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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (427)
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@momoffivetoo

Thank you so much for the reply! Yes, I definitely like to research. I look at published medical papers a lot, and I do feel pretty confident this is what is going on. I’ve been considering calling my gp to ask if they can just order the test for the gene mutation so it’s ready to go! 🤣

My appointment isn’t until April 30, so I have over three weeks to go. I’m on a waiting list for a sooner appointment, but I’m not expecting to get in sooner.

This all has my mind racing because I deal with so many other things I’ve just always attributed to lupus. Now I’m wondering if PV has been the issue instead. I guess we will see!

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Lori, Volunteer Mentor | @loribmt | 5 days ago

Good morning, @momoffivetoo. I laughed out loud reading your reply this morning. You and I could be friends…I often have my head stuck in published medical papers, books, journals, too. Never know what information we might need down the road, right?😂 We might be great at trivia parties, and have friends asking us for advice, but we still need to let the diagnosing up to our doctors. (With our help! 😂)

Actually, having that sense of curiosity and level of undertanding can really cement the patient/doctor relationship. By being engaged in the conversation rather than sitting there non reactive can make such a difference in the rapport. The conversations with my hemo/ocol and my transplant doctor/team are more like we’re colleagues. My GP, not so much, he gets prickly when it sounds like I know what I’m talking about. LOL He gets one more chance and then I’m moving on. Anyway, I think learning as much as you can about a diagnosis is golden. Your hematologist visit will be informative.
Don’t hesitate to ask your questions. Being a mom of five I suspect your organizational skills are top notch. (I’m envious, being mother of 1 with epic failure to inherit my mom’s organized lifestyle). Anyway, toss in a notebook with your questions to help keep from veering off topic. We get precious little time with our doctors so make the minutes count.
I’m like the nosy aunt, so let me know how your appt goes, ok?

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