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Author Topic: he never tells me !  (Read 3114 times)

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Offline jay195

  • Member
  • Posts: 67
he never tells me !
« on: September 03, 2009, 05:54:06 AM »
Hi ! I wonder if someone could help me out please.Whenever I go for my lab results the doctor never maentions the %. I have been hiv+ for just over a year and currently I am taking truvada, norvir and reyataz.CDs 750 and VL undetectable with no side effects and my general health is good . How important is it to kinow your % ? I shall make a point of asking him about this but in the meantime I would be grateful if you guys could pass on some information. Thanks guys and gals.



                                                      kisses Jay

Offline positivmat

  • Member
  • Posts: 222
Re: he never tells me !
« Reply #1 on: September 03, 2009, 06:36:05 AM »
Hey I always ask for mine too. I get it, but my doc is not interested in % at all. He's been treating HIV patients since early 80's too. He tells me not to worry about %. Mine went from 13 to 27 after 1 month on atripla.

Offline bocker3

  • Member
  • Posts: 3,459
  • You gotta enjoy life......
Re: he never tells me !
« Reply #2 on: September 03, 2009, 07:44:32 AM »
My doc does tell me, but I still always ask for a copy of my lab results for my own files.  You can do the same.

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 GNYC09

  • Member
  • Posts: 702
Re: he never tells me !
« Reply #3 on: September 03, 2009, 08:17:13 AM »
My doc also doesn't use %.  I get a copy of my labs at every visit (next one is in a few hours) and calculate the % myself.  Jay195, maybe you can call your doctor's office for a copy of your last few labs?

Offline confidentIwillbeOK

  • Member
  • Posts: 131
Re: he never tells me !
« Reply #4 on: September 03, 2009, 08:23:09 AM »
My doc does tell me, but I still always ask for a copy of my lab results for my own files.  You can do the same.

Very good idea.  I am putting everything in a 3 ring binder.  Any lab result, doctor's notes, drug history (when I start), bill, etc.... goes in the binder so I have EVERYTHING documented.  If a doctor or care provider asks me 5 years from now when I started taking what or what my numbers were or anything about health, supplements, specialists I visited, etc...I will have ALL of the information at my fingertips.  I actually have 2 3 ring binders...one has all the health info and one has billing and insurance info.

Steve

P.S. My doctor did give me the % after the first 2 visits but did not even comment on it....I will ask him about it down the road.

Offline Ann

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  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: he never tells me !
« Reply #5 on: September 03, 2009, 08:50:49 AM »
Hi Jay,

Because my clinic is at a teaching hospital and because I'm "stable" (well, my blood-work is, don't know about the rest of me! ;D ;) ), I only see my consultant once in a blue moon these days. More often than not, I see "trainees", which I don't mind now days because I know enough about hiv now to know what's what. My consultant always gives me my percentage (once I started asking), but the trainees, well, some do, some don't. The ones who don't, I ask and if they refuse (it happens), I demand. In a polite but assertive way, of course. ;)

You have every right to know ALL your results and values.

If you find you sometimes forget to ask for the percentage, write it down with any other questions you may have for the doctor BEFORE you go to the appointment, and don't forget to take the paper/notebook with you to the appointment. Write down the answers too - it's so easy to forget what was said. I still write down my questions and the answers after eight years of appointments. The day I stop writing things down will be the day I develop a mega-ram memory in my head and I don't think that's gonna happen any time soon.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Robert

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  • Posts: 2,649
Re: he never tells me !
« Reply #6 on: September 03, 2009, 12:30:53 PM »

Hi ! I wonder if someone could help me out please.Whenever I go for my lab results the doctor never maentions the %..... CDs 750 and VL undetectable with no side effects and my general health is good . 
                                                      kisses Jay

750 t-cells is a good healthy number.  I wouldn't worry too much about %.
..........

Offline minismom

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  • Posts: 2,608
  • Quocumque jeceris stabit
Re: he never tells me !
« Reply #7 on: September 03, 2009, 07:47:25 PM »
I always get a copy of Mim's labs.  Our (new) doc is so amazing, he types and prints out everything that he is going to talk about during the visit, what labs were performed, an extra copy of our previous labs, any questions he wants to ask us, and the results of research he's done (if any).   The last visit, our packet was 7 pages long!

Steve, we're on our 5th 3-inch binder :o

Ann, nice and assertive - you gave me a chuckle.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline confidentIwillbeOK

  • Member
  • Posts: 131
Re: he never tells me !
« Reply #8 on: September 03, 2009, 10:50:17 PM »
Steve, we're on our 5th 3-inch binder

I don't have enough book shelf space for that!  :D  Think I will have to start digitizing everything and keeping it on my 'puter.    ;)

On a serious note please let me know if you have any tips or tricks on organization of all the data.  I am already getting a little overwhelmed with the paperwork I have now and I have only had 3 visits. 

Offline antibody

  • Member
  • Posts: 525
  • "every man thinks his burden is the heaviest"
Re: he never tells me !
« Reply #9 on: September 03, 2009, 11:27:56 PM »
mine never mentions it either. I don't really care I just wanna know the CD4 and viral load.
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline Ann

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  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: he never tells me !
« Reply #10 on: September 04, 2009, 08:43:54 AM »

On a serious note please let me know if you have any tips or tricks on organization of all the data.  I am already getting a little overwhelmed with the paperwork I have now and I have only had 3 visits. 


Have you found the Graph Your Labs section of this website yet? That's one way to keep track. Another is to create a spreadsheet. If you don't have MicroSoft Office on your computer, there's free office software available to download at Open Office - it's pretty good and it's compatable with MS Office. And unlike MS Office, it's free! :)

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: he never tells me !
« Reply #11 on: September 04, 2009, 10:21:46 AM »
Steve, we're on our 5th 3-inch binder

I don't have enough book shelf space for that!  :D  Think I will have to start digitizing everything and keeping it on my 'puter.    ;)

On a serious note please let me know if you have any tips or tricks on organization of all the data.  I am already getting a little overwhelmed with the paperwork I have now and I have only had 3 visits. 

I keep the labs and tests together and a separate file for prescription drug info.  File the bills by year (Billing info is a lot less important than medical info once it is paid.)

Also I have a spreadsheet with:
Doctors, clinics, hospitals:, specialty, address, phone, fax ...
Drugs: current and former with doses, dates and comments.  It is really important to note why you stopped a drug.   
Lab values (and graphs)
Tests and vaccinations: how often they should happen, which doctor prescribed them and when they last happened
I give each routine doctor an updated printout of the doctor and drugs lists every year or so.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline jay195

  • Member
  • Posts: 67
Re: he never tells me !
« Reply #12 on: September 04, 2009, 03:58:53 PM »
Thanks everyone for your help.The doctor does give me a copy of the lab results but the % is not on it.Anyway not to worry. I shall ask him about it next visit. Yes, Anne I have done "graph my labs" to help me keep check.

                                           Jay  kisses

Offline confidentIwillbeOK

  • Member
  • Posts: 131
Re: he never tells me !
« Reply #13 on: September 04, 2009, 05:42:22 PM »
Thank you Ann and Assurbanipal.

Once I get some more numbers I can start using "Graph my labs".  My first test was just VL and the second test the lab screwed up and I only got CD4 with no VL.  Third test with both CD4 and VL taken on Tuesday should be back in a few days.  Will also get cholesterol and some other data back.

Thanks,
Steve

Offline minismom

  • Member
  • Posts: 2,608
  • Quocumque jeceris stabit
Re: he never tells me !
« Reply #14 on: September 06, 2009, 09:35:11 PM »
I'm way old school.  I had LOTS of 5-subj. notebooks with everything hand written.  I'd write down dates, times, who we saw, what was done, when and what Rx we filled. I wrote down questions to ask and then the docs answers.  I even wrote down when I called and had to leave messages (what I said, the time I called and if and when it was returned). When we were in the hospital, I wrote down everything from who her nurses were to how much her diapers wore, her intake, her IV meds, what her docs said...very detailed.  Hubby scanned them and printed them - didn't save them, though.  They're now in 3-ring binders.  No real organization to them other than by date.  :-\

Sorry I couldn't be more helpful. Just write down everything that you think is important and keep it. 

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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