polycythaemia (too many red blood cells) - Blood and Blood Vessel Message Board

shona · 01-16-2003, 06:58 AM

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

shona · 02-01-2003, 01:49 PM

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

Gine2D · 03-24-2003, 11:40 PM

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

janetm · 03-29-2003, 12:55 PM

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

bobgure · 05-24-2003, 10:34 AM

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