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Author Topic: Newly diagnosed first doctors appointment tomorrow  (Read 2010 times)

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Offline zig-zag

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  • Posts: 7
Newly diagnosed first doctors appointment tomorrow
« on: August 06, 2013, 07:32:51 AM »
Don't really know how to start. I recently found out the my boyfriend of the past year has been cheating on me since March, i went and got myself testing thinking I was just being cautious but I came back positive for HIV and now feel really lost. I have my first specialist appointment tomorrow and have no idea what to expect.

No real idea what happens from here, and dont have much support. My ex was my main support system as my family can't accept the fact that I am gay, so I have no one close that i can turn to. Most of my friends I share with my Ex and he is the only boyfriend i have ever had, so people will know if i am positive it has to be from him. So lost

Offline Jeff G

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  • How am I doing Beren ?
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #1 on: August 06, 2013, 09:03:45 AM »
Hi ZZ and welcome to the forums . I bet you will be a little relieved when you see your doc tomorrow and he/she can arm you with more facts and assure you that you are going to be OK .

I have lived for 30 years with HIV and live a pretty good life and I have confidence that you will too . Right now it may not be a comfort to know that this gets better in time but it does get better , this I promise .

Offline mecch

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  • Posts: 11,704
  • red pill? or blue pill?
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #2 on: August 06, 2013, 09:36:47 AM »
Hi. You can find support in this Forum.  After you have a chance to catch your breath, check out what support centres there are in your location - an ASO might have groups, etc.

Also, I hear what you say about losing friends after a break up.  SUCKS.

But you might decide to make a list of these friends you share with your ex, and identify one or two you really value as friends and want to continue being friends with. And make a go at that.  Not necessarily to find support for your diagnosis, but because if they are real friends, you have a right to see if the friendship will hold, without the ex around.   No man is an island.  You need friends.

Also, just checking.  Your "ex" mentioned in the second paragraph, is the same guy as the "boyfriend", cheating since March, in the first paragraph? 

If you find you need to tell your friends, and you have every right to, don't worry about whatever conclusions or gossip they will spread about the ex.  Its really not your problem anymore, the ex.  He needs to get tested and deal with his own life.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline zig-zag

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  • Posts: 7
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #3 on: August 06, 2013, 10:28:22 AM »
Yes its the same guy, he's been cheating since March but i only found out recently, he is the only boyfriend i have ever had.

Offline Cojo

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  • Posts: 196
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #4 on: August 06, 2013, 10:51:10 AM »
Hi Zig

I too was pretty anxious about the first dr appointment, and oddly relieved at the same time that I would start to get some answers through data.
You ask what's next?
Luckily for us in 2013, the whole approach to HIV is current, proven and tested to work. We are the benefactors of many who went before us that literally gave their bodies to be tested on.
So here's the deal.
You will get lots of blood work done ( 15 vials for me!!) which of course doesn't hurt and it helps if you count backwards from fifty to make time pass and distract yourself.
In about ten days, you will get lots of information back, but here are what I believe are the most critical.
- your viral load count - how much virus per ml is circulating in your blood. If your infection is recent this may be in the millions....don't freak out, it is normal. Your body is just in the midst of figuring out a counter attack. Most folks see a pretty dramatic drop naturally in time. Remember that above all, you have the big guns of the anti retro viral drugs (ARV's) at your disposal which will literally in months knock the virus to undetectable. If the first combo doesn't work (rare that it wouldn't) there are dozens of other options.

- your CD4 count and % - a baseline number of your T cells and how they have been affected by the virus. Average range is 500 and up,  350-500 shows some damage to immune system, 200 and below puts one at risk for opportunistic infections. Here's the deal ... the less amount of virus circulating, the less damage to the immune system. Knowing this many advocate to start treatment right away to knock the bastard virus down and literally out. I chose to start treatment after my second set of labs to take control.  I was worried about the prospect of those awful side effects that I believed would happen - the worry was unfounded and useless - I had zero side effects and two years later the same. My only " side effect " is having an undetectable viral load, a CD4 at 500 and feeling great.

- resistance testing - the virus can be a tricky little beast and in about 10-15% of new infections can have resistance to certain drugs or drug classes. Again, if, and only if this is the case, it is very manageable with many options available as alternatives.

So... you got it and it sucks. You, like me probably have a range of emotions and confusions.
My advice to you is this. Be gentle on yourself and be optimistic. One day, you will see this as more of an annoyance than a catastrophe. There are tons of supports and top notch science that will make you well and you will probably outlive your negative counterparts because you will have excellent and comprehensive health care.
Be well and stay strong - and in touch with us - we're all in this together!
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline mecch

  • Member
  • Posts: 11,704
  • red pill? or blue pill?
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #5 on: August 06, 2013, 10:59:35 AM »
And you recently broke up? Wow, triple whammy! I'm sorry you have to deal with so many things.  I love Cojo's wise post to you!  Not easy but try think about this day foward and dealing with the diagnosis, and put the bad relationship on the back burner.  "Time will heal everything", though it's a mixed bag to hear that.  You can do lots of constructive things to deal with HIV but you can't do much about the ex and his shady ways. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline zig-zag

  • Member
  • Posts: 7
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #6 on: August 06, 2013, 11:20:11 AM »
Cojo - 15 vitals, is that as in sometimes you have that many or that that is what you have taken all the time? Why are so many taken if there only seems to be a few bits on information to be really focused on? You say you chose to start treatment after your second tests, isn't that something your doctor is in control of rather than you yourself?

mecch - Yes i broke up with him the same day i found out about the cheating, i just couldn't be with someone who could cheat, and the tests followed that, because well i thought better safe than sorry but had convinced myself everything would be just fine, which made the shock that much bigger.

Offline Cojo

  • Member
  • Posts: 196
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #7 on: August 06, 2013, 11:38:56 AM »
Hey Zig

15 vials but only one needle. Remember that they put the docking needle in and then pop the vials in and out. Why so many? It is an uber-physical. My doctor wanted to check everything to get a fresh baseline. Those vials weren't all HIV related; actually the majority were typical blood work procedures like blood sugar, cholesterol, hemoglobin etc etc. The doc also did a general STD scan and hepatitis C. Don't give the blood work part one ounce of worry - it's quick and remarkably drama free.
Starting meds is YOUR decision, not your doctors. He/she can give you best advice, but the decision is yours. If you don't like or are doubtful of the advice get another opinion. I know the disclaimer on these forums says this isn't a replacement for medical advice, but I put a lot of stake in the decades of accumulated wisdom on here. It's another tool in your toolkit.

One question for you ....knowing you also had a breakup, who/where are you getting support from right now?
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline zig-zag

  • Member
  • Posts: 7
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #8 on: August 06, 2013, 11:59:28 AM »
Must admit not the biggest fan of bloods, I'm guessing now it's something i will have to get used to. Okay, all the things i read made it seem like the baselines for starting meds were pretty clear cut that's why i was unsure, but its good to know I have a say in it too.

And support wise i dont really have anyone, i pretty much locked myself in m house for a while and didn't come out, and when i did meet friends the other day, the break up wasn't really mentioned and the HIV certainly wasn't. I don'r really have anyone for support, right now.

Offline Cojo

  • Member
  • Posts: 196
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #9 on: August 06, 2013, 12:23:21 PM »
Zig - you have many of us here, I can guarantee you that!

Are you in an area that has any support groups?

About disclosure....everyone has there own pathway, but I will tell you what I did. I told only a few very close friends immediately and then made a pact with myself to not tell anyone else until I got my head around things. I guess my containment strategy helped me feel like I had some control left over what felt like a spiralling mess.
I'm glad I did it that way because I still can contain which areas of my life will have HIV awareness and which won't. For example, no one in my family knows which means that my elderly parents don't worry and family gatherings are HIV-free so to speak - that's just my way, others do it different. One thing for sure, once it is out, its out.

You said you've basically isolated yourself. I get it as an immediate reaction - retract to safety (kind of like a turtle and its head in its shell),but I'd encourage you to really challenge yourself to get into routine again to help along the normalcy process. Leatherman (one of my favs on here :)) reminded me in the early days that even though I'm consumed with it, HIV is not stamped on my forehead and no one knows. So go out, grab a latte, buy some new shoes and just be...live in the moment because, the moment, right now, is ok

You can always private message any if us after you've had three posts btw.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #10 on: August 06, 2013, 01:02:04 PM »


  Hi Zig Zag,

    I'm sorry to hear about your recent diagnosis.  I'm glad you found the forums, welcome.  I know it seems like a lot right now, and I'm sure your head is spinning.  It will settle down with time. 

    It really sucks that you have no one to physically lean on at this moment.  I know how lonely one can feel in the beginning of all this.  Just know you are not alone.  The support here is valuable.

    Hang in there and if you need someone to chat with PM me.

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

Offline tednlou2

  • Member
  • Posts: 4,887
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #11 on: August 06, 2013, 10:38:19 PM »
I'm sorry to hear all you're going through, especially the positive test.  Well, actually the family issue hits me the most.  I feel so fortunate that my family and my partner's family are so supportive.  We have a few, who don't get marriage equality, but that's nothing in comparison to being shunned and totally unsupported.  I know those families, who are against being gay, use an HIV status to feel they are right.  And, they would be more likely to be ignorant of the virus, thinking they can be infected from casual contact. 

Did you and your partner test, when you got together?  He could have been infected for some time, but very well could have from cheating on you.  Do you think you would have forgiven the cheating, if you had not tested poz?  As already pointed out, if and when you decide to discuss your status with others, you can't let the fact that people will assume he is poz be an issue.  You don't have to tell them he is poz.  You can just say they will have to ask him, and you can only talk about your status. 

I wish you all the best, as you begin this journey.  Things will get better.  That's not to say there won't be bumps along the way, but you can certainly get through this.  The biggest issue is getting at least one person, who you trust and can count on for support.  I think we all need at least one person, who we can lean on and who can lean on us. 

I recently saw a young guy, sitting in the waiting room at my HIV doc.  I said hello.  I could see how much mental anguish he was in.  I knew this was his first visit, because he was meeting with a care coordinator.  I saw myself in him, from my first visit.  But, I had my partner.  I wanted to give him my info to get in touch, but I didn't know whether he would welcome that, so I didn't.  On my ride down the elevator, I got emotional.  I felt I should have reached out to him.  I went back up, but he had already been called back. 

Offline zig-zag

  • Member
  • Posts: 7
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #12 on: August 07, 2013, 01:42:12 AM »
tednlou2 - I've been used to the no family support for a while, I pretty much knew before i came out how it would be because my parents never hide the fact that they believe it is wrong.

As for my partner yes he got tested beforehand as a precautionary things, especially as he'd never had full sex either, but he had done other sexual stuff with others. I found his texts messages and confronted him about it and he admitted to actually cheating. It's actually why i went and got tested, because i knew he hadn't been faithful. I can see myself having forgiven him if i hadn't tested positive, if it was a one off maybe but it was many different people over a good few months, and personally i need trust within a relationship.

I think that's very good way of handling it, tell people I can only talk about myself which is true. And I will certainly try and find my one person to lean on.

I'm sorry to hear that you didn't do what you feel you should have at the appointment, but you know you can do it in the future.

Offline Cojo

  • Member
  • Posts: 196
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #13 on: August 07, 2013, 02:13:47 PM »
hey Zig....how did the doctor visit go today? Thinking about you
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline zig-zag

  • Member
  • Posts: 7
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #14 on: August 07, 2013, 02:54:34 PM »
It went well, came away feeling much more informed than I was before hand, so the is certainly a good thing.

Offline Cojo

  • Member
  • Posts: 196
Re: Newly diagnosed first doctors appointment tomorrow
« Reply #15 on: August 08, 2013, 03:47:53 PM »
Great news!  That is one huge checkmark you can tick off on your road to dealing with and beating this virus!
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

 


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