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tested positive 11/20

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koi1:
 I just tested positive a few weeks ago (11/20/06). I have been struggling with digestive issues for a while and was not getting any better. I am wasting away having lost 25 pounds.

I decided to get tested because after an exhaustive array of medical examinations and tests, nothing could be found to be causing my digestive illness. I went to an anonymous site and after a 20 minute interview on my sexual/drug use behaviour my results came back. "I'm sorry, but your results are positive." said the counselor. I was stunned. I asked him about the reliability of the test and he told me it was pretty accurate. He did another test which required more rubbing of the gums. The counselor tried to get me to talk about my feelings, but I assured him that I was fine and that I didn't plan on killing myself just yet. Though I had suspected something horribly wrong with my body, one is never ready for such news. I said, "Yeah I kinda had a feeling it might come back positive, but I didn't think it would." I just told him that I wanted to go. I walked out of the little room cheerful so as to not let my friend who went to get tested with me know. His was negative. And he asked me what my result had been. "Do you really want to know?" "Yes," he said. I told him and his jaw dropped and he started to cry. I did not have such a reaction.

I was numb up until a few days ago when I finally broke down and cried.

Immediately after I was rediagnosed at another anonymous testing sight, I went to Kaiser and insisted on getting an appt. with my regular doctor. They told me he was going on vacation for 3 weeks and I would have to wait. I was desperate and I told the receptionist of my diagnosis. They called me back and said I could see him on his on call time. I let my doctor know of my status. He ordered a test to confirm and a T cell count. He scheduled me to see a specialist three weeks later. That day I also told him that I was having trouble breathing. He checked my breathing with a stethescope and insisted I was fine.

I started to worry that I might have pneumonia and my gastric problems were not going away. So I tried to schedule an appointment with my gastrointerologist. I got the sam spiel about him going on vacation. Once again I had to use the HIV card. They gave me an appt. the next day.

He started out our session by asking me how I was doing and I told him well considering the circumstances. I asked him why he had told me that my CD4 count had been normal 4 months ago and he said that the lab messed up and that he never really had had those results. That made me angry because he had lied to me, but at this point I needed him to help me. I told him that there was no way my cd4 count could be normal and that he should check the test my doctor had just ordered a few days ago.

He told me that he couldn't see it on the screen and invited me to look at his monitor. I saw it and felt my heart drop. I told him where it was on his monitor. I told him that it was low and he insisted that it was not that bad. I told him that I needed to see a specialist asap. He told me that would not be possible and that I already had a nice 90 minute appt. scheduled in two weeks. I said, "Listen this is serious, you already caused me enough delay by lying to me about my cd4 count. The least you could do is call up stairs and get me an appt." He could see the anger in my eyes and called up stairs to the infectious
diseases dept. "Uh, I have a nice young man here who would like an appt asap." They asked him what my cd4 count was and as soon as they heard 97 they told him to send me up there immediately.

I met with a great doctor and a team of nurses, a social worker, a pharmacologist, and a dietician. They started to calm my fears. I told the doctor about my trouble breathing and she sent me to get my chest x-rayed. It came back indicative of pcp. She introduced me to all of their staff. Discussed my condition with me. Told me I had AIDS. Got me on bactrim, ordered a battery of blood tests, an array of STD tests, a sputum test to confirm pcp, a genotype/drug resistance test...

Everyone was super nice and compassionate. The pharmacologist discussed my treatment regimen that would most likely be prescribed pending test results that would take 3 weeks. She calmed my fears by telling me that a lot has changed in managing this disease and that my prognosis was good. The Dr. set up an appt for three days later. I went in and they confirmed that I had pcp with the sputum sample results. However the Bactrim did wonders and my chest did not hurt anymore when I went to that appt. The pcp diagnosis was crucial because I could have ended up in really bad shape in the hospital. This shows how important it is to have a good specialist on your side. That day she also told me that luckily I had no other std's and no hepatitis b or c. One of the nurses made me laugh by saying, "Yeah you are a lucky guy, you should see some of the cesspools that walk in here." Gee, I wonder what she says about me when I am not around.

Ten days after starting Bactrim, I developed a bad reaction to it that put me in the hospital with a severe rash, fever, and dehydration. The day the symptoms started I had had traumatic episode with my family because my ex had taken it upon himself to tell them about my status. They confronted me and I had a
traumatic reaction to their confrontation. I just thought my rash was stress related. Calling the kaiser help line made it worse because they told me to just take benadryl and not stop the bactrim.

I spent 3 days in the hospital when my symptoms worsened. They ran a million tests to rule out any other infection. An MRI, a CTscan, a spinal tap, xrays, blood, urine feces. The spinal tap was excruciating and I yelled my ass off. 3 days later they were convinced that it was an allergic reaction to the bactrim, and I was put on Mepron for my PCP. While in the hospital my team visited me which made me feel good, because they really do care, I just got a good feeling. My spinal tap which tested for dozens of diseases came back negative.

Well I waited weeks for the drug resistance/mutation test to come back. My social worker called me at home and told me to come in for a chat. I told him that it would be great to get out of the house. I went there and we talked about life and how I am adjusting. I told him about my crying fit of the day before. He said it was good that I am feeling and not numbing my pain. I also had the nice surprise of getting my drug resistance test results that day. My pharmacologist told me that treatment options looked good because it had come back as a "CLEAN" virus, sensitive to all medications. The only thing wrong was that during my hospital stay they had done a liver function test and that was abnormal. She said it was probably due to the allergic reaction to bactrim and that before starting me on any medications she would have to run the test again to make sure my liver was in good enough shape to begin HAART.
That day I also met with the dietician to improve my Calista Flockhart look.

So I didn't get to start the meds that day. I am now going in on the 26th to hopefully start on Truvada and Sustiva.


A lot has happened in a month. Had I been more informed on the importance of knowing my HIV status, I would have gotten tested earlier. But that denial is a tricky thing to overcome. What I have learned is that you have to advocate for yourself and fight to better your health. Had I not fought for earlier appts. I would be two weeks behind. The anxiety because of what this virus is doing to me without treatment is painful. I hope so much will be resolved when I start my meds. I have a lot of hope. My shame is subsiding, my anger towards myself is diminishing. Yes, I was stupid, but the smart thing to do now is fight this virus head on and take care of my ravaged body.

I am sorry my story is so long, but it helps me by sharing my experience. Thank you for having such a great site, full of hope, love, and compassion.


rob

J.R.E.:

--- Quote from: koi1 on December 23, 2006, 02:48:05 PM ---  But that denial is a tricky thing to overcome. What I have learned is that you have to advocate for yourself and fight to better your health. Had I not fought for earlier appts. I would be two weeks behind. The anxiety because of what this virus is doing to me without treatment is painful. I hope so much will be resolved when I start my meds. I have a lot of hope.


--- End quote ---

Hello Rob,

Welcome to the forums, and thanks for sharing your story. Sorry you have had such a difficult time, but I do believe that when you get started on medication, things will improve for you.

Rob, I have been living with this virus since 1985. I always thought that when it was time to start on medication, that I would be ready and willing to do that. The reason I quoted you above, was because of the "denial" that you had mentioned. I think just about everyone of us , has gone through some form of denial, in living with HIV. I had mentioned that in another thread recently. There were several times throughout these past 21 years, where denial hits  pretty damn hard. I certainly know that I did for me.That denial,caused me to loose 30 pounds over a years time,( back in 2003)bacterial  pneumonia, severe case of esophageal thrush, shingles and a couple of other issues.
My original appointment for seeing the HIV specialist, was not until the end of November, of 03. It was eventually moved up to mid October. If it hadn't been, I don't know if I would be typing this message to you today !!

The main thing is, it sounds as though you are in good medical hands,  And you are staying on top of things now.

I believe you stated that you will begin Sustiva/ Truvada on the 26th. Make sure to read up on these medications, and to understand them fully. you will need to be compliant with taking the doses. You can find out about these medications in the "Drug Section" of the site...

When I look back, at how sick and wasted I was  in 2003, I can only tell you, that when I started on meds, I started feeling better and stronger almost immediately. Appetite improved 100%. The weight also came back on.

I know this all so new to you right now, and that your emotions, and thoughts, are going every which way, but things will eventually settle down somewhatand will get better once the meds are started.Allow time for yourself, to help sort things out. I suggests that you get yourself a journal.If you have questions or concerns, make sure to write those questions down. If you have questions, don't hesitate to ask away, someone will always be here to help you sort things out.

Take care Rob / stay in touch with us, post when ever you feel the need--------


 Ray

Andy Velez:
Welcome, Rob.

It's good that you have found us and that you took the time to talk things out a bit.

Getting used to having HIV as a part of your life takes time. Gradually you will learn everything you need to know. Most important is for you to find a doctor whom you can work with in partnership to keep you healthy. From what you have reported it seems as if you have the beginnings of a good team for you to work with.

Depending on where you are geographically, if you can find an AIDS service organization in your area that offers individual and/or group counseling I think that would be helpful as well.

You're always welcome to ask questions here or to discuss anything that's on your mind. There are a lot of people with experience here whom I think you'll find generous in their responses.

This is all very new to you. You're not going to fall through a black hole. So keep breathing and things will fall into place.

Cheers,

koi1:
I thank you guys for your words of encouragement. Reading about what people have gone through and where they are today gives me hope. Thank you so much for your encouraging thoughts.

rob

Longislander:
Rob, you've been through a hell of a monht or so, but you made it through like a trooper! You're story was an awesome read. Can't wait til you're more settled and share more of yourself with us!

Unfortunately you had to come to be here, but welcome to Aidsmeds!

Paul

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