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Author Topic: Here is my story- and yes, I'm scared. Advice always appreciated.  (Read 3996 times)

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Offline LikeaRock

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  • Posts: 16
Hello, everyone. Well, I guess it's time for my own post now after all the reading I have done on here. And kudos to ALL of you to have posted and responded to people's concerns, stories, ect. You have no idea what it does for people inside their mind, and their hearts. Certainley some of these posts have warmed mine- (heart that is).

Rather then to go into every detail of what has happened to me, I will quote a story on here from a year ago from someone. His situation was 99.9 % idential to mine. Not just what happened to him, but the fact he's 27 (I'm 30), worked out 4x a week, ate healthy, and was physically healthy (or so he "thought") before the PCP. Now there are a couple variations- unlike Tim, I actually gained 4 lbs in the hospital with PCP because I ate like a pig- he lost weight. And the Mother thing didn't happen to me- My folks live in another state. His very last post 4 months after the PCP was a very enthusiastic post how his CD4 is now at 432 VL- UD.  So, without further adue I will share his story with you, and what I'm going through now.

 


Main Forums / I Just Tested Poz / Came down with PCP, diagnosed in the hospital...reeling...  on: April 18, 2008, 08:46:00 pm 
Hi All-

Writing this from my hospital bed --I am obviously new to the site and have been reading a lot of the posts for information over the past several days.  Two weeks ago I had some flu like symptoms and I thought it was just the flu, I continued to work and go about my normal routine and my condition seemed to stabilize. Then last Wednesday (4/9) I was having serious trouble breathing and was admitted to the hospital with pneumonia.  They initially treated it like a standard case and I did not respond--was in fact getting worse-then they did the HIV test and determined that I had PCP and was HIV positive. Its been a scary number of days in the hospital--at points I felt like I wasn't going to make it out. Good news is I have responded the to the treatment for the PCP and my breathing and overall condition have improved to the point where I can most likely go home tomorrow Saturday (4/19). 

I am still coming to terms with my HIV diagnosis--prior to the PCP I was perfectly healthy, very active, in the gym 4 x a week and felt great.  Then, while in here I have lost 15 pounds and look so sick. My CD 4 count is a aterribly low 34 and I have yet to receive my VL numbers.  I am scared that I won't be able to get back to being the person I was two weeks ago--energetic, healthy feeling etc.  The doctors want to start me on ART as soon as I get over the pneumonia and reading on this site there are so many different combos/side effects to consider.  This is all a lot to deal with at once.  Any advice to a newbie would be appreciated.  Part of me is angry because I think I knew that I was possibly infected for several years and was in denial and in doing so wreaked havoc on my own health...pretty low right now....

and even worse the doctor decided to announce my status to me in front of my mother without any consultation with me--we found out at the same time..i wasn't ready to tell her but was forced  by the doctor..

anyways, sorry to ramble..thats all for now..thanks for all of you on the site and your helpful posts--they give me some hope at a time when I really need it.

tim

Ok- it's me again. So just so everyone knows, at the time of my diagnosis and hospitalization my CD4 was 44 VL over 700K. Like Tim, part of me (a lot of me) has known for years that I may be positive, but in such denial, I was too terriified to get the test, thinking it would ruin my life. In doing so, I too wreaked havoc on my own health. I have a great Doctor, and he started me on Atripla soon after I got out of the hospital. I  really like the Atripla and am VERY lucky to be in the small % of people who experience no side effects. Hell, I don't even get the dreams. I was released from the hospital on October 6th I thought I was gettinig better, then was diagnosed with the flu yesterday and have been running temps of 104. Im' so scared because I don't want to die from the FLU because my counts are so low. I don't want to die I'm so afraid of OI's. All this Bactrim makes me crazy, but I'm dealing with it.

So guys (and/or gals) here is where I'm torn and concerened.

About 3 hours ago I had a full blown panic attack after reading an article that said "recent studies have shown that  initial HAART therapy started at a CD4% of <5 has shown to have poor results. In 30 seconds,  I had collapsed on to the floor- at first I thought it was the end- but I have had panic attacks beforeoffer me  they are just not often. Tim's final post of his CD4 of 434 3 months later has been the only hope I'v had. Can anyone offer me more hope then this? You don't have to lie to me to make me feel better if the prognosis here is bad, even if Tim's was a sporadic thing. I won't feel whole again, I won't feel safe again, I won't feel me again, if I can't regain a normal CD4. But some articles have had devastating news on regaining CD4 anything above 400- stating most won't reach 500. I'm just so sad right now, I can live with the HIV the low CD4 I cannot.

I know there are some long-timers out there, so your advice is valuable as well. Share your stories if you'd like. I'd love to read them.


Scared and dazed,

Steve

Offline Assurbanipal

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #1 on: October 22, 2009, 05:22:45 PM »
Steve

Welcome to the forums. 

While it is definitely not a good thing to be diagnosed when you already have AIDS, there's a lot of us on here who have been there and are now pretty healthy.  Three years ago I was in the hospital with a lower tcell count and higher viral load than you have now.  And last month both tcell number and percent were back in the normal range. So, it is possible.  Not everyone has the same immune system response, but over time, with HAART, most people see significant improvements in immune function.

But right now is a pretty dangerous time for you still, and you need to take extra special care of your health while you are still relatively weak.  So make sure you adhere religiously to your medication schedule, take extra precautions in washing and preparing food, and avoid crowds to the extent possible.  This isn't a prescription for the long term, but a short term investment in your long term health.

Hope you feel better soon.

Assurbanipal
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 LikeaRock

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #2 on: October 22, 2009, 05:56:23 PM »
Thank you for your reply. That is good information. I forgot to mention my last CD4 was when I got out of the hospital. The results were <20. At that level Quest Lab, doesn't even report an actual number. Just so low right now.

Offline Inchlingblue

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #3 on: October 22, 2009, 06:16:09 PM »
If you take good care of yourself and are adherent to the meds your prognosis of recuperating back to normal levels is very good. That doesn't  mean it will happen in a few weeks, it could take longer. But the point is it is definitely achievable.

Part of that recovery entails remaining as calm as possible. It's a documented fact that excessive stress can have a detrimental effect on the immune system (I experienced that firsthand). If you are able to meditate or do yoga or absolutely anything that you enjoy that relaxes you I would highly recommend it as this will help speed up your recovery.

It's impressive you actually gained weight while having PCP, keep eating and don't eat crap, try to have  a healthy well-balanced diet. You might not want to go to a gym with your Tcell count but you should find other ways to exercise if you feel up to it, and don't overdo it.

Hang in there.
« Last Edit: October 23, 2009, 11:45:44 AM by Inchlingblue »

Offline jcmiami

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #4 on: October 22, 2009, 10:08:06 PM »
Oh boy can I relate to you...My name is Jose, I was diagnosed 3 years ago with full blown AIDS. I had PCP, thrush, CD4 at 21, viral load of over 800,000. The thing is I never looked "sickly" nor lost any weight at all and I am a husky guy so as you can see, this disease affects everyone differently.

Offline LikeaRock

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #5 on: October 24, 2009, 01:21:08 PM »
Thank you guys, for your replies. It's soothing to hear sound advice or perhaps even a person who can relate to you. I know my story may be "peanuts" for a lot of people on here since they have been through so much more. But it's still a battle for us all, and what may effect one person in one way, may affect another in a WHOLE different way. And for me right now it's nerve wracking because I have to watch everything I do.

I have decided I'm going to avoid crowds, bars, and unfortunately- the gym, where I think most bacterias like to hang out.

I just wish I knew how fast I am going to recover and get my CD4 >200. I'm 'out of work, and while ill, I can't look for a job. I can't afford to stay unemployed for much longer and my illness has put a huge damper in everything obviously. And if I can't work- I can't survive. Just want to get better, and fast hopefully.  :-\

Offline max123

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  • Posts: 377
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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #6 on: October 25, 2009, 12:07:43 PM »
hey rock.

sorry to hear your story. i'm also recently diagnosed, so while your situation is different than mine, i can relate to what you're going through. it sounds like you're getting on the right track though. definitely check with your state/county/city health department to see what temporary assistance you may be eligible for, at least until you recupe some & get back on your feet. are you receiving ryan white benefits?

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Dale Parker

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  • Posts: 266
Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #7 on: October 27, 2009, 01:37:24 AM »
Hey Steve: My story is similar to yours except I haven't had to be hospitalized. I was diagnosed in March of this year with a CD4 of 21 and VL of over 500,000. 3 months after starting the meds (Kaletra and Truvada) I had 159 CD4's and a VL of 750. I get my next set of results this Thursday. I'm not expecting a big jump but hoping that the numbers will have improved. There are a number of people on here who are long term survivors who started off with low numbers like ours. It takes a while to get the numbers up but it can be done.
Like you I am also unemployed. I found great support from my local aids group. I know how tough it is to be without a paycheck. I found I was telling everyone my sad story. I think telling people (especially strangers) was part of the way I dealt with the news. I did find by telling strangers that they often gave me good advise on where to look for help. Unemployment actually referred me to welfare and welfare got me on disability faster than if I had to deal with the disability office. I even told the guy are the cable TV office my story and got my cable bill reduced by 1/3rd.  
  Having aids is not is not a walk in the park at the best of times but it has given me a new outlook on life. A fairly new friend of mine said to me that he loves hanging out with me as I am "living life to the fullest".

Feel free to PM me any time you feel you need to talk.
Best of luck and health
Dale
« Last Edit: October 27, 2009, 01:39:25 AM by Dale Parker »
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline Inchlingblue

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #8 on: October 27, 2009, 10:58:15 AM »
I just want to add, re: Dale Parker's story, that he is in Canada, where social services are much more advanced than they are in the US.

When reading his story and how he received so much help from the government relatively easily and efficiently it could lead some to believe that that is the way it would work in the US and it's not.

In the US we have waiting lists for ADAP and it takes lots of effort and usually having to hire lawyers in order to get on disability if one had to go that route.

Offline Dale Parker

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Re: Here is my story- and yes, I'm scared. Advice always appreciated.
« Reply #9 on: October 27, 2009, 12:23:56 PM »
Thanks for mentioning that I'm in Canada. I've been doing some checking with others about the support programs. Even though I had a lot of stress I really had an easy time of it compared to others in Toronto.
I really think, now that I have time to think, that most of my success with getting financial and medical help was by mentioning ALL my problems to EVERYONE. 
Seriously. I got a lot of great advise from places that I least expected it.  Although I hate to admit it publicly, real tears often helped in getting rules broken and shortcuts taken.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

 


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