How bad is a diagnosis of Polycythemia Vera?

Hi @joannecalandra1962 I’m happy you joined our big family in Connect. It helps to be able to talk frankly with others who are going through the same things you are. That’s how I got started in the forum, by jumping into a conversation about having acute myeloid leukemia and receiving a bone marrow transplant.
I’ve been able to share what I’ve learned through my experiences to help others. I guess you could say I’ve gotten a crash course in blood conditions, which I find fascinating. So that’s why I’m here…love to research, love to offer hope and encouragement to others. ☺️

I know this is all new for you. I just read on another reply that you’re waiting for your bone marrow biopsy results. They can take a good week for all the components of the testing to be completed. This will give your doctor a good overall picture of the health of your bone marrow (the manufacturing site for your blood/immune system) and its ability to produce healthy blood cells.
Waiting is the worst, isn’t it? What do you do to keep your mind occupied during the day?

Hello. I work full time. I am 61 never have i been sick then getting this news through a routine visit for my yearly checkup. Then to hear i have ET. I have been reading a lot. I have been eating better i do exercise at least 5xseek and always have. Did you start out with ET?

Hi Joanne. Nope, I didn’t have any medical issues prior to having AML. I did everything right most of my life by eating super healthy, exercising daily, etc.. I was in my 60s, super healthy, high energy…then boom, within 3 weeks I went from being able to tromp through the woods on snow shoes all day to having about 24 hours left before I was pushing up daisies from the underside. I’d had a complete annual physical less than 6 months before with not one indication of the firestorm that would be coming along months later.
Looking back on my bloodwork from that visit, knowing what I know now about reading results, there wasn’t anything amiss or even remotely out of normal range in any of my tests.
Sometimes, in spite of our best efforts, ‘stuff’ happens and there’s nothing we can do to avoid it. We can just go forward from where we are at any given point. What I did learn is that all my healthy living and walking aided in a faster recovery time without any co-morbidities. So keep up with your lifestyle of working, exercising and eating right. It really does pay off.
Wishing you only good news on your upcoming biopsy results. But don’t fear the worst. ☺️

Good morning, @joannecalandra1962. The last time we chatted, you were waiting for results of your bone marrow biopsy. Were you able to have a consultation with your doctor about the results?

You are hilarious, pushing up daisies from the underside! Love your sense of humor.

At some point in the future, I'd love to explore volunteering for Mayo. I'd like to give back for all the help & support you and the other volunteers have provided.

Hi Wendy! There isn’t a day that goes that isn’t filled with humor in my life. The worst days, tend to bring out the glibbest humor! LOL…ask my oncology nurses! 😅 My husband and daughter are the same way so we can’t look at each other if we’re in a serious setting. At our wedding, our minister had to pause the ceremony until our guests and wedding party could stop laughing…50 years ago! Still laughing! It gets us through the worst of times. ☺️

Giving back to the Connect community is such a rewarding exerience. Whether we’re mentors or members, we’re all part of a big family of support for each other. If you’d like to learn more about becoming a volunteer mentor, here’s the best place to start!
https://connect.mayoclinic.org/blog/about-connect/
I just read you’ve had some more testing done to determine your cause for secondary PV. It would sure help if we came with an owners manual, wouldn’t it? I think we’d all be focused on Troubleshooting section!

So was still on 2 Hydrea 500 pills a day and a phlebotomy every two weeks. All levels are back to normal within two weeks. I was told to stop phlebotomy treatment and take only 1 pill per day. So within days I felt like I had the flu. Headache chills sweats for a couple days. They I got out of bed and my replacement knees from years ago were painful and couldn't walk very well at all. Called doctor they ran many lab test. It showed all my counts were good and test showed no influenza no Covid no viral infections. All is good no limes disease good body was fighting something off but didn't know what so I went three days without being able to walk. Just crawl around and decided I'm on my own to quit the chemo since levels were all good to see if it was a side effect from chemo, I'm on my six day without chemo seems knees are getting better, but if I said a while they stiffen up waiting to see doctor next week have no idea what is going on hoping not to have to go back on chemo and thoughts out there. Thank you.

I have had Polycythemia Vera (PV) for 6 years now. No other symptoms before diagnose other than a sky-high platelet result on a routine blood test. I was started on Hydrea 500mg 2x a time day. Platelets under control. After 5 years I now just take one 500mg Hydrea in the morning. I never had a phlebotomy or a blood marrow test which seems strange as every person who has PV on this site is talking about having a phlebotomy occasionally. I don't have many side effects other than getting verry tired at about 5 pm every day. I plan all of my studying and brain work early in the day. I go to my gymnasium 3x a week and am very involved with my veteran organizations. I just turned 65 and plan to be around for a long time. I wish the best for you. J.

That is what I experience and I’m 75. I make sure I drink a lot of water and include some form of physical exercise every day. I walk all the 9 hole golf courses and yes sometimes I get a bit fatigued but it passes and then I feel normal. Thanx for the positive feedback.

It's been 8 days without Hydrea pill at all and knees are st hard to walk on without holding on to something or pain when walking. My news were perfectly normal and wonderful until I started chemo pill Hydrea twice a day. I see doctor today and hopefully chemo didn't cause damage to my knees. Still very tired also. I was a very vibrant 76er year old till all this happened. It's very disappointing. Thanks for input