitely doesn’t make me feel great. Thank you for reaching out. I am grateful to have this platform to talk.