Chronic Obstructive Pulmonary Disease (COPD) Expert Forum
recent diagnoses
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recent diagnoses

Hi I was just diagnosed with polycythemia vera , I have had lack of oxegen for over 4 years and MY hemoglobin level is over 40 for yrs at least . Any way back to questions MY skin looks like its 70 I have very loose skin under arms embarrassing bad also MY legs from thighs to knees PROBABLY worst than all the a striped snake , within a week I Seen them go from 7 inches UP from knee now.they are so gross and embarrassing. Could some one tell me what GOING on I am 110 pre been same weight over 6 years I am only 54 any answers I would be so greatfull . I  am so embarrssed please help me I also do have other health problems but I'm just so depressed and embarrssed. I am to vain to looks like this. Thank You for any Advice anyone can give me I'm desperate.
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What you describe below is mostly consistent with the diagnosis of Polycythemia Vera (PV) but the skin changes are not typical.  PV is associated with other blood disorders with which it has features in common, the others more likely to be associated with skin changes.  P.V.  is generally not associated with low oxygen levels, at least not in the early stages.  If the low oxygen levels were noted prior to the diagnosis of PV it would be most important to determine the cause of impaired oxygenation.

Given that what you describe is atypical for PV, the best advice I can give is that you and your doctor request a second opinion, consultation with a Hematology specialist with experience and expertise in the various ways these conditions are related and may interact.  In other words, what you have experienced may not be straightforward PV and may require treatment other than that typically prescribed for PV.  

Do not be reluctant to ask for additional medical assistance.  Your health is too important for you to not seek the best physician help available and this may require consultation at a clinic such as the Mayo Clinic or the nearest University Medical Center.

Good luck
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MY hemoglobin is 20 MY BLOOD is very thick I was going to roswell cancer institute for over year . They did the bone marrow. So I switched to a private cancer hemoglobin doctor only problem is now I have no where to vent my blood. I know something is very wrong I now have high blood pressure . GERD. Oxegen level goes from 91 - 85 sometimes . They told me to worry about getting blood clots and MY blood is to thick to go thru my small organs . But doesn't seem like any one working fast enough , I know I have been out of breath for years , wonder how long I can go with my blood so thick , thank you .
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My doctor said labs showed high red blood cell counts. He tried me with sleep apnea machine. Set me up for nuclear testing which is unavailable. Sent me to a cancer / blood doctor who said my blood tests were high but in normal range. In January I had pneomonia. The hospital said my red and white cells were normal the entire stay. The doctor t here also felt it was the lab that ran the test. My other doctor said PV and talked about blood letting. Yet they said in the hospital I'm five pints away from blood letting! I changed to a new doctor. He sent me for a blood test. WBC were high.. He said go see the blood/ cancer doctor I'd already seen who wasn't really concerned because I was in the normal range. Actually He didnt say to go, but I read it on the blood test results. This month I got pneomonia again WBC were high but I had a fever of 104. They got my blood back in the normal range. I asked about PV. They said and what if you do have it? Like so what? I'm no longer wheezing, the only problem is my veins are so bruised maybe from the baby aspirin. I'm now a hard stick. I guess my veins are hiding. I'm tired of being told different things everywhere I go. What is the point. I just get stressed. I tend to believe the blood/ cancer doctor. Who never gave me any further instructions. Could it be labs test differently? Should I keep looking for health problems? It was the sleep apnea machine that pulled pneomonia into my lungs in January. Now I'm afraid of it. I'm a 67 year old female who's never smoked. I'm around kids a lot at work. I'm thinking retirement might stop pneomonia. I'd had the  pneomonia shot and the flu shot. Any suggestions I'm at my wits end. Thank you!
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