Not New but..

[bhamrichard]

Hi All..

I've been reading poz.com and the forums for quite some time, but figured I should introduce myself. Hi I'm Richard

I was diagnosed April of 2012 with hiv, honestly did not have a clue at the time. I had felt weak for a couple of days, and early one Friday morning (like 1am early) i woke up to go to the bathroom. My feet hit the floor immediately followed by the rest of me. I laid there a good 10 minutes before I could stand myself back up. In my usual stubborn style, I took a shower, and drove myself to the emergency room.

At the ER, they took some vitals, and immediately took me to the back, which was surprising to me. Apparently my blood o2 content was low enough they were concerned.  After a chest X-ray and a cat scan, the doctor in ER told me I had Pneumocistis.  Never heard of it.. I was admitted to the hospital, and spent the next six days on introvenus and oral antibiotics, and steroids.

My personal doctor had been coming by to check on me, on the third day i'd be hospitalized, we sat down for a chat. He told me I'd nearly waited too late, it had taken the anti-biotics that long to start working. He said if I'd waited much longer, we wouldn't be having this conversation. Yes that snapped my attention, because frankly I didn't FEEL bad, no fever, no coughing, no.... nothing! Just a little tired/weak feeling.

Ran through all the stuff with him, and he revealed my CD4 and VL counts: My cd4 was at 10 (ten), and my VL was 400,000. Martian speak to me at the time.. while I was still in the hospital, he introduced me to a HIV specialist.. and they drew blood for a resistance test (Can't take Atripla, darn it).

By the time we got around to starting treatment (Truvada and Isentress), my CD4 count was 5, VL was 495000. At last test, my cd4 was just over 300, and vl was 1300, and it's about time to test again.

This is getting WAY longer that I wanted..

To try to be briefer... how do you cope? I mean I've known for coming up on 10 months now, but mentally.. I've only just started to try to deal. I've been NUMB on the subject since I was diagnosed and really haven't let it sink in.

I don't have a close circle of friends, nor really anyone that I feel that I can just have an open discussion about it. I'm a shaken bottle of soda ready to blow it seems like most days. The hospital recommended at the time, that I contact a local aids outreach organization, but so far I've not been able to make myself do that.

I want to deal with this and try to move past it as much as possible, but don't know where to start..

[anniebc]

Hi Richard

Welcome to the forums.
This is a standard reply I make to all new comers, I hope it helps a little.

Reaction to the results is difffernt for everyone, but over time you will find a way of coping with the virus that suits you and it might be quite differnt from how others deal with it.

No one here will ever tell you it's easy, it's ok to get angry or scared but don't let it take over your life, stress is natural it can actually help some of us get through certain situations but excessive stress can cause you physical symptoms and can damage your immune system further, just find ways to manage any stress you may be feeling, learn to relax and listen to your body.

Along with HIV comes anxiety and one way of tackling this is through information. gaining confidence in yourself and making informed decisions about your future.

Support is very important and you can get this from a qualified ID doctor , family, or a friend that you can trust and there are many support organizations out there...just make sure whoever you discuss this with is sympathetic, supporting and non judgmental about your HIV status.

Most important of all you have to remember that being HIV+ does not stop you from being the person you were before your dianosis.

Keep in touch here, the guys are here to help you with any problems you come up against.

Aroha
Jan

[Jeff G]

Hi Richard and welcome to the forums . I think you will find that the forum is a great place to give and get the support you need . I know its tough going at first but it does get better . Jeff .

[positivelynerd]

Hi Richard,

Sorry you had to find us, but it's really fortunate that you did.

I was diagnosed in September 2012 and like you I am trying to figure out how to cope with all this.  I am lucky to have close friends to confide in, but it doesn't always help  much.  I find these forums offer what they can't: personal experiences and empathy in what I've been/am going through.  I would have to agree with your hospital's recommendation to seek out an ASO, I live in a relatively large city and there is a really great comprehensive clinic in my area.  They have support groups and an onsite psychologist.  I don't know where you live, but perhaps a local metro area has services that you can use.

I want you to know you took a great step forward in seeking medical help and now opening up on these forums.  Don't underestimate that first step.  And when you feel like that soda bottle is ready to blow- stop shaking it, take a DEEP breath and remember you're gonna keep breathing.  But take it easy.  This isn't a sprint, it's a marathon, and never sell yourself short on your progress

Here's to good health and hope.
-D

[tednlou2]

Richard,

Welcome to the forums.  I am glad to hear things are better physically, even though not the best mentally.  My diagnosis story is very similar to yours.  I didn't feel all that ill, and bam!  I was being rushed by ambulance to the hospital.  I couldn't breathe and was turning blue.  It really came out of nowhere, really.  I had no clue I was that ill.  No cough.  Not out of breath.  I was still smoking at the time.  I felt like I was coming down with the flu, but not having it yet.  Just a little fatigue and blah feeling.  My lungs sounded clear.  I was having awful back and side pains.  I thought I pulled a muscle.  I would later learn that was plural effusion around the lung, that was causing the awful pain.

I was in ICU for a few days and in the hospital a little over a week.  They kept asking about my HIV status, which made me mad at first.  They said all my blood work was off--everything.  I consented to an HIV test.  A doc said the exact same thing to me.  He said I was so lucky to be so close to medical care, or I would have likely died. 

I was on a high for about the first 6 months.  We began doing home remodeling projects.  I think it was my mind's coping mechanism.  But, that would change.  I began having so many fears.  People would say I was irrational, and I would know I was sick next time.  But, I had gotten so ill with very little warning.  I feared it would happen again out of the blue.  I carried my cell with me, even at home.  I was afraid to travel.  What that doc said had an impact on me.  I was afraid to be too far from medical attention.

Anyway, I have come a long way over the last four years.  I will take a shower, without my phone sitting outside the shower..lol.  I have traveled.  I don't have nearly as many panic attacks.  But, I am not the same.  I still have those fears, when we are way out in the country, away from help.  How are you doing?  Do you have fears of getting ill again, or just coming to terms with being poz?  I see a therapist.  I highly suggest it for you.  Many of us have PTSD, especially if you got deathly ill.  You said you weren't sure where to start.  Having people here to talk with is a good start.  But, a therapist would be another good start. 

Keep in touch.

Ted

[bhamrichard]

Wow.. can't believe it's been 8 months since I posted this. I'm sorry if I left anyone hanging. I was more or less in a daze those first few months.

Since then I've stayed (mostly) on my prescriptions, I admit taking the things timely has been a difficult job and I have missed more than I should. Plus the fact that my health insurance company makes me order them mail order, and there's been issues there with late/incorrect RX's arriving.

As of two weeks ago, my cd4 was 154, and VL was 124000. Should have probably been much lower but I went through a period of just not caring, and stopped taking my meds for a good three to four months.  Issues with trying to find an ID doctor only exacerbated the problem and just frankly pissed me off.

Now my outlook is improving, had a good long talk with my regular physician and  his office has me setup with a new ID doctor to go see.

All in all, I guess it hasn't been all that bad.

I wanted to thank everyone for the comments, and positive comments I received. It's very comforting to know that you really aren't alone in the middle of all the turmoil.

Thank you all, Richard

[mecch]

I am glad you are finding good rapport with a doctor and hope all goes as well with the new ID.  As it stands your treatment seems like a clear failure.  8 months of treatment should deliver someone to undetectable or near undetectable VL.  You'll need resistance testing and then start the appropriate combo. Whether you are resistant or not, the docs will find an effective one.
Maybe you can figure out here how to solve the challenge with adherence. I appreciate your positive outlook on things, but from a distance as far as dealing effectively with HIV, the last 8 months were pretty bad... Have to find a way to come to terms both in behavior/access - how to adhere without anger and working around and solving any and all access problems - as well as any psychological stuff that contributes to this state of affairs.   
Dont feel bad - plenty of people have had challenge to adhere. Just keep the optimism and he relative calm and figure out a way to adhere, this time.

[Theyer]

Hello Richard and welcome , sorry you have had such a crooked route following your diagnosis , but you do read like your in a better place now .I guess what I most want to say is don,t be a stranger. Isolation with all this won,t help , as many off us know to our cost.

 You are getting your foundations set well ,having a Doctor that you feel good with I think most off us old timers rate as important.

Take care and let us know how things are going.
m