Your tips as I prepare for first phlebotomy

Since I actually had a stroke, I can’t blame my memory issues on the phlebotomies or the hydroxy-urea I am taking… My short term memory has improved, but it certainly isn’t what it used to be… I constantly test myself with some ridiculously long passwords and I think being active riding the bike and walking a lot does help somewhat… It’s convenient when I forget something or make a mistake to just blame it on the stroke… Best to you and all of us putting up with this disease…

dale1k | @dale1k thank you! I didn't blame phlebotomy; I am over weight / high blood pressure caused it but didn't have sort term memory until phlebotomy ... just happened that that way. Glad your memory improved and gives me hope. HU didn't bring down numbers so hoping for phlebotomy will bring down numbers. I have no choice but to do phlebotomy; only treatment plan! I'm in so much pain, go to Walmart and need help walking, miss walking and going places. Grocery store last week , then I could NOT physically get food out of cart (no muscles) . They had to get my husband from the car and bring him in. Take the food and help me to the car. Active days are over. I used to do all my neighbors yards (free charity) LOVED OUTSIDE and OUTDOORS! Don't know if I will have legs 2023 - MF is heartbreaking! Miss my legs! Dalelk prayers and thanks for understanding ....

Wow, so sorry you are going thru so much… I have it easy compared to you.. I was only referring to myself in terms of blaming phlebotomies for memory loss.. I know that medications and procedures effect people differently… I have no pain despite having PV, prostate cancer, heart disease, and a stroke.. I know something will change for me eventually… I just don’t know when, so I try and live every day to the fullest while I still can… Prayers back to you and hope somehow, someway, things get better for you….

dale1k | Thank you my friend; your voice make a difference and supportive words. Every one is different and different things work for them. I'm on 1,000 HU; not helping. (doctor gave me 1500mg- same- it didn't help) Glad you have little or no pain. My sister Karen, we scream out in pain from our types of cancers, this is normal stuff. Nice to have sister that understands. My dad had prostate but died of heart disease Oct 8 2017. My mom had cancer through her body; eyes first and then 17 tumors - spread; this spread through-out her organs/ entire body in one year, diagnosed before Christmas and died before Christmas the following year Dec 18, 2014 . Her mom, Grandma had skin cancer but lived to be 100. But 6/7 sibling had cancer and 3rd generation. This is all normal stuff and it helps that others went through the hard road together. I'm the only one with blood/ bone cancer; had to top them. My sister and I are in a race to see who gets to the finish line first and Thank you my friend, Dalelk prayers

I am going to the heart stroke clinic in a week as they think I had one.but for now I just keep going with the blood drops and hydroxyurea. I would find it strange if I had one and did not realize it,but one day I did fall down and could not remember how I got there.Well to all keep on trucking

As I stated in my post, I thought there was something wrong with my brain due to the slight dizziness… The blood tests and confirmation of the JAK2 mutation that followed got me the diagnosis of PV, which I never had heard of… My appointment with the Neurologist and subsequent brain scan identified that I had a stroke.. As I stated, they couldn’t tell me when it occurred and I certainly didn’t know due to lack of any symptoms. So, I see my Neurologist once a year to see if there is any more damage to the brain… I hope all goes well with you…

albertedward and dale1k , Thank you so much for the information and support (I would have passed up brain fog as nothing, without your voice - I would of skipped brain fog as nothing and forgetting small things - looking for things more, going into a room and not remembering what I wanted (AS JUST NORMAL FOR ME BECAUSE OF PV) Starting to wright everything down; horrible feeling (but writing things now but never had to write anything down before) When you fell and couldn't remember falling; I can 100% relate to you albertedward. Hematologists is one of many specialist and we are now collecting specialist and doctors with funny symptoms . I've been to Neurologist years ago, I have Neurological coughing (A bronchtisis cough that last all winter long / part of anaphylaxis shock) Good luck and take care /prayers