I am soo worried about this disorder, and want to get some insite from others regarding their result with different things they have done,
I need to have an upper and lowere g-I done and have concerns about going through with it. also read that fullness after eating small meals is a symptom and that losing wt should be important. i have female age 63 and dont smoke, drink and until now have had a very healty lifestyle.
hi: my name is Gerald (jerry), i had an upperr and lower gi done recently. No big deal. Hardest part for me was drinking the liquid to clean out my system. Relax, it is no problem . Take care.
Hey, thanks for the response, as you can see i am not on the computer a whole lot. Have scheduled my proceedure, do you have a problem with itching skin? and how long have you had PV, ? do you have the blood withdrawn? how do you feel?
thanks judy
gerald polycythemia-vera-cpt4672@lists.careplace.com wrote:
actually,
my father has it and yes he itches a lot. He feels just OK. you can get
lots of info on mpd.org
On Nov 28, 2007 5:27 PM, judy123 <
polycythemia-vera-cpt4672@lists.careplace.com> wrote:
I have had blood withdraw for over a year fiirst it was every teo weeks then four now the span is six weeks. How about your frequency?
Sent from my BlackBerry Wireless Device
-----Original Message-----
From: judy123 polycythemia-vera-cpt4672@lists.careplace.com
To: Blaum, Steven (CMS/NC)
Sent: Wed Nov 28 17:27:30 2007
Subject: Re: [polycythemia-vera] holistic remedies
I was diagnosed with Polycythemia 6 months ago, my first symtom was itching after a shower, I thought I had an alergy to soap. My cousin was diagnosed at the age of 17, she is a female, rare huh. Well only her red cells are up. As for me, all three are up, you could say that mine is more aggressive. This disease has to be predisposed as genetic even though no one really knows how one gets it. I am 46 years of age, very healthy and I take 2 hydrea’s per day, my red blood is churning out like crazy right now, although my platelets are down to 290,000 and my white count is down to 18.2 K/ul. I do not have blood drawn at this time. I was told that it is somewhat good that the Jak2 mutation shows up because in the future it might be more favorable to isolate this gene, if not cure it. I have seen crazy counts in this forum as well as others, my doctor, who is very good, does not seem to worried about me at this time. I will tell you that about 7 years ago my platelet count was up to 670,000 for whatever reason and I went to this same blood doctor, he was not worried about doing a bone marrow to see why it was up, but did tell my regular doctor that this patient was one to watch in the future and sure as heck 7 years later my white cells jump to 27,000 count and my red blood hematocrit went to 52. I will also point out that my grandfather had thick blood, but back then not much knowledge was available, he would simply have a pint drawn when he got to feeling light headed. In my opinion, this desease has to be genetic, what sets it off in ones lifetime, thats the question mark?
Are you concerned about reaching the spent phase?
-----Original Message-----
From: OMG [mailto:polycythemia-vera-cpt4672@lists.careplace.com]
Sent: Thursday, November 29, 2007 12:48 PM
To: Blaum, Steven (CMS/NC)
Subject: Re: [polycythemia-vera] holistic remedies
I went from once a month to every 2 and now to 4, however on the last withdrawal I became very weak and it took me a good 3 weeks to recover, I am to see my Dr. on the 6th and will see what is going on. I will let you know. je
Saxon polycythemia-vera-cpt4672@lists.careplace.com wrote:
Hopefully its a one of a kind happening. I had my phlebotomy yesterday and the technician indicated he had two patients pass out on him , one who has had phlebotomies for five years, a first for him. Of course after he told me this I felt weaker and more lightheaded than usual
Different question; after a phlebotomy do you feel you can breathe better? I do and was curious if there is a connection and if others have the same experience. My doc said he would monitor it
Sent from my BlackBerry Wireless Device
-----Original Message-----
From: judy123 polycythemia-vera-cpt4672@lists.careplace.com
To: Blaum, Steven (CMS/NC)
Sent: Tue Dec 04 18:29:04 2007
Subject: Re: [polycythemia-vera] holistic remedies
I will be seeing my Dr. thurs. when i had my very first pholo. i felt wonderful and yes could breath great, however thereafter i would get faint, but they take my chair and put me way back with my feet elevated and with a iv solution and then do the draw. and normally i feel great but this last i did not, i think it was because i didn’t drink enough water when i came home and had a hard time breathing, my sister who is a nurse, told me that oxygen travels through the blood, (which makes sense) and when they take out to drop my levels it also drops my oxygen, took me 2-3 weeks to get my strength, but i feeling great today. I have started drinking this product my daughter send me and have been on it a month, i drink 4 ozs a day and i am anxious to see what happens with my blood test thurs. will let you know. my range for my draw is not over 45 on the hct.
Have a great day. thanks judy
Saxon polycythemia-vera-cpt4672@lists.careplace.com wrote:
ps …what is the spent phase??? don/t tell me if it is negative.
Saxon polycythemia-vera-cpt4672@lists.careplace.com wrote:
pls let me know if any natural remedies will help
On Dec 5, 2007 1:56 PM, judy123 <
polycythemia-vera-cpt4672@lists.careplace.com> wrote:
Judy, My name is Rob…
what exactly does “having a GI” mean and why do they do it ?? I have PV and no one’s ever stuck anything in my gut yet…
As far as your phlebotomies and fainting: when i first got blood drawn I almost passed out, but I didn’t eat any protein before I went in. Now I make sure I have eaten well that day because your blood sugar drops quick when they take a pint of blood…
Hope it helps 
Rob