Your tips as I prepare for first phlebotomy

The 1st time took around 45 minutes… I had to continuously squeeze a ball to help get the blood flowing… The remaining 3 each took around 30 minutes as I was better prepared.. In every case, I had to wait 15 minutes after the unit of blood was taken before leaving.. They wanted to be sure I was okay after the procedure…

Thank you for your reply

dale1k Thank you so much, I am doing funny things, my head is not clear (like went to walmart to pick up prescription 3x and for got, I had money to pay for food at the grocery store- had money in my hand and walked out without paying, they came and said you need to pay for that, when to birthday party and crash on their couch, had picnic and forgot everything at home- kept friends waiting while I had to get the stuff, small stupid stuff and it's NOT like me. I feel so much better but my mind is gone. I think I'm over pushing, I push until I scream in pain, just want to go and do- but my body isn't keeping up with what I used to do???????? Frustration; Do you feel like this 2? The nurse said it was almost 1-litter = pop bottles at store (500???) a bag ??? (about 1/2) I was gone 4 hours albertedward I do feel better but it effects my mind

A quick synopsis of my situation… In late 2020 I felt a minor dizziness and my balance was a bit off… Also had loss of appetite… I was thinking at that time that maybe something was wrong with my brain… I was also forgetting things short term which I never did before.. Went in to the Dr for tests… CBC indicated potential problem.. HCT was very high.. Also saw a neurologist who ordered a brain scan… Saw hematologist who ordered JAK2 mutation test.. JAK2 test confirmed I had PV.. As a “bonus”, neurologist said I had physical evidence of a stroke.. They couldn’t tell me when, just that I had one… I couldn’t believe what was happening.. I keep active , bike ride almost every day, plenty of walking, etc.. I asked neurologist..how could I have possibly missed a stroke?? She couldn’t give me a good answer except to say that normally this would have had major symptoms… I am lucky in that I feel really good, bike any day the weather is reasonable… Hydroxy-urea has my HCT under control.. No pain, good energy level, and short term memory has improved.. Best to you..

WOW! dale1k | @dale1k never guess a stroke - yes! I wouldn't think imaged (ever think of a stroke) my blood pressure can swing 109/70 to 250/159 (highest recoded) in min to hours. I went to several cardo specialist and they said; "not heart" underline "unknow" disease. Hospital missed PV diagnosis 2 years ago but hospital said "blood pressure might be blood disease related; "YES!" PV is blood disease! Now I know it's not my heart but talking all that blood out - put pressure on the high blood pressure. My blood pressure is normal 100/70 to 150/ 110 swings (since the phlebotomy) so getting bad blood out helped it. Just can't think! Cancer does strange things to my body? Never image a stroke ... I will let the doctors know! Thank you my friend! Never in million years think stroke or cancer!

I have had pv for years but just found out after a blood clot formed in my right leg and kept growing to the top of my leg.Then it stopped and after 2 months the vain dissolved. Now I have blood drops and hydro pills.I have had memory loss as you but getting better with time.I have a Newfoundland dog puppy and when I would have a attack and faint the dog new and would lie on me until it passed. Some time I would not know what happened.But now things are much better .No more fainting or getting teary.But PV does really suck until you get it under control
Thank you for your reply Raremiracle2

I wonder how many people with PV also have had some memory problems?? I’m thinking it may be more prevalent than previously thought?? It seems to make sense as blood viscosity could certainly impact flow to the brain.. As I stated in my earlier post, it was only my short term memory that was impacted.. Why short term… ?? Unknown…

Yes my short term memory has changed and it started awhile ago but I have had PV for sometime and did not know it.So it could be Pv or old age.Hope it improves for you.I work on card games to try and improve it.

albertedward and dale1k good to know, I'm doing funny little things - ate sandwich and bitten down, didn't take plastic off and mouth full of plastic, I forget I started laundry yesterday, now my cloth smell and rewash them. Gave my husband lunch box, but no food in it. Haven't stop by cop in years, about 2 ticks in my life NOW ( 1- time for speeding, 2 times hugging side of the road, 2 times for left lights (same - day) All warring and no tickets I have to get to doctors apt. and only one that drives - This short term memory is terrible and never had it until my phlebotomies. I really wonder if it's a stroke (When I go back to doctors I will asked If this is part of the disease or is it a stroke) I saw different doctors all last week M-F . Maybe I'm over run family doctors/ dental visits this week. THIS GROUP IS BLESSING; A group that can really understand- thank a million!!!! I need you guys!

My sister Lucy struggle for years Doctor after doctor (dozens of surgeries) albertedward Lucy went to a doctors appointment after braking her leg. Doctor told her she was just fine and NOT to worry. Her husband dropped her off and picked up her medication and came back, 2-hours after seeing a doctor, my sister age 40 was dead. Cops tried to blame her husband but corner " Autopsy- unknow blood disorder" Never got a diagnosis Dozens of blood- cloths, thick blood, blood pressure swing, non-allergy swelling. I watch my sister vomit every day- in the morning before school and dozens of different doctors over the years! I know she must of had PV but several un-diagnosed disease confused doctors. I have 9 rare disease, but I'm glad i have answers and any diagnosis is better then "NO" diagnosis. I just want answers like you guys - albertedward my heart goes out to you! We are here! Hope you find answers too!