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Message
Polycythemia - anyone dealing with it with yourself or family
Posted on 10/5/18 at 7:56 am
Posted on 10/5/18 at 7:56 am
Polycythemia -rare blood cancer but doesn't seem too scary. Is this serious or not?
14
Posted on 10/5/18 at 7:56 am to gingerkittie
quote:
Is this serious or not?
I'm going to go with no.
Posted on 10/5/18 at 8:06 am to gingerkittie
My polycythemia turned into full blown AIDS.
Posted on 10/5/18 at 8:08 am to gingerkittie
quote:
rare blood cancer
Sounds scary to me.
Posted on 10/5/18 at 8:19 am to Hogwarts
quote:
my polycythemia turned into aids
Yeah, my doc said that could happen if I frick monkeys but luckily I'm not a monkey fricker.
Posted on 10/5/18 at 8:20 am to gingerkittie
Depends on the cause
Posted on 10/5/18 at 8:21 am to gingerkittie
quote:
rare blood cancer
Well, I wouldn't make it a surprise announcement at a birthday party.
Posted on 10/5/18 at 8:23 am to gingerkittie
Aren't most blood cancers basically curable now with immunotherapy?
Posted on 10/5/18 at 8:25 am to gingerkittie
quote:
are blood cancer
quote:
s this serious or not?
Nah. Rub some dirt on it.
Why don’t you ask an oncologist?
Posted on 10/5/18 at 8:26 am to Jizzy08
It's not the type caused by high altitude. It is abnormally blood tests. It can be treated initially by making me donate blood to thin my blood but it can also turn into aggressive leukemia.
Excuse any typos, am typing on a kindle
Excuse any typos, am typing on a kindle
Posted on 10/5/18 at 8:27 am to gingerkittie
quote:
rare blood cancer
quote:
Is this serious or not?
Anything involving cancer is serious in my book. Hope it goes good for you and your family.
Posted on 10/5/18 at 8:31 am to DeafJam73
Doing testing first. More blood tests for the poly, a spine and head MRI to define the spinal lesions.
Posted on 10/5/18 at 8:38 am to gingerkittie
Not trying sound like a dick but..it sounds like you’re obviously worried about it but I don’t think this is the place to get the kind of support it sounds like you need. You need to have a frank conversation with your physicians. If it’s emotional support you need, the OT is not typically the place you will find it.
Posted on 10/5/18 at 8:49 am to IAmNERD
Thank you Nerd. I know people may think i am trolling but I am not. I'm ok with whatever it is but the thought of my son being hurt by this is the worst.
Posted on 10/5/18 at 8:52 am to gingerkittie
My MIL has polycythemia Vera. Her body produces too much blood and it makes her achy and tired. She will go to the doc and he will drain a couple of pints. Medication is helping in that she does not have to go as often as she did at first. It can lead to Leukemia. She is 81 and is still moving around pretty good. 
Posted on 10/5/18 at 8:52 am to gingerkittie
I don’t know, back when I use to smoke I had thick blood. Doctor mentioned polycythemia to me, about it being a possibility. He told me to be careful on iron intake, drink more water, and of course quit smoking. I quit smoking and drink more water, I don’t pay any attention to my iron intake. But went back a month later and then again about 2 months later and hematocrit and hemoglobin count had lowered...... or something like that. Doctor told me good job so that just means I’ll get hit by a bus while checking the mail at some point.
Posted on 10/5/18 at 9:00 am to gingerkittie
So sorry gingerkittie. Hoping it is well controlled.
Posted on 10/5/18 at 9:03 am to Yewkindewit
Thank you, yew. I needed some personal insights into it and not just the Drs medical jargon.
Posted on 10/5/18 at 9:10 am to windshieldman
They did mention smoking could contribute. I have a history of seizures so I do smoke some 
The docs told me just wait for the specialists to explain it all to me so I am in limbo.
Is my blood good to be used after donation of is it rejected?
The docs told me just wait for the specialists to explain it all to me so I am in limbo.
Is my blood good to be used after donation of is it rejected?
Posted on 10/5/18 at 9:17 am to gingerkittie
quote:
Is my blood good to be used after donation of is it rejected?
I have no idea, I’m sure they could tell you though
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