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HIV Life >> I Just Tested Positive

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Choosing2Liv
Legend

Reged: 03/21/06
Posts: 581
Loc: South
Final Hope Gone - Need Your Help
      #186312 - 04/13/06 04:45 PM

Well, I just spoke with the nurse at my infectious disease doctor's office to get the results of last week's blood test. After verifying my date of birth and social security number, she began to rattle off numbers to me. I quickly interrupted her and asked did this mean that the previous test was not a "false positive?" She chuckled and said, "Oh, I see you're a naive patient." (NOT A GOOD ANSWER!) Well, I guess I am "naive" since I was still hoping that all of this was a huge mistake and that this nightmare would be over.

Soooooooo.....it's now time to face reality.

I need your help. Luckily, I had enough presence of mind to have her repeat the numbers so I could write them down, but I really didn't hear her explanation of what they meant. I don't know whether I'm in decent shape or if I'm knocking at death's door. One thing I did hear her say was, "HIV is like hypertension and diabetes...just something you have to learn to live with...just take your medicine and you'll be fine." -- BULL!!! -- I'll trade my one virus for a both of the others any day. (That's another post.)

Please help me decipher where I stand. Here are the results:

DNA by PCR = 27,291

T-cells - 759

Liver enzymes are slightly elevated

I will become more educated as I read more about this disorder, but I'm too bummed out today to look for answers. Thanks for being here for me. Thank you in advance for helping me understand what the above mean.

-Gary

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Final Hope Gone - Need Your Help new
      #186315 - 04/13/06 05:12 PM

Gary, it didn't become real to me until I saw that first set of numbers. I wasn't thinking it was a mistake, it just didn't sink in. But your numbers are great! A good place to start! Did they give you the CD4%. That is an important number to watch too. With those numbers you could be a ways from treatment. Many people would be thrilled to have those numbers. As a general rule, treatment should be considered when the CD4 is around 350 or the viral load is above 100,000. So see, you are in FANTASTIC shape. And opportunistic infections aren't a problem till you get below a cd4 of 200. I would say you are in way better than decent shape. You are probably just going to be monitoring things for a long time.


--------------------
David
Sustiva, Epivir, Videx EC


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littleprince
Fanatic

Reged: 03/15/06
Posts: 64
Re: Final Hope Gone - Need Your Help new
      #186317 - 04/13/06 05:41 PM

relax, breathe and breathe deeply, observe your thoughts but focus on your deep breathe. for one, your cd4 is so high, much much higher than mine that i am envious. you will be fine. you are not alone.

--------------------
You Are What You Tolerate.

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Choosing2Liv
Legend

Reged: 03/21/06
Posts: 581
Loc: South
Re: Final Hope Gone - Need Your Help new
      #186321 - 04/13/06 05:46 PM

Thanks David for the response. It's good to hear that I am not in horrible physical shape (although I am an emotional wreck right now).

My first doctor told me that my CD4 was 539. That's only 189 points from the 350 mark. Is there anything I can do to widen that margin?

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Final Hope Gone - Need Your Help new
      #186322 - 04/13/06 05:48 PM

Gary - When I have more time I will spend a bit of time on a note to you... Your numbers are VANTASTIC however! But unfortunately, your +ve.. I know.. Ive been there to..

Love

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dj1979
Guru

Reged: 03/02/06
Posts: 276
Loc: rural upstate NY
Re: Final Hope Gone - Need Your Help new
      #186325 - 04/13/06 07:31 PM

Gary,

I'm new at this too, but from what I've seen & read, your numbers are great. I just got mine yesterday, labs drawn 2 months post exposure, and my CD4 is 569. I've also had problems since ARS with slightly elevated liver enzymes, but they're not as bad as they were 2 months ago.

Hang in there - I went through all that crap, thinking it had to be a false positive, the hematologist I was seeing was helping feed that, because he thought it was Lupus, which DOES cause false positives. All tests for Lupus were negative, though - and here I am with HIV.

My doctor told me that it would more than likely be 10 years before I would need treatment, and your CD4 is better (higher) than mine!! You just need close monitoring, frequent labs, etc. Are you comfortable with your doctor? It helped me a lot to switch to a new primary care doctor (damn managed care plans) that has nearly 20 years experience dealing with HIV.

Keep hanging out here - it helps so much. We care.

--Donna


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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Final Hope Gone - Need Your Help new
      #186331 - 04/13/06 08:13 PM

Gary, what a "kick in the Pants!" (not to happy about your nurse and her professionalism). I know you have alot on your plate right now. Alot to dijest, but don't try it in a day. I know you have some disclosure issues with your other half etc. Which, I know is what probably is the most perplexing situation. But, this road right now is one way, and you will have to go along it until it widens out a bit. Don't worry about the virus to awfully much - In a perfect world and with the numbers you gave puts you around 52% that gives you quite a bit of time before even contimplating next steps. Your in the "watch and wait zone" for a long time. This does not mean you can sit back and watch time fly by. You need to tell your partner and work that relationship out. Find a GOOD ID specialist and in 3 or so months get your second set of labs to start trending. Again, you have enough to chew on for now. I pray that your interaction on Friday is a good one and if you want to bounce any qestions off of our heads, ahead of time, feel free to do so...

Your going to make it but keep your head screwed on as much as you possibly can. Go work out, jog, run, hike. Physical activity really helped me. Then if you still are having troubles talk with your doc about anti-depressants, anxiety meds do help and releive the tension.

I am truly sorry for what you have to deal with. But we all have in one way or another, and here we are... Doing pretty dam well I might add..

Love and Peace,

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sadface
Legend

Reged: 02/15/06
Posts: 797
Re: Final Hope Gone - Need Your Help new
      #186358 - 04/14/06 12:03 AM

Okay Okay, I am going way beyond my Christian beliefs here. I WANT HER NAME AND WHERE SHE WORKS!!! That pisses me off Gary, how dare her? God forbid her cat ends up missing...tee hee tee hee...
Love you babe, you will be okay!!
Missy

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rain05
Fanatic

Reged: 01/24/06
Posts: 67
Loc: MD
Re: Final Hope Gone - Need Your Help new
      #186366 - 04/14/06 01:36 AM

Sadface... how many glasses have you had tonight?? lol You are on a roll girl.

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Choosing2Liv
Legend

Reged: 03/21/06
Posts: 581
Loc: South
Fighting Back new
      #186380 - 04/14/06 09:36 AM

Thank you Missy for inspiring me to do something this morning that I usually would never do. I grew up in a family where we were taught to show Christian love, don't make waves, "pray for those who despitefully use you," "blessed are the meek...," etc., etc., etc.

Well, the more I thought about how that nurse treated me, the angrier I got at myself for not setting her straight. SO, THIS MORNING I DID!!!

I called and asked to speak with Nurse Linda. The person who answered the phone could sense that I was NOT calling to wish Loose-Lipped Linda a "Happy Easter." I identified myself to Linda and recounted yesterday's conversation. (She remembered me well, because I called while she was preparing to leave for the day.) I explained to her that I was hurting and somewhat in shock and her careless lack of professionalism did not help the situation. I went on to tell her that if that type of behavior is customary for her doctor's practice, then maybe I needed to tell him that I would be looking elsewhere for assistance.

To Linda's credit, she immediately and repeatedly apologized for how she came across. She even tried to explain (i.e., "justify") her comments. Although most of her explanations were bogus, she did enlighten me on the meaning of "naive patient." Apparently, that is a patient who is not on meds.

In any event, it felt empowering to let her know that patients with our condition also deserve to be treated with respect. WE ARE HER REASON FOR WORKING THERE. Maybe she will keep that in mind the next time she is tempted to rush through another patient telephone call.

Thanks Missy for rattling my cage! (I am lion, hear me roar!)

-G

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rain05
Fanatic

Reged: 01/24/06
Posts: 67
Loc: MD
Re: Fighting Back new
      #186384 - 04/14/06 10:23 AM

Wow!!
That's wonderful Gary! I am proud of you!

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dj1979
Guru

Reged: 03/02/06
Posts: 276
Loc: rural upstate NY
Re: Fighting Back new
      #186399 - 04/14/06 11:44 AM

You did a great job - and a lot of people will probably benefit from it, not just you. Glad it was empowering for you, and it should be!! Pat yourself on the back, you did a great job!!

Hang in there.

--Donna


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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Fighting Back new
      #186448 - 04/14/06 04:32 PM

Never let them treat you as a number on a piece of paper. Later than sooner Gary, you will actually become responsible for your own treatment plan. You will be in charge just as much as the doctor. Give it some time and let them take care of you. I am sure you have made your point. But as you can see, we are all just human. Everyone has their faults. I tend not to look so deeply into little things anymore. I think Im becoming a BIG PICTURE guy.... hummfff...

Love

Eric

ps I guarantee you that Linda did not sleep easy that night!

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Final Hope Gone - Need Your Help new
      #186495 - 04/15/06 08:54 AM

I cant believe you didnt get your numbers on a complete workup sheet.....my doctor always puts numbers on paper to give me. NOT VERBALLY!!! Why not request them in writning?

--------------------
6 ft tall poz bear in Philadelphia

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sadface
Legend

Reged: 02/15/06
Posts: 797
Re: Fighting Back
      #186500 - 04/15/06 09:16 AM

Good thing Gary, I was about to go take her cat....YOU GO BOYYYYYYYYY!!! Don't ever feel that you cannot be Christian, and still stand up for yourself. You have every right to tell her..HEY, back off lady. I love you and you are going to make it... Oh, and Rain, I had 2 glasses of champagne. TEE HEE
Love and smootches,
Missy

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