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Polycythemia Vera: Just been diagnosed

Posted by atir @atir, Nov 30, 2018

Have been diagnosed with polycythemia Vera recently, Any feed back

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nypara66 | @nypara66 | Apr 19, 2023
In reply to @csgreetings "My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't)..." + (show)
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My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico

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Hello, I'm taking Hydroxyurea and asked this question to the oncologist. Happily he said that there were no dietary restrictions and I can even have alcohol, in moderation. Looking on line, there is much mixed information, so I try to only look on only verified medical sites.

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cindy1209 | @cindy1209 | Apr 19, 2023
In reply to @sammy123 "Cindy1209----- Been busy the last few days- trying to get things organized- We had Chris's 3..." + (show)
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Cindy1209----- Been busy the last few days- trying to get things organized- We had Chris's 3 kids for easter weekend. They are great kids and enjoy their company. My initial appt with the oncologist isnt until next Tuesday (4/18) Seems like it is never going to happen. I have stopped reading about this and will wait for the Dr to tell me what I need to know. I worry way tooo much- How are you doing? Hope all is going well for you and that you are enjoying that baby. What joy the bring us. Thank you for being my sounding board. Sarah

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Hi Sarah,
I know you had an appointment on 4/18. I hope all went well and all your questions were answered. Thinking about you.
Cindy

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new2this | @new2this | Apr 19, 2023
In reply to @csgreetings "Hi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack..." + (show)
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Hi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack and high. I had blood testing last fall and they failed to do a complete blood count (CBC). That's the first indication that showed it and will for most people. I started with a new physician and she ran the full gammit of blood tests on me to get a baseline on my health when I started with her a couple months go. Bam. There it was. Associate yourself with a good medical system. My preious doctor ran tests on me but NOT a CBC. No idea how long I have had this.

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I too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.

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nypara66 | @nypara66 | Apr 20, 2023
In reply to @new2this "I too had a similar issue with my primary care provider. I had already shown signs..." + (show)
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I too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.

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Once you get your numbers down, you’ll be able to go about your normal lifestyle. They’ll do an ultra sound to make sure your spleen and other organs aren’t enlarged. Enlarged spleen isn’t dangerous, just uncomfortable at times. My husbands has been for over 20 years due to liver disease. Blot clots is our biggest worry. If you haven’t had issues with that with your numbers high, that’s a really good sign! Hoping for you they get it under control quickly.

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sammy123 | @sammy123 | Apr 20, 2023
In reply to @cindy1209 "Hi Sarah, I know you had an appointment on 4/18. I hope all went well and..." + (show)
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Hi Sarah,
I know you had an appointment on 4/18. I hope all went well and all your questions were answered. Thinking about you.
Cindy

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Cindy1209-- Met with the Dr 4/18 and still at a loss- waiting for the results of the JAK2 test? Have no appoints until the results come back. It will make a difference on where I go for the blood drawl- Our son is in the hospital for pneumonia-- trying to still get things in order. Thanks for caring- will write more later
Sarah

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csgreetings | @csgreetings | Apr 20, 2023
In reply to @new2this "I too had a similar issue with my primary care provider. I had already shown signs..." + (show)
Profile picture for new2this @new2this

I too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.

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Thanks Darryl. Glad to hear you are on the right track right now. Sometimes I question those who practice medicine and some of these restrictions that are placed on them. I was seeing someone who had a hourly 'quota' from a large national medical company. When I finally got hooked up with a good medical school at a state university things began to roll. I hope that I have end results like you. Thanks for the kind comments. Carol

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seamus1010 | @seamus1010 | Apr 21, 2023

Happy news yesterday. My HCT is now normal, thus no phlebotomy needed. Hydrea seems to be working. Next appointment in 3 months now, on to my vacation to be followed by a bypass in my leg (result of blockage from peripheral artery disease). But, at least PV seems to be under control so there’s that.

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csgreetings | @csgreetings | Apr 21, 2023

Yay and yippee to you! That is for sure my goal. Carol

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nypara66 | @nypara66 | Apr 22, 2023
In reply to @seamus1010 "Happy news yesterday. My HCT is now normal, thus no phlebotomy needed. Hydrea seems to be..." + (show)
Profile picture for seamus1010 @seamus1010

Happy news yesterday. My HCT is now normal, thus no phlebotomy needed. Hydrea seems to be working. Next appointment in 3 months now, on to my vacation to be followed by a bypass in my leg (result of blockage from peripheral artery disease). But, at least PV seems to be under control so there’s that.

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GREAT news!

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seamus1010 | @seamus1010 | Apr 23, 2023

Thank you all for your wishes. I’m blessed with a loving partner, loving family, friends, doctors and medical support.

Off on a well-deserved 3-day cruise from Florida to the Bahamas with partner and friend.

And, yes, … slathered in SP-40 and SPF summer wear.

Keep your spirits up. Like Michelangelo Signorele said (in a different context), …

IT GETS BETTER!

Stephen

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