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Old 01-16-2003, 06:58 AM   #1
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shona HB User
Exclamation polycythaemia (too many red blood cells)

I am a 37 year old female, recently diagnosed with a blood disorder (polycythaemia - too many red blood cells).

It is very rare, (how lucky am I)! and am finding it difficult to contact other sufferers.

If you have any experience of this plse reply. Thanks

shona

 
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Old 02-01-2003, 01:49 PM   #2
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Cedric,

Thanks for your reply, I have just had a blood count test, which I believe should have been done earlier. I was diagnosed with polycythaemia in November, I was devastated, after reading literature on the internet.

The specialist arranged a blood count test after several normal blood tests and other tests.

The blood count revealed that I actually have pseudopolycythaemia !! I am still trying to work out what I actually have. She told me to stop smoking, and discharged me. I am now worried that in years to come I could develop real polycythaemia and not know.

My main symptom was facial flushing, this is why I went to the doctor's in the first place. This I believe is a common symptom, however, the specialist told me this was coincidental, and to visit a dermatologist. If you have any views/opinions on flushing or pseudopolycythaemia, I would be really grateful. Thanks again.

Shona

 
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Old 03-24-2003, 11:40 PM   #3
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Polycythemia occurs in about 2 people per 100,000.

I have had it for about 5 years.

If not treated it can cause death, stroke, brain & muscle damage.

Get it stablized & bleed out pint every couple of months under a doctors care.

G

 
Old 03-29-2003, 12:55 PM   #4
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I have had polycythemia (what is the correct spelling anyhow?) for a couple of years and had been phlebotomized every other month during the first year. Then I quit smoking and it made a world of difference. Now I only have to be tested once a year. It is under control and I'm happy.
J

 
Old 05-24-2003, 10:34 AM   #5
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Yes, Yes, Yes.
I was diagnosed with Polycythemia 2 years ago. I get phleb'ed every few weeks if my CRT is too high (approaching 50)---distressing when it's done in the chemo room.
They still can't tell if it's 'Primary' or 'Secondary' Polycy.
What has helped to keep my crit down(lately around 43-44) is aerobic exercise, ALOT of water (about a half gallon or more a day) green juices, nettles and large doses of VitC.

SMOKING must be stopped immediately. This much I know.
Yes, there can be complications. Try to do things that are affirming rather than do what I did...search out every horrible possibility and worse case outcome from Net Med sources. I just end up terrifying myself, which is not good and causes needless anxiety. How do I benefit from that?!
Get educated, and take healthy action.

Breathing and relaxation exercises (Yoga type stuff) helps alot to regulate Oxygen. I've found it helpful to help with anxiety as well.
Bon chance. My heart goes out to you....I'm not pleased with having this. I have other stuff going on as well. My body is telling me "TAKE care of me..pleeease."
The choice I need to make is, am I willing to listen to it and respect the reality that's presented.
Yes, it does indeed suck.
What can <I> do to make myself comfortable?
What can I eliminate in my life that's aggrovating things?
How can I optimize my health?
Can I commit, one day at a time to optimizing in a gentle way?
Being kind to myself is the most important thing. This doesn't come easily...I am frightened of the 'possibilities'....but I try to stay in the NOW moment which is all there really is!
Bob

 
Old 05-27-2003, 03:31 PM   #6
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Hi all, can someone tell me what are the abnormal blood tests that would indicate this? I had a high red blood cell count (only one point over) and a high sed rate (38) in a range of 0-20. I was wondering if this could mean something serious. My white blood cell count was ok, and pretty much everything else, but just the RBC was 5.32 in a range of 3.82-5.30. Just wondering if anyone could shed any light on this. Thanks so much for any help!! Val

 
Old 09-23-2006, 11:11 AM   #7
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Re: polycythaemia (too many red blood cells)

I am sooo glad to talk to people with this disease, it is very rare, i was diagnosed with this at age 15 and i am now 31. had i never decided to play sports i probably would have never found out. i was told that there is always someone else in your family that would have had this disease and that it skips generations. i later found out that my great uncle had it.

i am a little scared because i just found out this morning i am pregnant, my fourth pregancy and need heprin (a blood thinner) and just praying that i carry this one to full term i have no children and would like some or at last one. I have had 3 miscarriages because of polycythemia my hematicrit is already at the level of a pregnant woman and when i get pregnant it gets even higher, releasing very little or ceasing any blood flow to the embryo.

has anyone with this disease had any children or pregnant, if so, please tell me if the heprin (or a blod thinner) helped.
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Old 09-23-2006, 11:12 AM   #8
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MONIBEN HB User
Re: polycythaemia (too many red blood cells)

Quote:
Originally Posted by MONIBEN
I am sooo glad to talk to people with this disease, it is very rare, i was diagnosed with this at age 15 and i am now 31. had i never decided to play sports i probably would have never found out. i was told that there is always someone else in your family that would have had this disease and that it skips generations. i later found out that my great uncle had it.

i am a little scared because i just found out this morning i am pregnant, my fourth pregancy and need heprin (a blood thinner) and just praying that i carry this one to full term i have no children and would like some or at last one. I have had 3 miscarriages because of polycythemia my hematicrit is already at the level of a pregnant woman and when i get pregnant it gets even higher, releasing very little or ceasing any blood flow to the embryo.

has anyone with this disease had any children or pregnant, if so, please tell me if the heprin (or a blod thinner) helped.
[/FONT]

 
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