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Polycythemia Vera: Just been diagnosed

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

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@loribmt

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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Replies to "Good morning, @momoffivetoo. I laughed out loud reading your reply this morning. You and I could..."

I definitely know the diagnosis will be up to the doc, but I like to go in with enough information to ask GOOD questions! 😊. I’ve already started a list of questions, and I DID ask my gp to run the gene test. He said it’s outside his knowledge to order the test, so I told him I absolutely respect that. I also told him I appreciate him doing the consult with the oncologist, and getting me the much needed referral!

Anyway, yes, I try to be organized. I am already getting my medical records together with my bloodwork results from the last few years so they can get a clear picture. Calling my insurance company to ask about copays for various services as well. I want to reduce the number of surprises if at all possible.

I’ll post what the doc says in a few weeks after I see her. Thanks again for the communication and support!