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I'm a 48 year mother of 2 and just received the diagnosis. To say I'm scared is an understatement. Found out I had the disorder when I went to ER for migraine. Definately feel the fatigue and some other minor symptoms. Had my first bleed yesterday to start bringing my levels down. Hemoglobin was at 21. Any suggestions on how to handle this situation, especially until they get my levels down? I am scheduled to have 5 more bleeds or the next 5 weeks.
Replies to "I'm a 48 year mother of 2 and just received the diagnosis. To say I'm scared..."
Thank you for responding…after about a month of fighting with h the insurance company to approve testing, I did have JAK2 test which did come back positive. My hemoglobin levels are at 21 and hematocrit is 68. I’m concerned about clotting while waiting for levels to come down from phleb draws. Also, I’ve been experiencing what feels like pretty regular palpitations. Not sure what’s causing it, but I did mention it to my hematologist and he didn’t seem to concerned.
Thank you for your kind words…all this support is amazing already. Definitely looking forward to feeling better. We are any active family and I don’t have time to be so tired all the time. Brain fog/dizziness happening way too much.
I can definitely relate to being a little freaked out. I was only 35 when I was diagnosed. I remember my heart sinking when I was told. I was thankful my mother came to that appointment with me because I really don't think I could have driven myself home. I am now 43 and have had 5 different hematologists over the last 8 years. I have had ups and downs with my symptoms and my levels going high. But just know that is manageable and it is possible to still live a normal life. I would like to say that if you need to talk at all to reach out at anytime!
Hello @sap21981. I'd like to add my welcome to Connect along with @loribmt. As Lori mentioned, there is an existing and active discussion on this topic so you will notice I have moved your post here to join others:
- PV and fatigue: https://connect.mayoclinic.org/discussion/pv-and-fatigue/
I'd like to bring in members @yitz @jerrlin @cindy316 @inevanmac @jjdownes01 @albertedward @casevin7 who @loribmt mentioned to you.
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Hello @sap21981 Welcome to Mayo Connect. I’m sure you’re in panic mode right now! Being a young mother of two children and finding out you have a blood disorder fills you with a sense of fear. I’m going to introduce you to other members in our support group who also have been diagnosed with Polycythemia vera. Some have had it for years, others are just at the beginning of their stories. I’ve provided a couple of links below so that you can connect with fellow members.
The first one I listed is PV and Fatigue where you’ll meet members @yitz @jerrlin @cindy316 @inevanmac @jjdownes01 @albertedward @casevin7
https://connect.mayoclinic.org/discussion/pv-and-fatigue/
Other members @pamdg @beebo @splashgirl1961 @wr61 @treeore @dale1k and many others are active in the discussion on “ I am curious: What symptoms did everyone have in the beginning for PV?”
https://connect.mayoclinic.org/discussion/i-am-curious/Have you gone through any genetic testing to find the cause of your PV? Was the JAK2 gene mentioned in the diagnosis?