Polycythemia Vera

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Bob Gleason

Has anyone heard of this? It is a blood disorder that usually results in an increase in all blood cells, although the redcells are most severely affected. (An abnormal excessive production of red blood cells) The increase in circulating red blood cells makes the blood more viscous, impeding its usual rapid flow through the blood vessels and often leading to strokes or tissue and organ damage.

Just found out after yesteday's visit to a hematologist that I have all the symptoms of polycythemia. (I had thought that I was having TIAs)

More testing ahead to complete the diagnosis and evaluation for treatment which could range from phlebotomy, radioactive phosphorus or chemotherapy.

Having abdominal CT Scan to determine any abnormalities of my liver, kidneys, spleen, etc.

Anyone have or know of this or am I in this boat alone?
 
Polycythemia

Polycythemia

Bob ... I too am familiar with Polycythemia Vera. My hemoglobin and hematocrit have always been high (in regular blood tests). My pcp sent me to an oncologist to have further testing and possible bone marrow test.

As it turned out, I have something called "pseudo" polycythemia vera ... which is a look-alike condition, but not the real thing. So they did some routine tests (not bone marrow) and that was it. No meds or anything.

It's been 7-8 years since this all came up so I don't remember all the details; however, I do recall that they suggested giving blood regularly to counter the viscosity of the blood as this condition does effect how "thick" the blood is and how "smoothly" it flows.

Good Luck with your testing on this .. and keep us posted.
 
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Bob, I am so sorry to hear of this. You have spoken of TIAs from time to time, haven't you? May I suggest you check into about.com (heart disease/cardiology) and ask Dr Rich about it. He's so informative about all heart conditions. He's an electrophysiologist cardiologist. Please keep us informed. God bless
 
Polycythemia

Polycythemia

Bob, I am sorry to hear that you are having problems. You are the one that is cheering everyone else on and I didn't realize that you wre having TIA's.
Does this have anything to do with coumadin or does coumadin effect it? Does anyone know?
Wish I could help but have never heard of it.
Good luck.
 
Bob's Boat

Bob's Boat

To answer your question above Bob, youare definately NOT in this or any other boat alone. We will gladly keep you company for we are one.
 
Bob - Joining with everyone else here to wish you well at this worrying time for you. I do hope everything turns out to be better than you fear. All the best for your test results.
 
Hey Bob -

Well I've never heard of that one but whatever it is I'm sure you will KICK ITS BUTT.
Keep us posted on test results and try to stay positive.

Tammy
 
Bob, I have never heard of this disease, so can't offer any insight. However, I will be praying for you. If you have it, which I hope you don't, hope the cure is as easy as phlebotomy. Giving blood is a fairly easy procedure, too bad they can't use your blood for anyone else!
 
Polycythemia Vera

Bob, my sister-in-law has had this for about 8 years. She has been able to control it with them taking blood. At first it was needed about every three months, but her last time was 9 months and now she is going on 8 again and still feeling well.

I understand that different people are affected different ways by this disease. Once Kathy found out what was bothering her and they started taking blood, she has been doing good until near the time she needs to give blood again. Then she feels sluggish with a weighty feeling in her chest. She will get winded also.

Good luck and keep us posted.
 
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