Connect
← Return to Polycythemia Vera: Just been diagnosed
Discussion
Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 23 hours ago | Replies (484)Comment receiving replies
PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but im sure I had it before then. with doctors blaming the increasing hematocrit on dehydration. Finally I had a TIA. It makes me wonder how many of us die from a stroke or heart attack without being diagnosed with PV...it's not like they can cut out a tumor..PV affects your entire body....Please, please drink plenty of water to keep the blood as thin as you can. Get under the care of a cardiologist ..ive researched this disease to death and understand it's not for the weak. I read in one of the posts that taking vitamin C resulted in less Thereputic phlebotomies. I find that interesting since my hematologist specially told me not to take vitamin C and iron..I need to research the vitamin C angle. If your able to use AI it's invaluable..im 77 close to 78 if I can use AI so can anyone else, it's very easy..AI pulls from major academic institutions..Information is power.
Replies to "PV JA2 is not an easy disease to live with..I was diagnosised 3 years ago but..."
@jackiecarey
Hello again friends !!
NEED TO MAKE CORRECTIONS
TYPO 🤮 I have been dealing with PV FOR
20 years not 30 years!!
@jackiecarey I was diagnosed with PV last year in November. I’m almost 80 and consider myself in good physical health. I was on 500mg hydrea but last week after my hematologist visit he bumped me up to 1000mg when my platelets went up 50 points. My platelets are hovering close to 600. I have 1 pint of blood drawn every 30 days and drink at least 96 ounces of water daily. I’m hoping when my platelets numbers drop below 400 that I can get back to 500mg hydrea daily. I regularly do Pilates weekly on a reformer and strength training 3 times a week and try to get 4 days of 1 hour of cardio weekly. Generally this is walking with some rowing. It is important to do this I know for your heart health and MENTAL health. All of us with this blood disorder have to remember that our glass is always half full. And my best friend is AI. What a great tool we all have in this!!!
Connect
@jackiecarey
Hello PV FRIEND!! I have dealt with this for almost 30 years ! Unfortunately now it’s progressed into MF MYELOFIBROSIS!
I am 73 years old! But I do not know how to use AI to get most recent and advanced information about
Treatment for MYELOFIBROSIS!
I use MAYO S WEB SITE AND RESEARCH THERE !
So if anyone want to teach me how to use AI ! I would love to attempt! Thank you
Good luck with PV
FEEL FREE TO ASK ME ANY QUESTIONS
YOUR FELLOW PV ! Hanya