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Author Topic: Came down with PCP, diagnosed in the hospital...reeling...  (Read 34777 times)

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Offline dolcevita08

  • Member
  • Posts: 26
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
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline dgr20002

  • Member
  • Posts: 288
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #1 on: April 18, 2008, 09:07:12 PM »
Tim,

Gosh that is a lot to digest all at once. It's good you are feeling better and while your CD4 is pretty low hopefully you will rebound once you start therapy. There is no sugar coating to put on any of this so you will just have to get well enough to get out of the hospital and next when you are out you will need a HIV specialist to talk to you about your med choices possibly a resistance test etc.

It's a shame the DR made the announcement the way he did but then again you don't have to anguish over telling your family like so many people do. It may be a blessing in disguise. It's also great that you have access from the hospital as you have so much to learn and digest and you are on the best site I know for information and helpful advice.

Welcome to these forums and there will be plenty of support coming along in no time.

Wishing you all the best,

David

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #2 on: April 18, 2008, 09:08:56 PM »
Welcome to the forum, and I'm sorry that you found out about your HIV that way.  I don't have any practical advice for you, except maybe to have a heapin' helpin' of potatoes at every meal.

Meds do a good job of knocking down the virus, so once you get through this crisis you have a very good chance of resuming a normal life.  Don't worry about side effects; not everyone has them, and you can always try a different regimen if you do.  Good luck and get well.  
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #3 on: April 18, 2008, 09:44:03 PM »
Hello Tim

I also found out when I was in the hospital with pneumonia.  My CD 4 count was 40.  The story is posted in my first thread here
http://forums.poz.com/index.php?topic=18369.msg233363#msg233363

I hated the hospital and couldn't wait to get out -- it was my third bout of pneumonia in two months and the antibiotics I was on came with wild hallucinations (I'm still not sure whether a murderer died in the room across from me -- but I'm pretty sure the cops in purple uniforms who took stances like the Ghost movie were not real).  It is almost two years ago now, but its still quite vivid -- I wish you all the best in there, and hope you can get out and onto HAART soon.

My sig line shows the numbers -- but what it doesn't show is that, on the whole, side effects have been minor.  Stamina -- well I don't have quite the stamina I had before, but lots of people start to slow when (like me) they hit their 50's.  So be of good cheer, the future is probably brighter than you think.

That said,  for right now, you probably need to focus on one day at a time.  If you focus on that day's healing and get on meds that fight the virus, healing may be faster than you think.

Welcome to the land of Lazarus (and to these Forums)

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 thunter34

  • Member
  • Posts: 7,255
  • His name is Carl.
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #4 on: April 18, 2008, 09:55:39 PM »
Some beautifully stated posts above.  Bravo to you folks.  You show what this site is all about. 

Tim,

Bedside greetings from another Tim.  I know - I know - this is a lot to absorb right now.  And yes, it was kinda lousy for that anouncement to be made right there in front of your Mother.  But like David said, at least you can automatically have someone else in your corner perhaps. 

And we are in your corner.

And yes, it is possible for you to get back to your energetic self again.  I'm an example of that.  My count was 89 and falling when I started.  I am at 457 and climbing now.  And I have just started a new combo (Reyataz & Norvir with Combivir) and feel better than I have in ages.  In fact, I'm getting on people's nerves with my energy lately. 

You've got tons of questions, no doubt.  And this place has tons of answers.  And tons of love to share.  I've experienced it first hand.  Chin up, son.  You've found first rate information and support. 

I am sending you a PM.  You can respond to it if you have some other questions that I might be able to help you with.

Stay strong.

Tim
AIDS isn't for sissies.

Offline leatherman

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  • Posts: 5,926
  • Google and HIV meds are Your Friends
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #5 on: April 19, 2008, 08:38:47 AM »
although I'm in the middle of a crisis right now in my life, I saw your thread and thought I should say something encouraging to you.

Just a little over 11 yrs ago (4 yrs after my partner passed away from AIDS), I thought I had the flu; and ended up in the hospital for 5 days with PCP (cd4s were 6 and viral load was 690,000) . I was so sure it was going to be the end; but I pulled through! Back in 1996, the meds were just starting to get "better" and my second regimen (I had been diagnosed with HIV at the end of 92 and only on AZT monotherapy) was a total of 32 pills! Of course it took a while to recover - it was a whole month before I had enough strength to climb the stairs to the second floor to sleep in my own bed once again.

But recover, I did. Over the last 12 yrs, I gone through a lot of regimens, had a lot of ups-and-downs, my tcells have only been over 300 one time, and it took me 10 yrs to reach an undetectable viral load; but with even better meds now, I have to say I'm the healthiest I've been in probably 20 yrs.!

So when you get out of the hospital, just take it slow and easy. Take your meds and learn all you can to take control of your health now. There is a lot you'll deal with mentally and emotionally when you get back home; but never lose hope. Treatments are much better today; and you'll find plenty of support from the great people here.

 ;) mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline dolcevita08

  • Member
  • Posts: 26
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #6 on: April 19, 2008, 10:59:50 AM »
I want to thank you all for your kind words of encouragement and sharing your stories. It really helps to hear from others who have experienced a similar situation. My spirits are pretty good today, all things considered, and I am finally feeling human again after this bout with PCP. I am hoping to get discharged today--my energy levels are up and I see the regular me slowly creeping back in.  I obviously still have a lot to deal with but am trying to keep a positive outlook.

Also, thanks to the few of you who have sent private messages. For some reason, I am having trouble responding to them on the site. There doesn't seem to be a way for me to do it.  As soon as I figure out how, I will reply because I would enjoy chatting privaely more.

Thanks again everyone! It means a lot.

Tim
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline thunter34

  • Member
  • Posts: 7,255
  • His name is Carl.
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #7 on: April 19, 2008, 11:02:13 AM »
dolce,  respond to this post.  just say anything...."blah blah blah" will do.



/Edit:  You have to make something like 3-5 posts before this site allows you to PM.  It helps protect us from spammers and trolls./
« Last Edit: April 19, 2008, 11:04:21 AM by thunter34 »
AIDS isn't for sissies.

Offline J.R.E.

  • Member
  • Posts: 6,970
  • Joined Dec-2003 Living positive, since 1985.
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #8 on: April 19, 2008, 04:16:17 PM »

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..


tim

As far as I'm concerned, that doctor violated your rights under HIPAA. He should have had your mother, and everyone else in the room leave, before he discussed anything with you, unless you unknowingly gave him permission.

But lets move on, Your going to have to take pretty good care of yourself for while. I know the feeling to have a low t-cell count. I was as low as 16, back in 2003. The last blood test in January t-cells were at 303. Your going to have a little road to recovery.

As leatherman has stated, you need to take it easy for a while, once your released from the hospital. Make sure to take you medications on time.

If you haven't had a chance, make sure to read the lessons. Take your time :

http://www.aidsmeds.com/articles/YouAndYourDoctor_4703.shtml

Stay in touch, and let us know how things are going.  I know it's rough right now, but it will get better. You just need to hang in there !! When you get the viral load counts, let us know.

This is also the time to get a notepad, and any questions or concerns that you may  have for your doctor, make sure to write them down, so that they are at your fingertips. It's important to do this.


Take care----Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline dallas4chris

  • member
  • Posts: 1
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #9 on: April 19, 2008, 05:53:49 PM »
Tim~

Sorry that you had to go threw that.  It sounds like my story and I was not even out to my mother.  Well if by being out means saying it out loud.  LOL  I do feel for you and to tell you the truth let some of it sink in.  I read everything that was put in my face and it was not good for me (I know that everyones mindset is different) but I could pick up some literature and I had everything that was wrong, symptoms, the worst of the worst of any article that I had read It was like tell me what you see and the bad words would pop out.  My doctor would finally put things that he wanted me to read sealed up and would tell me to read it later.   I wish you the strength to get threw this and I honestly can tell you I know what you are going threw.  Keep your chin up and this too will pass. You will get threw it, I did.  Find someone that is close to you and talk, get it out.  That was one mistake that I made.

Christopher~http://


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 responds in fact getting worsen 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

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,639
  • Diagnosed + 1989
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #10 on: April 20, 2008, 10:36:27 AM »
Wow, Tim.   A lot to deal with. 

Like others have said, rest, rest and rest.  Take your meds, and be good to yourself.  There are a lot of things to do when your energy gets up a bit.  I had a CD4 count of 3 years ago, but with the right meds and avoiding all the bad things you were taught to avoid as a youngster, I'm still around, years later.

Find a good doctor who specializes in HIV.  Seek out your local ASO (Aids Service Organization).  They can put you in touch with a doctor who will be right for you. And, should the time ever come that you need some sort of public assistance, they can sort that out for you.  They might even have a support group you would like to go to. 

As for what the doctor did in discussing you having HIV in front of your mum, I agree with Ray.  He did violate the HIPPA laws.  But, maybe that will take away your mulling over when to tell her etc. and she will perhaps be a ton of support for you.  Most mums are like that.

Good luck to you, keep your chin up and all that.  We're here for ya.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline dolcevita08

  • Member
  • Posts: 26
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #11 on: April 21, 2008, 10:15:42 AM »
Hi Everybody,

Thanks again for all your words of support. I am now out of the hospital and feeling a lot better, still not 100& but on my way.  I am planning on returning to work on Wednesday.  Tomorrow I meet with my ID doctor to determine my treatment regiment for the HIV--which given my low CD 4 count we will start very soon.  My spirits are pretty good, especially because I am getting back to normal. There were nights in the hospital I wasn't sure if I would ever feel right again.  One of my main concerns is gaining the weight back that I lost in the hospital. I lost twenty pounds! So, I am downing protein shakes left and right and eating all the high calories stuff I always use to avoid.  I have faith that I will be fine.  Thanks everybody for helping me through this difficult time.

Chat soon.

Tim :-)
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline Miss Philicia

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  • Posts: 23,581
  • celebrity poster, faker & poser
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #12 on: April 21, 2008, 10:34:49 AM »
20 lbs lost isn't odd for what you've been through.  You'll gain it back, it will just take a bit of work and time.

Glad to hear that you are out of the hospital.
"I’ve slept with enough men to know that I’m not gay"

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,639
  • Diagnosed + 1989
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #13 on: April 21, 2008, 02:53:41 PM »
Tim, so glad you're on the mend, so to speak.

Like Philly said, the weight loss isn't surprising.  I would be more surprised if you had maintained your weight, given what you've gone through.  Protein shakes are an excellent idea. 

Let us know how it's going.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline J.R.E.

  • Member
  • Posts: 6,970
  • Joined Dec-2003 Living positive, since 1985.
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #14 on: April 21, 2008, 07:57:33 PM »
Hello Tim,

Glad to hear back from you. Just to repeat what Philly said, you'll get that 20 pounds back in no time. I also drank Boost daily back in 2003 when I had lost 30 pounds. I still drink an occasional boost today. Some don't like the taste of it. I don't mind it, especially the chocolate. Make sure to get some good solid food into you also.


Take care of yourself-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline dgr20002

  • Member
  • Posts: 288
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #15 on: April 21, 2008, 08:31:12 PM »
I also drank Boost daily back in 2003 when I had lost 30 pounds. I still drink an occasional boost today. Some don't like the taste of it. I don't mind it, especially the chocolate.

I 2nd this statement. I used to mix boost with whole milk in the blender. It has gotten expensive. Look for the sales and stock up. I liked all of it but the strawberry. That used to give me the trotts but vanilla and chocolate were great.

David

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #16 on: April 21, 2008, 09:24:50 PM »
Yes the weight does come back as you get back in the swing of things.  Going back to work Wednesday is really very fast from pneumonia in the hospital -- make sure you give yourself enough time to rest Things will keep going on at work even if you need a little more time to recover.

Get strong!
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 Winiroo

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    • http://winiroo.synthasite.com/
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #17 on: April 21, 2008, 10:14:39 PM »
I'm glad you found this site. A site like this would have been very helpful to me when I was first diagnosed.
I'll try not to repeat what the others have said in posts prior to me but from what I have read above it is all very good suggestions and information.
I'm curious how your Mother is taking the news and if she is getting educated on HIV. I hid my diagnosis from my family for a year before some snooping from my brother brought me out.
My family was scared at first and though they tried to act the same with me it took some of them a couple of years before they acted completely normal around me.
Learning you are positive is quite a shock. I'd suggest you learn as much as you can about the virus. Try not to stress too much because stress can and will make you sick.
You could Google Infectious Disease Doctors and the city you live in to get an idea of doctors in your area. As far as work goes most people find it helpful to continue their regular routine. But I wouldn't suggest you tell anyone at work your HIV positive.
Your local ASO or resource center likely will have a class to help learn more about HIV. Here where I live I think they call it HIV/AIDS 101. And there are usually support groups and or social groups too. It depends on how big of a city you live in really.

If you have any questions please let us at AIDSmeds know and we will do our best to help you out.



http://cmd.shutterfly.com/commands/pictures/slideshow?site=winiroo&page=winiroo&album=21
“Being powerful is like being a lady. If you have to tell people you are, you aren't.” Margaret Thatcher

Offline dolcevita08

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  • Posts: 26
Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #18 on: April 22, 2008, 06:37:43 PM »
Hey Everybody-

Just saying hi and giving an update.  Well, it was a beautiful spring day here today and one nice thing about returning home to my house was to find all the flowers and trees blooming that were bare before I went into the hospital. 

Today was kind of a weird day for me.  I have been relatively upbeat since the diagnosis and the PCP is clearing up nicely--I feel so much better than I did and had a full day of running around today without getting tired.  I went to the ID doc today and he was happy about my PCP clearing up (he said it was quicker than he expected) and then we started to discuss HIV treatment options. He wants to start me next week on meds. My VL came back at 99,000--and a CD 4 of 39. He said though that my CD 4 level was probably a bit lower because of the PCP and he wants to retest next week.  He presented several treatment options to me, one using Sustiva--which I am wary of given the dreams/CNS effects---the other is a combo of Truvada, Reyastaz, with a Norvir Boost--which i think I am leaning towards.  Does anyone have any input on the meds?  Luckily, I have good insurance so the med cost will not be an issue at this time.  I also got connected with my local ASO, which I was very familiar with because I have volunteered there for years and will meet with a case manager next week. 

This afternoon though after I left the doctors I was very depressed, I tried to fight it and think positive but I found myself in an unhappy bitter daze and not wanting to interact with anyone including my close friends and family (Ihave never been a depressive person). I imagine its all because this is starting to sink in and my brain is trying to process it all.  I hope this low feeling will pass soon.  While I would never harm myself, I even found thoughts of suicide creeping in. I know I would never do it but it disturbs me that the thought even crossed my mind this afternoon-it never has before. 

Thanks for letting me ramble and for all your support. It really helps me to share this with others because at this time I am not sharing this information with anyone in my personal life.

Hanging on,

Tim
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline BlueMoon

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #19 on: April 22, 2008, 06:56:32 PM »
Quote
. . .the other is a combo of Truvada, Reyastaz, with a Norvir Boost. . . .

That's my combo and so far it's worked well for me.  After twenty days my viral load was down to 5,200, from 273,000.  I've been on it for two full months now and no problems at all, save for some skin yellowing for a few days.  I'm looking forward to my next blood test in about five weeks.

Try not to let things get you down.  It's true that you have a hard road ahead of you, but it can be done.  You are fortunate to have good doctors, good insurance, and live in a time when medication can make a real difference in your life.  Ramble here all you want.     

...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Winiroo

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #20 on: April 22, 2008, 07:55:36 PM »
the other is a combo of Truvada, Reyataz, with a Norvir Boost--

This is also the meds I am currently on. Within a month of starting my viral load went from 750,000 to undetectable.
I've had some nausea but I am not sure it is from the the meds. I also had some yellowing of the eyes briefly from the Reyataz.

I take one of each once a day. Its a handy combo since it is a once a day regimen.
I chose to take it at night right before bed with the idea that I would sleep through some of the side effects. Not sure if that is realistic but it was an idea I had and I've stuck with it.
Initially I had trouble with the Norvir feeling heavy in my stomach. It is a refrigerated capsule, slightly big. The suggestions I got was to take the pill with a warm beverage like coffee tea or cocoa. I did that for a while but now I don't need to.

I read an interesting column in my local paper about Truvada not terribly long ago. It was a research experiment on Truvada and mice. I'm not a mouse but it was an enlightening read. I found aegis.com had posted a copy of the article in case anyone else was interested in reading it the link is posted below.

http://www.aegis.com/news/dmn/2008/DM080101.html


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Offline Miss Philicia

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #21 on: April 22, 2008, 08:06:18 PM »
If I was newly diagnosed, I think I'd definitely pick they Reyataz combo.  What's a few days of yellowing?  It's not like it's long term.  And while there are many, many patients who tolerate Sustiva well there are large numbers who do not.  Might be good to reserve the Sustiva combo for later down the road.

fyi:  you don't need to refrigerate your Norvir as long as the room temperature is less than 77F for a one month supply.  If you order in 3 month blocks you need only store months 2 and 3 supply in the fridge, not the one you are using.  Read the label.
"I’ve slept with enough men to know that I’m not gay"

Offline dgr20002

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #22 on: April 22, 2008, 10:10:25 PM »
Thanks for letting me ramble and for all your support. It really helps me to share this with others because at this time I am not sharing this information with anyone in my personal life.

Tim I am so glad you are feeling better and getting stuff done and deciding on meds. I hope your Mom is doing OK. She is going through this too. Just ask her how she is because she may be feeling down and have questions too. Especially about the DR visits and the strategy.

All the best,

David

Offline Assurbanipal

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #23 on: April 23, 2008, 12:07:30 AM »
This afternoon though after I left the doctors I was very depressed, I tried to fight it and think positive but I found myself in an unhappy bitter daze and not wanting to interact with anyone including my close friends and family (Ihave never been a depressive person). I imagine its all because this is starting to sink in and my brain is trying to process it all.  I hope this low feeling will pass soon.  While I would never harm myself, I even found thoughts of suicide creeping in. I know I would never do it but it disturbs me that the thought even crossed my mind this afternoon-it never has before. 

Hang in there Tim

You've been through an awful lot in the last couple of weeks and its quite common to have some mood swings as one adjusts to all the new information and issues to be dealt with.  Don't be afraid to ask your doctor for help with a referral as well.  And if you have a caseworker, you may want to talk through options for support groups and referrals as well.

All the best
A
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 jcmiami

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #24 on: April 25, 2008, 12:01:33 AM »
All I can say...been there, done that! I was diagnosed with "full blown AIDS" a little over one year ago. My scenario was just like yours: 1) I was totally clueless 2) I had PCP and thrush while in the hospital for over 3 weeks. After all the tests I found out I had AIDS and if it wasn't for the PCP...I would have not a clue. Today I am doing great! One year ago my CD4 was 21 and viral load was over 800,000!!!

Offline dolcevita08

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #25 on: April 25, 2008, 02:49:20 PM »
Glad to hear you are doing well JC!

I am beginning to wrap my head around it.  I actually feel pretty good physically now considering how sick I was.  I am back in my normal routine which I am happy about.  Starting meds next week so hopefully my CD 4'S will rise soon. :-)  I think in my heart of hearts I knew I was most likely positive for a while but just like you if it hadn't been for the PCP I would have had no idea I was walking around so sick (even though I felt great)-- Anyways, I am just happy to have made it through so now I can start taking care of myself and the disease.  Jus t out of curiosity--what combo are you on?

Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline cobraalfa

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #26 on: April 28, 2008, 11:26:58 AM »
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....


Hi Tim,

Be welcome to here. My name is Marcos, from Brazil, recently diagnosed too. Don´t feel so sorry about being probally 'infected for several years and was in denial and in doing so wreaked havoc on my own health...'. Things happen when it´s to happen. Don´t stuck on past! What is important is that we all are been diagnosed in a time when there are these very effective meds. Also important is that you can help others, warning them about the importance of the earliest diagnosis. The fact that you are a guy who works out and aparently has a good life style, and good support from your family really count a lot. You are better prepared to the treatment. Good treatment to you.  Keep in contact here because this place is a revolutionary way of getting faith, sharing experiences (thanks for reporting yours), and gaining strengh to face it better.

I really wish you the best.


Marcos,

Wishes from Brazil.




Hi, I'd like to share my experience

Offline BubbaPat

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #27 on: April 28, 2008, 05:38:15 PM »
Howdy Tim,

You sound like you're in the situation I was in when I got my first and so far only bought of PCP.

Personally, I CRAVED spaghetti and ravioli and just about any other pasta dish you could think of.  My partner would bring it in to me when he got off work.  The nurses were extremely jealous but they also knew I has a looney young doctor who was focused on putting the lid on my coffin more than putting me back into Life.   But hey, that was EIGHT years ago.  I'm still here and don't have any plans of leaving anytime soon.

I think part of it was a mental thing.  I had a fond memory attached to those pasta dishes which helped me through it.  I'll send you a personal e-mail to tell you more, plus you should be able to access my web page through my profile.

BUBBA HUGS!!!  Getter better soon!
Patrick

Bubba hugs!
Patrick

Offline dolcevita08

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #28 on: April 29, 2008, 02:52:18 PM »
Hey Everybody!  :D

I am happy to report that I am doing well.  Going back to work and getting back into the groove of my normal life has helped my spirits immensely.  I took it pretty easy over the weekend but went out for dinners and brunch with friends--it was great to be social again.  The PCP is all cleared up and I have gained 12 of the 20 pounds back so far. I have a little shortness of breath when I exert myself a lot but it doesn't prohibit me from doing anything and the doc said it would take a little while for that to go away.

Went back to the doctor today and he prescribed my regimen-Truvada, Reyataz, Norvir. I am going to start tomorrow--hopefully there won't be any side effects that I can't handle.  I am ready to go forward, full speed ahead and start knocking this nasty little virus down. They also took more blood to get a more accurate CD 4 and Viral load count--he feels the initial one-taken in the midst of the pcp might not be wholly accurate and that my CD 4's might actually be higher now. 

Anyways, thanks again for all your support--it means a lot.  I have loved hearing from all of you.

Tim :-)



Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline BT65

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #29 on: April 29, 2008, 03:13:29 PM »
Tim, so glad to hear about this upswing.  Good luck!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online anniebc

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #30 on: April 29, 2008, 06:14:25 PM »
Hi tim

I'm late to the party as usual but I just wanted to say welcome and I'm glad to hear you are feeling much better.

I can't really add to what the guys had already said, you have been given some good advise and they will always be here to support you.

Everyone reacts different to their diagnosis, but over time you will find a way of dealing with this in a way that suits you, just remember that being HIV does not stop you from being the the man you were before you knew your status..it's not always easy and it can take time..but eventually your good days will out weight the bad.

Stay strong and remember if you are having a good day, a bad day or just want to vent then this is the place to do it, they guys will always be here for you, trust me, you can rely on their support.

Hugs from NZ
Jan :-*
-----------------------------------------------------------------------
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Offline energyboi

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #31 on: April 30, 2008, 10:32:54 AM »
Hey there Tim,

Keep your spirits up. I was in the same situation last summer lost almost 50lbs and I am norm only 145-150 I have gained it all back. But have to say that I have learned a lot in the last year on alternative things link reiki, meditation, etc. I can say that the meditation Cd's I received were a great help in getting me geared toward LIVING with this. It is so important to take time for you and its a easy and great way to do so. you can contact me if you want me to share where I got them.

I say this to you and everyone its something I channelled from spirit.

Don't let a situation in life be it a everyday trial or dis-ease become who you are. Stay steadfast and Strong in your journey though life and the abundance of peace in inevitable!

Peace love and light to you Tim, and all who read this
Energyboi

Offline BT65

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #32 on: April 30, 2008, 10:43:03 AM »
Welcome to the forums, energyboi.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline dolcevita08

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #33 on: April 30, 2008, 06:22:13 PM »
Hi enerygboi-thanks for posting and welcome!

Bettytacy--love your pic by the way of the "give-a-fuck-ometer"-I think I need one installed in my office..lol

Question--with the combo I am just starting (Truvada,Reyataz, Norvir)--there is a chance of experiencing some yellowing due to increased billirubin levels--has anyone had any experience with this and how was it for them--slight--or really banana yellow ridiculous? I know it varies from person to person and have read other posts on the site on the topic but wanted to see if anyone had anything else to add about that...

Tim
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline Winiroo

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #34 on: April 30, 2008, 06:30:29 PM »
My eyes where yellow for about a week. No one noticed but me unless I pointed it out. Even my boyfriend.
And I might add the prodominant feature on my face is my eyes.


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Offline energyboi

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #35 on: April 30, 2008, 10:41:44 PM »
I have been on a few combos since last summer being diagnosed with pcp. I became severly anemic because of dapsone but as far as the three you are on I started those about 4 months ago and i have had little side afftects from them other than a rash. This combo has been a lot easier on my stomach than the others were but still causes havoc at times!

Peace love and light to all who read this!

Offline dolcevita08

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #36 on: May 12, 2008, 02:20:06 PM »
Hello!

I started my meds (truvada, reyataz, norvir) and have been taking them for several days now--I delayed starting them for several days after filling the prescription (I am guessing it was a mental thing). I am pleased to report that I have had very little in the way of side effects yet (knock on wood!). The only thing I have noticed is a very slight yellow tint in my eyes--but its barely noticeable at all.  Thank you for all of your input.  Other than that, things are going well--I have segued back into my life pretty easily and I am very pleased to report that I have gotten my weight up back to where it was pre-PCP--which was a big deal for me. Now the numbers game starts, I am very curious to see how my body aand the virus reacts to the meds.  Headed back to the ID doc again tomorrow.  Chat soon. :-)

dolce  ;)
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline J.R.E.

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #37 on: May 12, 2008, 07:00:35 PM »
Hello!

I am pleased to report that I have had very little in the way of side effects yet (knock on wood!). The only thing I have noticed is a very slight yellow tint in my eyes--but its barely noticeable at all.  Thank you for all of your input. 
dolce  ;)



It's good to hear back from you. Also glad to hear that things are going much better for you. Wishing you the best at your doctors visit tomorrow. Make sure that if you have any questions for the doc, to write them down.  It's too easy to forget things at times.


Good luck/ Keep us updated-------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

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http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline BT65

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #38 on: May 12, 2008, 11:27:14 PM »
Dolce, I'm glad things are going better.  Take care of yourself and please let us know how things are going.
   Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline dolcevita08

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #39 on: May 13, 2008, 04:17:47 PM »
Hello again-

My doc visit went pretty well.  My numbers are actually better than the initial set they took when I had PCP --my cd 4 is at 80 (not great but a lot better than 34) and viral load at 99,000.  He was pleased with my progress and the fact that I have had minimal side effects. i go back in a month for my first post-meds blood test.  Its amazing how I have bounced back mentally and physically from the place I was less than a month ago--I was so low at that point I didn't think I would.  Anyone who is in the same boat,  please know its gets better!

Much love,

dolce :-)
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Online Andy Velez

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #40 on: May 13, 2008, 04:39:35 PM »
It's good to know you continue to be on in upswing mode, Dolce. Now that the crisis period is passing you can breathe and continue getting adjusted to this new part of your life in a less anxious fashion.

Remember you're always welcome to discuss anything that's on your mind and to ask questions. You may also find it useful to keep a little pad and pen handy for noting down questions or other matters so that when you have an appointment with your doctor you don't have to depend on your memory to recall everything you want to ask.

Great to see you doing so much better.

Cheers,
Andy Velez

Offline BT65

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Re: Came down with PCP, diagnosed in the hospital...reeling...
« Reply #41 on: May 14, 2008, 06:44:25 PM »
Dolce, so glad your health is improving.  Good luck with your next round of labs and please keep us posted.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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