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Diagnosed polycythemia vera at 26: Any young PV patients out there?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (45)Comment receiving replies
@loribmt Hi, thank you for your notes. We have already ruled out many of those secondary causes. I have been tested for sleep apnea. I do not have any lung concerns. I have never smoked or been around smokers or used drugs of any kind because my family has a history of addiction, I do not even drink. I live in florida which has no high altitudes and all my labs are coming back normal except for my RBC, WBC , Alk Phos , gran#, ANC, reticulotes, and erythropoietin, which is what is leading him to believe it is polycethemia in one form or another. Given my regular labs otherwise and my age there is no reason he suspects my kidneys and liver are not working exactly as they should. I was anorexic as a teen but was given a clean bill of health when I entered adulthood at a normal weight. I do struggle with hypothyroidism and have been in the process of losing weight ( no supplements , no medications just me and a nutritionist working with my thyroid and the gym) but he said this wouldnt have the kind of impact hes seeing, and my levels have been steadily rising for 4 years now ( I put off seeing the hematologist for financial reasons). Right now he does not currently see any cause. He did say that in about 30% of cases of Secondary PV the cause is never known. I have gotten genetic testing for the following , all of which has been negative, JAK2 V617, CALR, MPL and
JAK2 EXONS 12-15 and I am getting more labs done in January before he orders the biopsy. We needed another data point before my insurance would say the biopsy was essential to diagnosis.
Replies to "@loribmt Hi, thank you for your notes. We have already ruled out many of those secondary..."
@chorusgirl500 Thank you for providing more information! No wonder you’re starting to feel like a pin cushion…a feeling I know all too well. But it’s important to get to the bottom of your uptrending RBC.
That’s where the bone marrow biopsy can be of great value. It’s one of those tests that sounds worse than the reality of the procedure. While I did have 13, three were completed with local anesthetic…the other 10 were done while I was blissfully sleeping. The 3 biopsies with anesthetic injection were a little uncomfortable with more of a pressure than pain? Not sure how to describe it. The local anesthetic was effective and quick. I think the anticipation was worse than the event. Anyway, it didn’t take any arm twisting to jump into the sedation when offered for the others.
Considering your reluctance, I hope you are at a larger clinic where sedation is offered.
Like I mentioned earlier, most doctors will also give you a one-time dose of lorazepam which you’d need to take an hour or so before the procedure. So if you want that, ask ahead of time so your doctor can get that prescription in before the procedure date.
The biopsy is actually taken in small of the back, right above or near the large dimples above the butt cheeks. The area may remain tender for a day or so and feel a little bruised.
Wish getting insurance to pay up wasn’t always such a circus act of jumping through hoops to get approval and I hope you have answers soon! I’m sure this is frustrating and troubling for you. Our bodies are complex with no service manual which can make for some challenging puzzles sometimes. But it sounds like you have a great team working with you!
Wishing you and your family a happy holiday season.
@chorusgirl500 Hi me again lol, Is your Hematocrit and hemoglobin high? I didn’t see you mention that. Also if your platelets are normal that’s great news because only some of us get high platelets like myself. I hope you can forget for a few days and enjoy the holidays!
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@chorusgirl500 my EPO is very low, that is why he is going to the bone marrow as the source to figure out what is happening or where to go next diagnostically.