Have not posted in a long time. However, I do read all posts. Thank you all for them. Two things have occurred recently. I had my fourth phlebotomy ten days ago. Hemoglobin over 14. First time at a hospital. Usually I go to One Blood, which is a donation site. Never had a problem there. They remove the blood by gravity, takes about 25 minutes. I feel fine after. At the hospital they used a vacuum and took 500 ml in five minutes. After about three minutes when finished, I nearly fainted, lost bladder control, severe sweating. I was immediately connected to oxygen, monitors etc. As an old RN I seriously thought I had coded as all monitors were sounding. It was a terrifying one hour. NEVER again will I return there. Oh, I was diagnosed with PV just over a year ago.
Next, I have been having "weak spells". Feel like I am going to pass out. Have no clue why. Comes over me rather suddenly. I am well hydrated when it happens. Not sure if there is a glitch in my BP or hypoglycemia. Scary feeling to say the least. Lasts only a few minutes. Just wondering if any other PV person experiences this. I am just tired of feeling scared not knowing when it will happen again.
When I return to Florida in Nov. I will find a new hematologist for sure.
Sending love n hugs to you all. You are a great group.
Thank you!
Written by
Kinsalelady
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What a horrible experience.Was just wondering about you as you had 'gone quiet'!
I suppose summer ,everyone is holidaying ,seeing family etc.I still often get very weak and think I am going to faint,have done so on occasions,it's the 'wall of fatigue 'we hit.I had venesections only when I first started with P V and was closely monitored ,as I am small and slim they did not like removing too much blood. Here in France ,they only do it to get levels to reasonable level,then control with Hydrea. Very shocked at your horrible time.Try to keep strong,honestly you get used to the weak wobbly days and work around it. Send you warm thoughts and best wishes from a still hot France,the heat too is a killer for us.,I have had lots of problems with high temperatures this summer.Keep well as possible....Sally
Oh Sally, thank you so much for your loving thoughts. I don't think I remember that you live in France. I am soooo jealous. I have been studying French throughout high school, College and many on going tutors. I can read a book but am terrified to speak it as I have no one to speak with on a regular basis
So sorry that you have those weak spells but it absolutely helps to not feel alone. I really feel scared when I get them. I do not feel fatigued when they happen and they do pass. I will try to hang in. Thanks again. ❤️
I was having blackouts at work when I was diagnosed w PV. They did phlebotomies abt twice a month for a few months, then slowly spread them out so I wasn't so weak. I felt so weak & faint for seems like the first couple of years. I'm now only having phlebotomies maybe twice a year. The only time I feel like I might hit the floor is when it is just about time for another phlebotomy. Just seems like there isn't enough oxygen making it to my brain. Curious tho, are you anemic? That will have you faint.
Hi, no not anemic. Just have no clue why this is happening. Perhaps when I get a new hematologist I will get some answers. If I do I certainly will share them here.
Thanks Steve for your reply. I added the post re my BP and pulse because I forgot to mention it as part of the previous post describing the effects of the phlebotomy that was done too rapidly. My normal pressure is 122/76 and normal 72 pulse.
Thanks Katie but I live on the east coast in Vero Beach. Perhaps it would be worth a trip over for a consult. I'll see how it goes when I return in Nov. Hugs, Harlie
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