Author Topic: Tested + for HIV, diagnosed with PCP and AIDS... (Read 41408 times)

NKB · « **on:** April 12, 2015, 08:00:48 pm »

Hi,
My girlfriend, just-hopeful, introduced me to this forum and I am wanting to share my story/get advice/input/etc.

On March 22nd, I was diagnosed with AIDS due to me developing PCP. I had no idea I was HIV+ until this day. I am a heterosexual male. I have been with the same partner for the past 4 years. I had been in the hospital from March 22nd-April 3rd due to the PCP. I was told that my CD4 count is 6 and my viral load is 12 million. I am currently on oxygen 24/7. My oxygen level drops any time I exert myself minimally. (like walking from the bedroom to the bathroom) My HIV doctor started me on Stribild last Tuesday April 7th - (I've taken my 6th dose of it today). I am also on Bactrim, Prednisone, and Levoquin for the PCP.

I have been running fever on and off getting up to 102. I am continuously coughing up thick white mucousy material.

How long do you think with my numbers it will take me to get better? Or even to a better state where I am not needing oxygen to get around (be able to breathe easier/unassisted)?

As my viral load drops will I start feeling a little better or is that more dependent upon the CD4 count?

I feel like my PCP recovery is pretty stagnant and does it really just take that much time to get over it?

Thanks for reading and any advice would be really appreciated.

Here is her original post: http://forums.poz.com/index.php?topic=58378.0

zach · « **Reply #1 on:** April 12, 2015, 08:43:04 pm »

hey man, i've been hoping you'd post

glad you have the strength to now, that's progress no matter how small

first, sorry you're here, but pleased you're in care, have such strong support, and have found this place

i'm sure you've read the thread that she started, everything i and others said there still very much applies

i want to reassure you, now that you're on haart meds and antibiotics things will improve

but it will take time

no one here can promise you a timeline, the truth is you are very ill. it will take time, but it will improve. you won't wake up and suddenly feel better, but a day will come you look back and realize you're improving. i can tell you this, some us of here began with single digit cd4 counts same as you.

i've been there twice now. a year ago, i was in hospital with numbers where you're at now. it was a tough time for me, this group was a rock for me. i didn't really start to feel vital again for months. now, i push myself too hard, i'm not 100% but i'm pretty convincing at faking it.

my advice, rest, be patient. take care of your body and your mind. go slow. take your meds religiously. learn what you have to, but don't drown in information. get to know your medical team, like family.

you will feel better, you will beat this back, you will learn to live with this. believe that, and believe in yourself.

and go hug that girlfriend of yours, she's a strong woman, it's good to have a partner by your side through this fight... i envy you that.

i could keep rambling on here, but thats the pep talk i have right now. again, welcome to the party. you're both welcome here, come and vent, rage, chat, whatever you need to do.

hang in there ok

leatherman · « **Reply #2 on:** April 12, 2015, 09:33:54 pm »

Quote

i want to reassure you, now that you're on haart meds and antibiotics things will improve
but it will take time

Hang in there nzb, zach is dead on the money.

I've been in the hospital twice with PCP. Viral load in the millions, and cd4s down to 5. And while recovery was a bitch of a time, and took forever, I did just celebrate 17 yrs since I was last in the hospital.

Since then I've hardly been ill with even the sniffles.

Quote from: NKB on April 12, 2015, 08:00:48 pm

(like walking from the bedroom to the bathroom)

wow, does that take me back. After I got home from the hospital, I had chairs stashed all around the house. I would struggle from one to the next. Trekking from the living room to the kitchen was a chore. thank god there was a microwave in the kitchen or I would have starved. god knows just getting to the kitchen took all my energy and I could have never stood over a stove. But it was better than the day when I went into the hospital with my o2 levels so low that I couldn't even lift my head. it took 30 days before I was able to finally get up the stairs to my bedroom - and my beloved water bed! - on the second floor.

Time. it'll take time. You'll come to hate being "half sick". Until one day when you realize you aren't even half sick and you've been doing a lot better.

That day will come; but you're going to have to stick to the meds, keep away from the germs for a while, drink lots of fluids, eat well, and rest. Oh and think (pardon the pun) positive thoughts! Trust me, after living 31 yrs with HIV, a positive attitude and meds will be what gets you through the best and worst of times.

mecch · « **Reply #3 on:** April 12, 2015, 09:42:22 pm »

Welcome here I'm glad you joined.
Are you mostly sleeping now? What do you do when you're awake? Do you have a computer in hospital, or TV, or music or books or what. I guess you're pretty wiped out however.

bhamrichard · « **Reply #4 on:** April 12, 2015, 10:12:16 pm »

Quote from: NKB on April 12, 2015, 08:00:48 pm

On March 22nd, I was diagnosed with AIDS due to me developing PCP. I had no idea I was HIV+ until this day. I am a heterosexual male. I have been with the same partner for the past 4 years. I had been in the hospital from March 22nd-April 3rd due to the PCP. I was told that my CD4 count is 6 and my viral load is 12 million. I am currently on oxygen 24/7. My oxygen level drops any time I exert myself minimally. (like walking from the bedroom to the bathroom) My HIV doctor started me on Stribild last Tuesday April 7th - (I've taken my 6th dose of it today). I am also on Bactrim, Prednisone, and Levoquin for the PCP.]

Your story is nearly identical to mine. I was admitted to the hospital emergency room with PCP, three years ago, nearly to the day today. Like you my CD4 could was 5, and VL was off the charts. I also was given Bactrim, Prednisone and Leviquin, which took several days (like 5) before they were much help. I can tell you the first few days, I could not get out of bed. Even my severe stubbornness would not move me. Though I admit after three days of laying there, I insisted on being able to shower. That was the longest 10 minute standing of my life it seems. It was my first realization just how weak I really was.

Your lack of energy is unlikely to be related to your CD4 or VL counts. PCP Pneumonia fills the lungs with crap, causing a severe drop in your oxygen levels in your blood, which causes the weak/tired/fatigued feelings your experiencing. I know coughing crap up sucks, but don't try to stifle it. The sooner you can clear your lungs and reduce the inflammation (thank you Prednazone) the sooner your oxygen levels will return to normal levels and you'll begin to feel much much better.

Quote

I feel like my PCP recovery is pretty stagnant and does it really just take that much time to get over it?

Yes... Yes it does. Once you clear, or mostly clear the crap from your lungs, you'll begin to feel much better. Don't fight the oxygen that your on (I kept taking mine off, and my nurse wasn't happy!) it's really helping you more than you know.

You know it's also possible since you just started Stribild, your feeling some side effects of this new medication. When the PCP clears up, and you get used to the Stribild, you should feel soooo much better. Two weeks would be my best guestimate if all goes well. (No, I am not a doctor, just been there is all)

Quote

I was diagnosed with AIDS due to me developing PCP

I'm not sure how big you are on your 'personal privacy', but for the record, you had pneumonia, you don't have to disclose to anyone it was PCP.

Last thing I should mention that you may want to ask your doctor about, since your immune system is so depressed, IRIS (Immune Reconstitution Inflammatory Syndrome) is a possibility when the Stribild has a chance to kick the HIV in the groin awhile.

Essentialy, IRIS is what can happen, as the immune system starts working again likes its supposed to. There is a potential that you could be infected with something else, common cold etc etc, when the immune system gets to a point where it's working sufficiently to detect any other foreign invaders, it kicks into over drive. *IF* that happens, you may need more prednizone to counteract the inflammation that can occur while the immune system is kicking butt. The get out of bed tunnel is a lot shorter than you think. Hang in there man!

Tonny2 · « **Reply #5 on:** April 13, 2015, 02:37:43 pm »

ojo NKB, hello and welcome...recovering from PCP, it will take time, so, rest and relax....your meds will have to take care of the virus first, so, I don't think that you will see an increase of cd4 anytime soon, but as long as your viral load starts to come down, that will show your pprogress....when I had my cd4 in the 20s, my doctor recommended me to drink destilled water, to prevent cripto, I don't know if that sounds like a good idea for you or the rest of all, who have had low cd4s....wishing you the best and keep us posted, you are in the right place for support and information...hugs ojo

2tcells · « **Reply #6 on:** April 16, 2015, 04:21:41 pm »

ya that pcp sucks I remember how hard it was to get to the bathroom from the bed which is like 10 steps but felt like I had run 5 miles I was so weak from not being able to eat also. most times I just stayed in the bathroom for an hour resting to get back to the bed lol. my cd4 was 2 viral load a lot lower than yours 220,000 after starting meds I felt a ton better in about a month and was eating nonstop. like you im a straight guy with gf had no idea why I was so sick for months and just getting worse then went to the hospital I was very surprised to find out it was aids I didn't ever consider that could be the problem. do u have trush also? or dry flaky red skin on your face?

leatherman · « **Reply #7 on:** April 16, 2015, 07:21:08 pm »

Quote from: 2tcells on April 16, 2015, 04:21:41 pm

do u have trush also?

thrush! the worst part. That was "THE sign" each time that I needed to go to the hospital. It was so bad for my first partner before he passed away, I often think it was the thrush, not PCP, that killed him. Ugh! but thank god for those mycelex troches!

NKB · « **Reply #8 on:** April 18, 2015, 10:31:21 pm »

Things seem to be going well. I had my appointment with my HIV doc on Tuesday. She said my lungs are sounding better. I have been running fevers daily though and this week I developed this horrible sore throat. Is this common for people in my situation? Is this one of those "other" infections that happens during the getting better process? Just wondering. It's absolutely awful and is making me not want to eat anything and compulsively spray my throat with chloraseptic spray. If this is something commonly developed by people in my situation, is there a way to alleviate the pain? Do I need to see my doctor about medicine? Any advice or guidance would be appreciated.

zach · « **Reply #9 on:** April 18, 2015, 11:16:14 pm »

honestly, if you're seeing your ID doc tues, i'd ride it out unless you can't breathe or start have convulsions... something epic and dramatic

yall seem really spooked by the ongoing fever, bring that up the doctor, but it's par for course

honestly, you're really sick man, i know it sucks... it's probably going to take months... that fever is a good thing, thats your body cooking those millions of hiv bugs to death, every time you cough up nasty shit thats your body flushing crap out

as much as it sucks, it sounds like your body is fighting... it's a very tough and grueling fight, and you're only in the first rounds

NKB · « **Reply #10 on:** April 19, 2015, 02:43:03 am »

Quote from: 2tcells on April 16, 2015, 04:21:41 pm

ya that pcp sucks I remember how hard it was to get to the bathroom from the bed which is like 10 steps but felt like I had run 5 miles I was so weak from not being able to eat also. most times I just stayed in the bathroom for an hour resting to get back to the bed lol. my cd4 was 2 viral load a lot lower than yours 220,000 after starting meds I felt a ton better in about a month and was eating nonstop. like you im a straight guy with gf had no idea why I was so sick for months and just getting worse then went to the hospital I was very surprised to find out it was aids I didn't ever consider that could be the problem. do u have trush also? or dry flaky red skin on your face?

Yes. I was told I had psoriasis and that is an early sign. I had no idea that was a sign. It started on my scalp sometime last year then started to spread down my face and into my beard. I started to develop thrush in January/February. So yeah, our situations do sound very similar. I am at least now able to get to the bathroom and back without being AS winded/needing to rest.

Quote from: zach on April 18, 2015, 11:16:14 pm

yall seem really spooked by the ongoing fever, bring that up the doctor, but it's par for course

Yeah, the doctor told me before if it got over 100.4 to start getting worried. There are times where it has gone up to 102 but we've been able to get it back down after a while. But I guess if it's part of the process I'll try (and tell them) not to worry about it as much.

mecch · « **Reply #11 on:** April 19, 2015, 02:00:02 pm »

Hang in there. You're very strong in the head when your body is weak.
What are you doing to pass the time and distract yourself, calm yourself?

2tcells · « **Reply #12 on:** April 22, 2015, 05:00:03 pm »

ya that red dry flaky skin was my first symptom that started a year before I was diagnosed. it got a lot better after I got near 100 cd4 but I still have it on my mustache and chin. before it was all over on my eye lids, side of my nose, scalp, beard, other places not on my face. I suppose to go away around 300 cd4 I read.

also theres a thing called irus I think. its when your immune system is recovering to fast and makes you feel sick

leatherman · « **Reply #13 on:** April 22, 2015, 06:50:56 pm »

Quote from: 2tcells on April 22, 2015, 05:00:03 pm

ya that red dry flaky skin was my first symptom that started a year before I was diagnosed. it got a lot better after I got near 100 cd4 but I still have it on my mustache and chin. before it was all over on my eye lids, side of my nose, scalp, beard, other places not on my face. I suppose to go away around 300 cd4 I read.

also theres a thing called irus I think. its when your immune system is recovering to fast and makes you feel sick

often (at least 1/3 of the time) people find out, quite late in the stages of infection, that they are infected. These people often have immune systems that are so damaged (think <50 t cells) that their immune system is not responding at all to any pathogens. This means that even though a person might have been exposed to a cold, a virus, etc. their immune system doesn't respond. No response = no symptoms -- because your immune system isn't doing anything.

Then when people start HAART, HIV dies off, and their immune systems start to recover. their immune system might suddenly start to respond to all the bugs it wasn't fighting off, and the patient can be quite "sick". This situation is called "Immune reconstitution inflammatory syndrome" (IRIS) -- and it can really suck. So you've got a health problem and go to the hospital. You're diagnosed with HIV and start meds. A month or so later, you get really "sick", with all sorts of symptoms. The patient thinks "omg, the meds aren't working and I've got aids"; however, the crazy thing is this period of sickness happens because you are actually getting healthier and your immune system is actually working again

http://www.hivguidelines.org/clinical-guidelines/adults/immune-reconstitution-inflammatory-syndrome-iris-in-hiv-infected-patients/

fyi - IRIS (just like seroconversion illness, which happens when people are initially infected) doesn't happen to most people

just-hopeful · « **Reply #14 on:** April 22, 2015, 07:15:32 pm »

Just wanted to let y'all know - he was admitted to the hospital last night and is still there currently. He has had a high grade fever that won't break and a sore throat which is so bad he can't hardly eat anything and he's been running fever for so many days he's miserable. He lost 7 lbs in in the past week.

zach · « **Reply #15 on:** April 22, 2015, 07:29:15 pm »

strong healing vibes

yall hang in there

leatherman · « **Reply #16 on:** April 22, 2015, 08:29:07 pm »

get well soon NKB! this thread just isn't the same without YOU

mecch · « **Reply #17 on:** April 22, 2015, 08:40:29 pm »

Sorry to hear.

Jeff G · « **Reply #18 on:** April 22, 2015, 08:46:40 pm »

I new to this thread but want to add a belated welcome to the both of you and wish you a speedy recovery . HIV care has come a long way and the good news is there aint much they can’t fix these days . I want you to know that you guys are not alone and the forum has your back . Hugs .

DANIELtakashi · « **Reply #19 on:** April 22, 2015, 09:50:44 pm »

Greetings from TOKYO .
I got PCP one year ago and l know how hard it is.
Please take care.

2tcells · « **Reply #20 on:** April 24, 2015, 07:23:50 pm »

get well soon! any update on him? doing better I hope

just-hopeful · « **Reply #21 on:** April 24, 2015, 11:30:48 pm »

Quote from: 2tcells on April 24, 2015, 07:23:50 pm

get well soon! any update on him? doing better I hope

Quote from: just-hopeful on April 23, 2015, 07:16:19 pm

He was admitted to ICU today after his bronchoscopy. They said he was having problems breathing and wanted him to be where there was a less patient to nurse ratio, which actually brings me more comfort because when he was on the floor there were times we wouldn't see the nurse for over an hour. Plus his new nurse is very informative. We have our own O2 meter and otic thermometer and have a notebook where we have been keeping up with his vital signs - we were doing this at home when he was there but we have it with us in the hospital as well. So far he seems to be doing okay. They have him breathing with the assistance of a CPAP mask. They said they just ordered another chest x-ray and ABG. So...I guess that's the "update" I have for now. I'm using his computer to do work for my job so I doubt he will be doing any posting. Especially with him being in the hospital. I'll update as I can.

He's currently on a CPAP mask/machine to help him with his breathing. When he's on it his vitals are really good. When he's on the nasal cannula - not so much. He just feels miserable. They're giving him morphine for pain from the bronchoscopy. Around 11am he told me that a new doctor came in and said that it was probably going to take a while to clear. I'm assuming they are meaning the pneumonia. They said some labs should be in tomorrow. Not sure which ones and they said it could be up to 3 days before he feels the effects of the bronchoscopy. I'm assuming they mean the good effects of it? He has been saying that he just feels bad and is tired.

alex16178alex · « **Reply #22 on:** April 26, 2015, 05:41:54 am »

Sending my prayers to him, wish he get well soon
Be strong as he need good vibes around him!

zach · « **Reply #23 on:** May 08, 2015, 04:05:03 pm »

hey everybody, tim did this for me when i needed it

so i'm just spinning the karma wheel. jeez hospitals suck

y'all send more strong vibes, and some big congratulations!

i've been talking to just-hopeful (the partner) and they're still battling away in there, no quarter

nkb is going in into surgery today for a collapsed lung, i don't know details beyond that, but they'll try to keep us posted...

oh yeah... and they're engaged!!! she said yes and everything

zach · « **Reply #24 on:** May 08, 2015, 06:05:19 pm »

just bumping this with a subject line modification to draw some attention, last post got lost in the sea

mecch · « **Reply #25 on:** May 08, 2015, 06:13:29 pm »

I'll do my rituals tonight send energy vibes. Sometimes it comes down to life force energy and everyone who has to spare must send it now.

just-hopeful · « **Reply #26 on:** May 08, 2015, 06:37:48 pm »

The surgery is done. He now has a tube in his chest. He's in a lot of pain. They did not sedate him but used a local anesthetic as well as morphine and adavant. I watched the procedure and it broke my heart to see him in such pain. He's still in pain and very uncomfortable after it's all been done with.

Almost2late · « **Reply #27 on:** May 08, 2015, 08:41:59 pm »

Hoping that his pain subsides soon and wishing him a speedy recovery.

Tonny2 · « **Reply #28 on:** May 08, 2015, 09:37:14 pm »

ojo so sorry to hear he is in pain, he will get better...hugs ojo

Iceblubud · « **Reply #29 on:** May 12, 2015, 08:36:58 am »

Just sending tsunami waves of positive energy and vibes for healing and well-being to both of them....

richardhsmithson · « **Reply #30 on:** May 12, 2015, 06:07:52 pm »

Hey buddy,

Let me tell you my story. New years eve 2012, I began running a fever of 103. I thought it was the flu, and I dealt with it, I thought. In February I got sick again and I went to the doctor PCP and thrush. The oral HIV test cane back negative. I dealt with this until June 22, 2013. Fevers everyday, felt like crap, some days so hard to breathe. I had gotten so sick and I was so weak, I went to the ER and again thrush and pcp. I got another HIV test that again came back normal. My doctor tested my blood and it came back reactive. The western blot was indeterminate.... Very puzzled I went to the health department and they rushed my test because I had been so sick. I went to my first visit with my HIV doctor and I had brought my parents with me and. She said we have to work hard to get your cd4 count up. I asked that question that echos so loud in my ears that I still get chills.. My cd4 count was 5. I just thought I was positive, now I have AIDS. I was so scared that my life was going to end. Well my friend over 2 years later, I am undetectable... That happened after 2 months on meds. I am now on the threshold of my CD4 count above 500.... You have to listen to what the doctor says and don't be afraid to ask questions... Stay strong my friend and if you need to talk.... I am here.

Much Love,
RICHIE

richardhsmithson · « **Reply #31 on:** May 12, 2015, 06:20:08 pm »

Just read the thread. Praying and sending big energy your way.

zach · « **Reply #32 on:** May 12, 2015, 06:25:18 pm »

cleared with them to share with yall

i get a kick out out of em

good people, understandably scared to death. i worry they think i'm feeding a line of bullshit being so confident he'll pull through. she's a rock standing beside him the way she is

anyway, the most recent updates

Quote

Today the doctor come in and said NKB's shortness of breath should have been improving by now and he's worried that it's not. With him being on high flow oxygen and still being in the high 80s and low 90s...He said he is concerned that either 1. The bactrim is not properly treating the PCP or 2. He has some sort of secondary bacterial infection. He he wants to try to figure out if he has another infection and is going to give him some different antibiotics to hopefully treat that. He said the alternative to the bactrim for the PCP is very toxic and he would prefer not to put him on that yet.

He is scared he's not getting better and he's going to die in the hospital. I can't say that I don't feel the same way at times. It's so scary. One day is good the next day is bad...and not just a little bad usually really bad.

He said he no longer wants to talk (which is understandable) because it winds him and he's scared they're going to put him in ICU. Which I told him may not be a bad thing if he needs to be there....but he's scared that will just be a sign that he isn't getting better.

They started him on Zosyn via IV today....

mac_amc · « **Reply #33 on:** May 14, 2015, 11:16:04 am »

Hope he gets better soon. Must be heartbreaking to see someone you love in so much pain. You guys will pull through and everything will be alright in the end. Best wishes.

DANIELtakashi · « **Reply #34 on:** May 16, 2015, 08:09:20 am »

What is the latest?

just-hopeful · « **Reply #35 on:** May 17, 2015, 11:09:27 am »

Wanted to let y'all know he isn't active on here because obviously he is in the hospital and has been for almost a month. Anything y'all tell me I usually tell him. So thank you for your kindness and support through this.

This morning at 7:20am I got a phone call from the hospital. It was the charge nursing telling me that my fiancé went into respiratory distress. He had shortness of breath, his nose was bleeding and he was turning blue. He called for help & at that point he was moved to ICU. His O2 sat dropped down to the 30s. When I got to the hospital he said he was scared he was going to die. The charge nurse said if they hadn't got there in 2 minutes he would have died. He is in ICU and has stabilized. We're not sure what caused this. Chest x-rays have been ordered and we're still waiting on information from the doctor(s).

Jeff G · « **Reply #36 on:** May 17, 2015, 11:38:35 am »

Thanks for the update Just hopeful … I will be sending positive energy and you both will be on my mind .

Tonny2 · « **Reply #37 on:** May 17, 2015, 12:28:08 pm »

ojo thanks for the update...I will be crossing my fingers...hugs ojo

zach · « **Reply #38 on:** May 20, 2015, 10:46:20 pm »

NKB is having a real crisis of faith right now.

Y'all, I know it's rough going back to when you were sick, but those of us that have been down that hole, he could use your stories right now.

I hate to make this a horror picture show, but he needs to know others have been through what he's going through and came out the other side

NKB, if she has you read this. I hear you're not walking, I've been in exactly that place. Eventually I was diagnosed with an OI called Transverse Myelitis. It took me months man. My cane is still next to the desk, I've trained dog to growl at it to motivate me to stay off it. She'll run away with it, she thinks it's a game. I still can't run, probably never will be able to again. Just-hopeful has the thread where I talk about that part of my ordeal, read all of it, this is why I shared it. I hope that's not why you can't walk, but if it is, there will come a time I tell you to push through it. I know how much it's going to hurt.

Last month I hiked 80 miles, mountains man, one day you'll stand up there again. Believe that.

Fuck AIDS

Quote

NKB said he is concerned that the doctors are just lying to him about his health status and that he is actually dying in the hospital. He feels like the pneumonia isn't getting any better. He now can't walk due to muscle atrophy and he wasn't having this happen to him a month ago. He's frustrated. He's sick of being in the hospital. He said he was trying to read on the forums about people in his situation and with PCP but said he found nothing about anyone being hospitalized as long as him or going through what he is going through. I told him someone did post on his post that they were hospitalized for a time. I think he is looking for what to expect and a time frame and the doctors haven't given him/us anything.

Help? answers? advice?

Ptrk3 · « **Reply #39 on:** May 20, 2015, 11:23:25 pm »

I was in hospital almost two years ago, having been directly admitted from my doctor's office. After four days there, I was told I was HIV positive and had PCP in both lungs (the doctors did not use the term "Aids," most likely because that was the first time I even knew I was HIV positive, so I was one of the 20 percent or so of people who did not know I was HIV positive until I ended up in hospital with Aids and an OI).

My CD4 count was 9 and my viral load was 110k. I was very ill, having lost about 35 pounds in the weeks prior to my hospital stay. I was in the hospital for 9 days and had a number of procedures to clear out my lungs. I was on continual IV's, due to dehydration, and was immediately started on Atripla. By the time I was released, I was very much improved.

Medical care these days is great. NKB: you are on your way to recovery. You will survive this. The worst is over for you (it sounds like the PCP caused a collapsed lung) and you have turned the corner. Keep the faith: you are where you should be and are recovering. Things really do get better. You will survive and live a long and health life.

My thoughts are with you.

Almost2late · « **Reply #40 on:** May 21, 2015, 12:22:15 am »

Hi NKB,

I'm also wishing you the very best and I know you will pull through this.. I also was diagnosed and hospitalized with AIDS, PCP, 13 cd4's and 228k vl.. I was scared I passed it to my wife and terrified I would die.. I started Atripla while in the hospital.. had a hard time walking and breathing, that was January 2014.. I left the hospital with a long list of meds and I slowly recovered and gained my strength back..

I developed KS but the Atripla took care of that in time, these meds are amazing.. since then I've had my ups and downs but am doing well overall..

Get well soon, it will get better

titik · « **Reply #41 on:** May 21, 2015, 01:11:16 am »

Sending you good thoughts as well, NKB. Hope everything is going well.

DANIELtakashi · « **Reply #42 on:** May 21, 2015, 06:09:42 am »

Greetings from Tokyo.

Please read my postings in LIVING WITH HIV - PCP.
You will see how scared l have been feeling but that I am surviving.
You will be all right eventually.

ImisstheOldTimes · « **Reply #43 on:** May 21, 2015, 08:03:13 am »

Hey friend,

I can't say I know how you are feeling, but I know how your fiancé' is feeling... and her screen name could never be more accurate. I have been part of this family for over 3 years now, and have seen many people who were feeling down and hopeless only to realize that after a storm always comes the sun...and sometimes a rainbow. There is one member who has the initials AT...his screen name used to be Already Tired...some of his post were also somewhat like your situation...scared, not sure if anything is working, doubtful...but things DID get better...and he became stronger...and no longer tired...which is why he is AT.

Hang in there, you have your folks and your fiancé to support you 100%, remember she has other crap going on in her life as well, try to support each other as much as possible.

Warm wishes and prayers to you both!
Heidi

wolfter · « **Reply #44 on:** May 21, 2015, 08:25:52 am »

Sorry for somehow missing this thread. It is a tough battle but the war can be won. There are MANY of us here who have returned from the brink. Granted, it's not as quick as we sometimes want but steadfast determination will help a lot.

I can't even recall how many times I've been hospitalized but the last trip was horrible and took a LONG time to recover and a lot of hard work. I had a few breakdown episodes but quickly realized that was futile.

hang in there and continue to fight; your life depends on it.

Joe K · « **Reply #45 on:** May 21, 2015, 01:10:11 pm »

Quote from: ImisstheOldTimes on May 21, 2015, 08:03:13 am

Hey friend,

I can't say I know how you are feeling, but I know how your fiancé' is feeling... and her screen name could never be more accurate. I have been part of this family for over 3 years now, and have seen many people who were feeling down and hopeless only to realize that after a storm always comes the sun...and sometimes a rainbow. There is one member who has the initials AT...his screen name used to be Already Tired...some of his post were also somewhat like your situation...scared, not sure if anything is working, doubtful...but things DID get better...and he became stronger...and no longer tired...which is why he is AT.

Hang in there, you have your folks and your fiancé to support you 100%, remember she has other crap going on in her life as well, try to support each other as much as possible.

Warm wishes and prayers to you both!
Heidi

Heidi,

Since you are negative, you are only permitted to post in either the Someone I Care About Has HIV or Off Topic forums.

Thank you for your cooperation.

Joe

just-hopeful · « **Reply #46 on:** May 21, 2015, 01:30:00 pm »

If y'all don't mind me asking, when you say that it took a while to recover or you were hospitalized previously, can you give us information on how long that was for you?

Joe K · « **Reply #47 on:** May 21, 2015, 02:12:37 pm »

Quote from: just-hopeful on May 21, 2015, 01:30:00 pm

If y'all don't mind me asking, when you say that it took a while to recover or you were hospitalized previously, can you give us information on how long that was for you?

Recovery from illness is different for everyone, as there are just too many variables to how long it may take. For me, the most important thing is attitude, that though recovery may be prolonged, recovery will happen. Many years ago my appendix became infected, so much so that it put me in the hospital for two weeks. They wanted to remove my appendix, but my counts were horrible and the surgeons were concerned that I might not survive the surgery.

We decided on an aggressive course of antibiotics, while I was in the hospital, which reduced the swelling and pain in my appendix, but it did not completely destroy the infection. Not wanting to stay in the hospital any longer than I had to, we agreed that I would do IV antibiotics for six months to clear the infection. I went home, with a Pic line and I did antibiotic treatments twice a day for 6 months.

During those 6 months, my daughter and I went on a vacation to Canada's Wonderland and the city of Toronto. I would take time to do my infusions and the rest of the time, we enjoyed ourselves and led as normal of a life as my health permitted. My point in all of this is simple: we have more control over how we recover, than many realize. It may take longer than you wish, but it doesn't mean you have to put your life on hold until a full recovery happens.

I've also had PCP multiple times and recovery can be protracted, but recovery will happen. I urge you to take it one day at a time and the experience of others, really doesn't matter, simply because they are not your fiance. What matters is that you both commit to experiencing this recovery together and understanding that there may be temporary setbacks, but ultimately, he will get better and fully recover.

Joe

just-hopeful · « **Reply #48 on:** May 21, 2015, 03:04:53 pm »

Joe, Thank you. It means a lot to hear such encouragement from you and everyone else. It's just been a hard time and half the time I don't even know where I should post (lol). The doctor was quite negative today and it put everyone on edge and stirred up our worries. He said something along the lines of some people never recover from the PCP and ultimately it kills them. It kinda crushed the spirits of NKB and the rest of us. He's "relapsing" right now. As in he is in a worse sick state today than he was at this time last week. He is experiencing excessive coughing & chest congestion. He's been running a fever on and off for two days which is probably the first time since he got admitted a month ago. So we're just trying to keep the hope and keep pushing.

I have had a bad couple of days as my job told me they're letting me go. So I've been dealing with additional crap outside of this too. Y'alls support means more than you know because this isn't something we can talk to everyone about.

Jeff G · « **Reply #49 on:** May 21, 2015, 03:16:13 pm »

That doctor should have never said that especially right in front of NKB unless he asked specifically . I am not much of a praying man but you will have my prayers, please take care of yourself as well . Hugs .

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