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Polycythemia Vera: Dealing with excessive red blood cell production

Started by Amy Edwards60 · · 👁 4 views · 3 replies

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Participants Amy Edwards60vividsailor7
Amy Edwards60 Amy Edwards60 NewcomerOP
2 messages
joined Aug 2012
#1 ·
I’m trying to wrap my head around Polycythemia Vera. Someone really close to me has been battling this for a while now—basically, their red blood cell count was way too high. But now, according to her doctor, she’s moved into a second phase where the red blood cells have actually normalized, and now her blood is almost too thin... I'm not sure if this is some kind of end stage or what. If anyone here knows anything about this condition or has dealt with it before, please reach out...
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#2 ·
Amy Edwards60 said:I'm looking for some information regarding Polycythemia Vera. Someone very close to me has been battling this disease for quite a while now, which basically means they have an abnormally high red blood cell count. However, her doctor just informed us she's entered a second phase—apparently, her red blood cell levels have actually normalized, and now her blood is almost too thin. I’m spiraling a bit here. Is this considered a terminal stage? If anyone here understands this condition or has dealt with it before, please reach out...

Look, this isn't a guessing game at a local bar. We can't just throw theories around blindly. If you want actual answers, you need to provide concrete data—age, specific lab results, complete blood counts, TSH levels, the works. Give us something real to work with.
Amy Edwards60 Amy Edwards60 NewcomerOP
2 messages
joined Aug 2012
#3 ·
So, I’m asking about my grandma. She’s 79, and she was diagnosed with this condition about 20 years ago. Her current meds include Litalir, Martefarin, and for her heart, she’s on Lanitop, Korderon, and Fursemid. The last time she was in the hospital was back on July 9th of this year; they discharged her with a diagnosis of Polycythemia vera (D.45). The notes say: liver: palpable rubor, abdomen: soft, slight tenderness upon palpation under the right costal margin, spleen not palpable, and noticeable edema in the lower legs. Blood pressure was 80/60. Here are her latest blood work results: RBC - 3.07, HG - 106, MCV - 102.6, MCH - 34.5, MCHC - 337, RDW-CV - 18.7, WBC - 22.5, Platelets - 392, Hct - 0.51, MCV ratio - 1.49, INR - 1.47.
vividsailor7 vividsailor7 Active Member
217 messages
joined Sep 2011
#4 ·
Amy Edwards60 said:I'm asking about my grandmother. She's 79, and she was diagnosed with her condition 20 years ago. Her current regimen includes Litalir, Martefarin, and for her heart, she takes Lanitop, Korderon, and Fursemid. Her last hospital stay was on July 9th of this year. She was discharged with a diagnosis of Polycythemia Vera (D45). The notes mention: liver is palpable/red, abdomen is soft but there's slight tenderness upon palpation under the right costal margin, spleen isn't palpable, and there's noticeable edema in the lower legs. Blood pressure was 80/60. Her latest labs: RBC 3.07, HGB 106, MCV 102.6, MCH 34.5, MCHC 337, RDW-CV 18.7, WBC 22.5, Platelets 392, Hematocrit 0.51, PCV 1.49, INR 1.47.

Based on the clinical picture, it looks like she's dealing with AFib.
They really need to double-check her kidney function—especially given the Fursemid and methyl digoxin—and run a full panel on electrolytes (K, Na, Mg, Ca) because of the furosemide. Plus, they should check the blood concentration levels for Lantop. And an EKG is non-negotiable.
Looking at those specific lab values—creatinine, urea, potassium, hematocrit, and INR—all the medication dosages need to be carefully titrated.

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