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Author Topic: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !  (Read 2284 times)

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Offline weasel

  • Member
  • Posts: 1,681
OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« on: October 03, 2012, 09:31:20 PM »
Polycythemia vera  , I have been told I have this !!!!!!
Source :
Federal University of Paraná, Curitiba, Brazil.
Abstract
It has been suggested that HIV plays a role in the generation of myeloproliferative disorders, including polycythemia vera (PV). Seven cases of polycythemia in HIV patients have been described in the literature, but only 3 of these met criteria for determining a primary origin (vera) of polycythemia. We report a case of PV in a patient infected with HIV. A 45 year old non-smoking homosexual male presented with 15.7 g/dl hemoglobin in 1991, and was diagnosed with HIV. After 7 years, he presented with plethora, splenomegaly, an erythrocyte mass of 71 ml/kg, and an oxygen saturation of 93.9% (the latter three constituting the major criteria for the diagnosis of PV). Erythrocytes 7.35 x 10(6)/ml hemoglobin, 21.4 g/dl, hematocrit 63%, leukocytes 12,400, erythropoietin < 5 nmoll/ml. These values are all compatible with a diagnosis of PV. The CD4 count was 321 cells/mm(3) and HIV viral load was undetectable. The patient was initially treated with zidovudine. He was then treated with didanosine, lamivudine, and saquinavir, but all of them failed to slow the increase in erythrocyte levels. After a diagnosis of PV, he was treated with hydroxyurea and phlebotomy, which normalized the hemogram. CD4 count rose to 474 cells/mm(3) and HIV viral load remained at undetectable levels. The patient remains in stable condition with combination treatment after 1 year. We suggest that this is a case of HIV infection which may have led to the emergence of polycythemia vera. Treatment of the HIV did not prevent the appearance of the myeloproliferative disorder.
" Live and let Live "

Offline emeraldize

  • Member
  • Posts: 3,348
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #1 on: October 03, 2012, 09:40:46 PM »
Hey Weasel,

What has your doctor said to you? What is your prognosis in his/her view?
An abstract doesn't tell me/us what you've been told.

Did you receive this diagnosis today?

Thanks
Em

Offline emeraldize

  • Member
  • Posts: 3,348
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #2 on: October 03, 2012, 09:44:01 PM »
This is a trustworthy source--the NIH. Please read this particularly with regard to treatment, outcome, complications, etc.

See if this information helps. I remain curious what your healthcare provider has told you and what care regimen they outlined for you.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001615/

Offline weasel

  • Member
  • Posts: 1,681
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #3 on: October 03, 2012, 10:34:32 PM »
Hi emeraldize,
                   I have several issues .

Itchiness  , drives me nutz !

Breathing : my   o2 level is 91 !!!!!

 I do not smoke !!!!!    I was a light smoker , quit   over 30 years ago .

I have a few other issues  going on .

 The tumor on my finger  concerns me !!!!!

 My liver is killing me !     
I have acute gout .

     The blood tests   ALARMED HER !    and I must say me too

                                                                         Carl
" Live and let Live "

Offline bocker3

  • Member
  • Posts: 3,386
  • You gotta enjoy life......
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #4 on: October 03, 2012, 10:47:27 PM »
Carl,

sorry you are having to deal with this!

What did you doctor say were next steps?  Generally, PV is easily treatable and phlebotomy should relieve your symptoms.  It doesn't cure it, but like ARVs and HIV it can help you manage the disease.
Like any diagnosis -- it's important to work through the fear and, I find the best thing for that is to talk about your fears.  Ask your doctor questions and learn what you can.
Also -- use us to help get your fears out.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline emeraldize

  • Member
  • Posts: 3,348
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #5 on: October 03, 2012, 11:01:04 PM »
Hi Carl,

While I always appreciate candor from a doc, if all you've walked away with is the residue of her being alarmed, then you need more info from her.

Between the NIH link and what Mike has shared, either with her nurse, or a PA-C, or her directly, you deserve more input.

Being stressed isn't going to help -- but you know that. If you're able to, please call her office tomorrow.

Em

Offline tednlou2

  • Member
  • Posts: 4,887
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #6 on: October 04, 2012, 01:23:10 AM »
I am sorry as well that you're having to deal with this.  I had only basic info about this condition before.  So, is this the result of a gene mutation, as the NIH link says?  The NIH link was informative.  I had very basic knowledge before reading that. 

Wishing you all the best with this.   

Offline weasel

  • Member
  • Posts: 1,681
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #7 on: October 04, 2012, 09:56:45 AM »
This is a trustworthy source--the NIH. Please read this particularly with regard to treatment, outcome, complications, etc.

See if this information helps. I remain curious what your healthcare provider has told you and what care regimen they outlined for you.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001615/

 Thank you  Em ,
                              This is a good write up .  Now I am more confused !   I was told an MRI or CAT SCAN was needed . The main concern was that I have a tumor somewhere .   I do have a tumor on my finger that they do not seem to care about ?
   I will get more information  . 
  Access  to the clinic   is Tuesday and Wednesday  1 pm to 4 pm . So it will be next week before I can get more info.

  After reading this link , I have many questions .  Yes walking away with her ALARMED is unsettling to say the least . 
                                                                           Thanks all ,
                                                                                                 Carl
" Live and let Live "

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,794
  • How am I doing Beren ?
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #8 on: October 04, 2012, 10:33:03 AM »
Hi Carl , I haven't any useful information to offer except to wish you well and send some calming energy your way ... that's worth a little bit isn't it ?


Offline HnyMustard

  • Member
  • Posts: 26
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #9 on: October 04, 2012, 10:41:18 AM »
I was told an MRI or CAT SCAN was needed . The main concern was that I have a tumor somewhere .   I do have a tumor on my finger that they do not seem to care about ?

Hey Carl,

I'm sure they just want to do an MRI or CAT scan to make sure nothing else is going on. Once you have it done, usually the results will come quickly. Try to not worry too much in the meantime.. speculation will drive you crazy. I'm sorry you are going through this. Stay strong.


Offline weasel

  • Member
  • Posts: 1,681
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #10 on: October 04, 2012, 03:04:47 PM »


 Thank you jg1962 & HnyMustard   :-*

    I am a little less concerned today ...  May or not be a good thing ?

   What I have been reading states I need to " Let Blood "   ?  WHAT !

   Then I need to walk and do psychical stuff !

   Time to drag out the bicycle and fluff up the tires .

    I do have  some issues I have been ignoring .  If you can't fix things then why
 start poking around !   
                                           Hugs from Weasel  ;)
" Live and let Live "

Offline WillyWump

  • Member
  • Posts: 7,184
  • your ramblings bore Yamaguchi Kitteh
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #11 on: October 04, 2012, 06:06:13 PM »
Hey Carl, I've never heard of this condition but just wanted you to know I'm thinking about you and sending good thoughts your way. Hang in there buddy

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline karry

  • Member
  • Posts: 271
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #12 on: October 06, 2012, 10:06:20 AM »
Hi Carl
I have little to offer of advice except positive thoughts and energy your way. I hope by your next visit, you will receive more information about the care you need and I hope everything will be okay with you.
Hugs to you
Karry
Take it a day at a time....and be positive about it too!

Offline Theyer

  • Member
  • Posts: 2,514
  • Current ambition. Walk the Dog .
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #13 on: October 07, 2012, 10:11:49 AM »
Oh bollocks Carl I am sorry you are going this, anyway good thoughts to you no

THE BEST OF THE BEST TO YOU.

keep us posted
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #14 on: October 07, 2012, 11:04:07 AM »

  Hey Carl,

     Sorry to hear that you are going through this.  I can understand how stressful this must be.  Is the CAT scan and MRI already scheduled for next week? 

     I'm sending positive vibes your way and including you in my prayers.  I hope you receive some answers to this soon.  Please keep us updated.

   Tommy
I despise the song Love is in the Air, you should too.

Offline Theyer

  • Member
  • Posts: 2,514
  • Current ambition. Walk the Dog .
Re: OMG ! ANY HELP WOULD BE NICE , I AM AFRAID !!!! WTF !
« Reply #15 on: October 07, 2012, 03:21:02 PM »
Hope you had a good day Carl.
michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


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