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Old 03-04-2012, 10:26 AM   #1
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Polycythemia-early symptoms

Hello All. My name is Randy and I am 63 yrs young. My PV experiences started in the mid 90's. I started itching severely in my lower legs (from knees to ankles) for about 45 min. after showering. My face turned red and looked like a sunburn and bloodshot eyes all the time. In 1997 I started getting tightness across my chest and was hospitalized twice thinking I was having a heart attack. Both times was told heart was OK. I felt really tired all the time and wasn't sleeping well. By December 1997 it was all I could do to get through the day. I was getting regular check-ups with my family Dr. But it wasn't until 2000 I told my Dr. about the leg itch and extreme fatigue and he decided to run a full panel of blood tests. I had only been home from his office about 45 minutes and he called and told me something was wrong with my blood results. He gave me the phone number of another doctor and wanted me to call him immediately. I called and got an appointment for the next day.
I was really scared when I found I was going to a cancer center. I talked with the Dr and he told me he needed to take a bone marrow specimen and that it would not hurt;which it didn't. He told me it would take a week to get the results back.So;for the next week I was afraid I was going to die. When the results came back he called me in and explained to me that I was not going to die and that I did not have cancer!
He explained the PV to me and the treatment procedure. He said that it was not a rare condition;but rather an uncommon cronic illness for which currently there is no cure. He said with proper treatment I still have many years ahead of me. So;I'm still going after 17 years. THere have been some bumps along the way and I still suffer extreme fatigue and random itching;but each new day is a blessing to me.
God Bless All;
Randy

Last edited by Pottsey1; 03-04-2012 at 10:34 AM. Reason: spelling errors

 
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Old 03-10-2012, 09:19 AM   #2
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Re: Polycythemia-early symptoms

Randy..your sympotms are so much like mine it is scary. The fears you expressed when you were waiting for a diagnosis are 'bang on'!
Thankfully..you know that you are not alone.
I am so glad you share your thoughts with others and know that by sharing..you are helping others who are also very scared.

I am so glad we found each other

 
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Old 03-10-2012, 10:56 AM   #3
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Re: Polycythemia-early symptoms

Hi Joanne. Thank U so very much. I too am glad we were able to find each other. I was like a zombie while I was waiting on my test results. I remember thinking that it would be Lukemia and I was going to die. As unfortunate as it turned out; I'm happy it wasn't what I was thinking it might be. I w.as very scared on my return visit;but, I finally found out why I had felt so bad for so long and I wasn't going to die and there was treatment for it. I know how terribly scared U were! This stuff silently slips up on U. One day ur feeling fine and then U start to notice little changes like blood shot eyes,a little irritating itch here and there and energy level seems to go down gradually. And yes we do have many,many symptoms in common.
I pray some day they will do an in depth study on PV and find a cure for us!
I am happy we have each other to share and support. I'm in hopes other's that may read our post's and have or think they may have PV will join in and post on this board. There is lot's to be shared here
and give insight to those that may be suffering symptoms that are similar to the ones described in these post's.
Take Care & God Bless Joanne;
Randy

 
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Old 03-10-2012, 11:16 AM   #4
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Re: Polycythemia-early symptoms

I know...now that I look back on some of the symptoms I had been having over the past few years..it all makes sense.
Glad I caught it when I did.


your friend, Joanne

 
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Old 03-10-2012, 12:07 PM   #5
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Re: Polycythemia-early symptoms

Quote:
Originally Posted by Cangal View Post
I know...now that I look back on some of the symptoms I had been having over the past few years..it all makes sense.
Glad I caught it when I did.


I'm glad U did too Joanne! Left untreated this stuff can take a serious toll on U! I almost let my symptoms linger too long. From 1997 until 2000 my life was miserable. Life was a struggle every day. Women are more senseable about taking care of themselves.
If my white cell count increase's I may have to go back on the hydrea. I really don't want to take more drugs;but, I'll do what ever it takes to try and keep this stuff under control.
GB & TC;
Randy

your friend, Joanne

 
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Old 03-11-2012, 04:44 AM   #6
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Re: Polycythemia-early symptoms

I was NOT happy about having to take medication to control my disease..especially so soon after diagnoses.
I was hoping that the phlebotomies alone would be enough to control my levels... for a few years anyways!..but that was not to be.

I am thankful, however, that there was at least another option was available to keep my disease under control..even if it means I am now on meds for the rest of my life.

'half glass full..half glass empty" Its all on how you look at it....right

Joanne

 
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Old 03-11-2012, 01:08 PM   #7
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Re: Polycythemia-early symptoms

Quote:
Originally Posted by Cangal View Post
I was NOT happy about having to take medication to control my disease..especially so soon after diagnoses.
I was hoping that the phlebotomies alone would be enough to control my levels... for a few years anyways!..but that was not to be.

I am thankful, however, that there was at least another option was available to keep my disease under control..even if it means I am now on meds for the rest of my life.

'half glass full..half glass empty" Its all on how you look at it....right

Joanne
I know what ur saying. I wish I didn't have to take meds;but U know Joanne, I would venture to guess 65% of our population is on some kind of med. Like U have said;at least we have a treatment method that is working for us. My thought's about this stuff varies from day to day. Today I feel like everything has been zapped out of me;and it could be this stupid time change thing (EST to DST). But we will make the most of it!
And my glass is always half full! It's a beautiful sunshiny day here and 64 degrees; just wish I had the energy to do something. Trying to drink more today. Don't forget to let me know UR results tomorrow. My prayers will be with U!
TC & GB
R

 
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Old 03-12-2012, 01:31 PM   #8
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Re: Polycythemia-early symptoms

Hope your energy level is better today my friend!

Was late getting my blood results because the lab was working short today..but..it was worth the wait!
My hematocrit is still below 45 so no phebotomy!!!!
My platelets were up a bit again..will have to review this at my next appointment..may need to either increase the dose or add another med to better control them.
Will just have to see.
Going to have a glass of wine to celebrate...and some roast beef


GB & TC
Joanne

 
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Old 03-12-2012, 04:07 PM   #9
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Re: Polycythemia-early symptoms

Quote:
Originally Posted by Cangal View Post
Hope your energy level is better today my friend!

Was late getting my blood results because the lab was working short today..but..it was worth the wait!
My hematocrit is still below 45 so no phebotomy!!!!
My platelets were up a bit again..will have to review this at my next appointment..may need to either increase the dose or add another med to better control them.
Will just have to see.
Going to have a glass of wine to celebrate...and some roast beef


GB & TC
Joanne

Hi Joanne! I wish I could find something to boost my energy level. I drink a protein drink called (Boost) every morning;doesn't seem to do much.Yes the Dr. may have to adjust UR meds a bit.I remember my Dr. adjusted mine several times in the beginning and finally got it right. I'm going to ask him about increasing my anagrilide a little more to see if it will help the itch.
I was looking on the internet last night about anagrilide and it said it was used to control the production of white blood cells.
Last visit the white's were elevated.
Any way Joanne;I'm so verry HAPPY 4 UR lab results today!!!
GB & TC;
Randy

Last edited by Pottsey1; 03-12-2012 at 04:10 PM.

 
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