- My Forums
- Tiger Rant
- LSU Recruiting
- SEC Rant
- Saints Talk
- Pelicans Talk
- More Sports Board
- Fantasy Sports
- Golf Board
- Soccer Board
- O-T Lounge
- Tech Board
- Home/Garden Board
- Outdoor Board
- Health/Fitness Board
- Movie/TV Board
- Book Board
- Music Board
- Political Talk
- Money Talk
- Fark Board
- Gaming Board
- Travel Board
- Food/Drink Board
- Ticket Exchange
- TD Help Board
Customize My Forums- View All Forums
- Show Left Links
- Topic Sort Options
- Trending Topics
- Recent Topics
- Active Topics
Started By
Message
re: Polycythemia - anyone dealing with it with yourself or family
Posted on 10/5/18 at 9:22 am to colorchangintiger
Posted on 10/5/18 at 9:22 am to colorchangintiger
Serious reply- my dad's polycythemia vera turned into mylofibrosis (apparently fairly common) about 10 years after being diagnosed w polycythemia, basically scarring his bone marrow to the point the bone marrow stops producing adequate amounts of red blood cells/hemoglobin. Eventually your body will crash unless you get periodic blood transfusions which produce their own issues (possible rejection, disease, wrong blood type, etc) while letting your body function with new blood.
The worst part is theres no cure, so as your hemoglobin trends down your blood transfusion frequency increases, eventually becoming unmanageable. Its essentially a terminal illness at that point.
Eta: it should be noted obviously not all polycythemia turns into mylofibrosis.
The worst part is theres no cure, so as your hemoglobin trends down your blood transfusion frequency increases, eventually becoming unmanageable. Its essentially a terminal illness at that point.
Eta: it should be noted obviously not all polycythemia turns into mylofibrosis.
This post was edited on 10/5/18 at 9:25 am
2
Posted on 10/5/18 at 9:33 am to Jizzy08
Jizzy, has i don't think you are being adick. I just wanted more personal anecdotal info about it and such and how it is to live with.
Posted on 10/5/18 at 9:49 am to NYNolaguy1
Thank you Nolaguy, The Drs didn't say any of this. He just said polycythemia and gave me blood and MRI lab orders. I just wanted to here about others with it and how it affects life
Posted on 10/5/18 at 9:51 am to gingerkittie
In my experience as a clinician, polycythemia is common for patients who chronically have low levels of oxygen in their blood. So the body produces more oxygen carrying red blood cells. The more red blood cells, the better O2 carrying capacity to help oxygentate the body. Downside is the blood is thicker.
This post was edited on 10/5/18 at 9:52 am
Posted on 10/5/18 at 9:58 am to GreasyCracklin
Cracklin that is something that I noticed. My blood oxygen rate is in the high 90s so that seems good.
Posted on 10/5/18 at 10:01 am to NYNolaguy1
Thank you Nolaguy, your summary is exactly what I needed to know.I know it's different for everyone but it helps me to see how it affects us others in real life. 
Posted on 10/5/18 at 10:19 am to gingerkittie
My sister has had it for 20 or so years. She takes a pill everyday to manage it.
Posted on 10/5/18 at 11:17 am to eitek1
Thanks for that. It seems to be treatable and not too bad unless it progresses. I finally have insurance and am in a special medical needs programs because of this the ms, seizures, etc.
But the good news is that one of these things will likely take me out before I get Alzheimer's that is my genetic destiny. A big FU to Alzheimer's
But the good news is that one of these things will likely take me out before I get Alzheimer's that is my genetic destiny. A big FU to Alzheimer's
Posted on 10/5/18 at 11:36 am to gingerkittie
I’m using a medicine off label that treats polycythemia vera. As with any blood cancer, it’s always concerning. It can predispose you to other blood cancers of the bone marrow too.
Posted on 10/5/18 at 11:50 am to Areddishfish
Thanks for the reply. I needed people like you to tell me how it is in real life. Drs throw so many statistics and technical terms and talk so fast.
something with this is clearly causing cognitive issues with me so conversations like these are most helpful.
(Polycythemia and MS both can cause cognitive issues)
something with this is clearly causing cognitive issues with me so conversations like these are most helpful.
(Polycythemia and MS both can cause cognitive issues)
Posted on 10/5/18 at 1:18 pm to gingerkittie
You are obviously a "glass half full" kind of person. Good luck to you. Your positive attitude will go a long way.
Posted on 10/5/18 at 1:25 pm to gingerkittie
quote:
Polycythemia
Oh yeah, Polycythemia Jackson III. Played linebacker for USC.
Posted on 10/5/18 at 1:46 pm to fr33manator
dammit, now when the doc says polycythemia I'm going to be envisioning polycythemia jackson, all geared up and ready for the big game.
Page 2 of 2
Popular
Back to top
Follow TigerDroppings for LSU Football News