Needing hope right now

[Lostandscared]

Ok so my 26 year old boyfriend was admitted into the hospital Nov. 11th with double pneumonia and found out that he has AIDS. We have been together on and off for 10 years now. He is my best friend above everything else and I'm really scared to lose him. He is in ICU with Pcp and they just put him on a ventilator to help him rest and try to let the antibiotics start working. His CD4 count was 19 coming in now sure if it now. I basically would like to hear some survivor stories of people that have been this sick with AIDS and had a low percent chance of living. I'm just really scared, stressed, and overwhelmed. If this is in the wrong forum in very sorry this is my very dirt post! Hope to hear from people soon in trying to stay positive and tonight is the first night in not stayin the night with him so I'm kinda going crazy. I'm also 26 yrs old.

[Jeff G]

Welcome to the Forums . Im very sorry to hear about your boyfriend. Many of us here have been very sick with HIV just like you BF and are doing fine now ... with just a little luck you BF is going to make it back to health. With today's meds he can lead a normal long life.

You are not alone in dealing with this.

[Lostandscared]

Thank you so much for replying! I'm praying for a miracle and he has a huge group of people praying for him too! It's just a waiting game right now, which is making me go crazy!

[Jeff G]

You have every right to be optimistic he will make a full recovery. The forum is full of folks who have come back from single digit labs and are doing well, Im one of them. The treatments today are powerful and effective.

[Wade]

Hi Lost, I was in the same shape in ICU over twenty yeas ago.
I had PCP and was told on the second day I wouldn't live through the
night because my organs would shut down from lack of oxygen.

They were wrong obviously , after a two week stint in the hospital
round the clock breathing TX I made it home.
The meds we had were nothing compared to what there is now, he will
be on life saving meds and recover to live a long and happy life.

I am now sixty and worked until just a few years ago, I've had two knee replacements and stay active. Your BF will have a fight to get well but he will.
There are many on this forum who have been near death and are still hear to talk about it. Your BF will be one Too!

I Wish you both the Best , Wade

[Lostandscared]

Wade thank you so much! I just hope they can find an antibiotic that will work and the infection starts going away. They have him stable but it's not noticeably better at this point either.

[leatherman]

On my 36th b'day I was in the hospital with 12 tcells and PCP. The doctors had me call my parents because they were certain I wasn't going to make it. Even though I was very sick I made it out of the hospital in 5 days, and went home expecting to be there only long enough to say goodbye to my dogs. Instead having to feed my dogs every day gave me the gumption and will to go on.

Crazy enough, two years later on my 38th b'day I was in the hospital with 5 tcells and PCP again. Once again the doctors were certain I wasn't going to make it. if we had been betting, even I would have laid money down that their diagnosis was right. However I told the doctors that I had outlived PCP once before and was going to do it again. Of course, they told me that is not how it works and that having PCP a second time meant it would be even less likely that I would survive. But I bet on myself, and as you can see because I'm responding, I got out of the hospital 4 days later

All that was, let me see, 17 years ago when I was last in the hospital. on my recent trips to the ER because of several allergic reactions (not HIV), the doctors told me my record still stands because I wasn't admitted So, yes, it is possible to beat AIDS and live a nice long time. Matter of fact, the odds are even more in favor for that now in 2015 since the meds have come a long ways since two decades ago.

However, I can't sugar coat it all either. People who get tested and treated too late sometimes don't make it because they don't get treated in time. If someone lives in the Southern states, are poor, or in previous bad health, the chances are even higher that someone won't make it

As someone who was in the hospital bed twice but got out and lived; and as someone who sat by the hospital bedside of my two partners who only got out of the hospital to go home to die, all I can tell you is to have hope. There is no crystal ball or magic 8-ball answer that will get you or your boyfriend out of this situation. All you can do is wait, live through it, and hope for the best. It's a terrible situation to either be in the bed or beside the bed; but it's much worse being in the bed! My advice to you is to keep your hope alive and help your boyfriend keep his hope going too.

although I know this is a tough time, there is something else you need to think about too - getting tested. You can certainly see the results of waiting too long to get tested and treated. While you might not want to know the answer right now, when things stabilize for your boyfriend (see what I did there? see how I kept hope alive ), you need to take care of yourself and get tested too.

best wishes to your boyfriend and I certainly hope that he'll be out of the hospital soon and back home recovering. Best wishes to you also as you struggle to stay strong and think positively about the outcome of such a difficult situation.

[Lostandscared]

Thank you so much for your encouraging words leather man I am tryin my best to stay positive! He's heavily sedated right now but I still have been talking to him telling him I love him and to keep fighting he doing great. Not sure if he can hear me but I'd like to think so! I do plan on getting tested in just tryin to get over one hurdle before I jump another you know. This is all so overwhelming I don't think my brain could handle anymore bad news right now.

[Jeff G]

Thank you so much for your encouraging words leather man I am tryin my best to stay positive! He's heavily sedated right now but I still have been talking to him telling him I love him and to keep fighting he doing great. Not sure if he can hear me but I'd like to think so! I do plan on getting tested in just tryin to get over one hurdle before I jump another you know. This is all so overwhelming I don't think my brain could handle anymore bad news right now.

Please start thinking about yourself ... you cant be there for him if you do not do what it takes to stay healthy yourself. If you have contracted HIV you need to know it now while you are still healthy. If you have HIV and do not know it things can change for you and turn on a dime for the worse. I do not mean to add to your stress but this is whats on your plate at this point in your life so please make smart decisions .

[Lostandscared]

Please start thinking about yourself ... you cant be there for him if you do not do what it takes to stay healthy yourself. If you have contracted HIV you need to know it now while you are still healthy. If you have HIV and do not know it things can change for you and turn on a dime for the worse. I do not mean to add to your stress but this is whats on your plate at this point in your life so please make smart decisions .

You are right, I tried to go to the emergency room at his hospital the other night to get tested because I've had a cold and wanted to get antibiotics so I don't get him even sicker but they said they can't do the testing there because of privacy issues but they gave me the number of the health department that will do it for free I plan to schedule an appointment sometime next week. It's definitely a scary thing to even think about especially if he doesn't pull through and I am positive then I'll be left alone to deal with it. It brings a lot of anxiety but I know the sooner I find out the better! Again thank you for your support it has really helped to be able to hear the survival stories and yalls kind words! Keep him in your prayers please! his name is marco.

[Jeff G]

If you can afford it you can buy a test kit at the pharmacy that is very accurate . The testing window period is 6 weeks past any possible exposure and again at 3 months for a conclusive result. If you feel like you need support then using the health department or a testing center is the way to go .

You can read about testing here...
http://www.aidsmeds.com/articles/HIVtests_5029.shtml
 

[leatherman]

you can also try https://locator.aids.gov/ to find out HIV health services in your area. Often HIV clinics/AIDS Service Organizations do walk-in, confidential, free testing during the week.

Many of those agencies are set up to help persons who do test positive, so if you would test positive they would be the ones to either give you health care or refer you to a doctor. These agencies also help with access to health care, meds, and others disparities related to living with HIV.

When your boyfriend does leave the hospital , he should be referred to an HIV/Infectious Disease doctor or to an HIV clinic/treatment agency. If you can't get tested until then, I'm sure that doctor or clinic will be able to help you out.

[Tonny2]

       ojo         Hello Lostandscared

Welcome to the forums...I think your bf is going to be fine, doctors have been treating PCP for a while with good results...I was in the same situation your bf is right now, 21 years ago, I was addmited to the hospital with PCP, cd4=20, treated with pentamedine, I think I was out of the hospital in six days, tho, it took me a month to recover from all the weight loss and the breathing problems...please try to relax, you do not want to get sick yourself, maybe is a good idea to get tested just to make sure if you are positive and if you are, how bad is your infection, I know it is difficult but you have to think in your own health, not knowing if you are infected gives you more stress than knowing it, because if you know it, you treat it...wishing you the best to both of you, no preayers from me, but lots of good vibes and good wishes...everything will be ok, after he leaves the hospital, he will be given medication and he will recover...hugs                                                       ojo

[Lostandscared]

Thank you so much! We found out he had Cmv too, they started treating it today so maybe that will make a difference. And yes I have been stressing about getting tested too. My biggest fear is if he doesn't make it and I'm positive I'll have to go through it alone. I know I have to get tested though I'm going to the health department this week.

[Tonny2]

Thank you so much! We found out he had Cmv too, they started treating it today so maybe that will make a difference. And yes I have been stressing about getting tested too. My biggest fear is if he doesn't make it and I'm positive I'll have to go through it alone. I know I have to get tested though I'm going to the health department this week.

        ojo     Sorry to hear about the CMV, if you don't mind me asking, where does he has CMV?...you got to get tested, you said you were together on an off for ten years, , he has this virus for a long time, maybe even when you started seeing him, so, please go and get tested, and be positive, he is going to make it through, you don't want to give him your bad vibes, at least he is fighting, isn't him?...hugs           ojo

[Lostandscared]

He passed away Monday, it doesn't seem real though. I found out I'm HIV negative though.

[Wade]

I am So Sorry to hear this .
I was thinking of you both today , my heart goes out to you.
Glad to hear your negative.
A Big Hug , Wade

[Ptrk3]

I am so very sorry to hear of your loss.  My thoughts are with you.

[leatherman]

I'm so very sorry lostnscared.  Losing someone you care about is a terrible thing that too many of us understand. Sadly too many people find out they're positive when admitted to the hospital (about 1/3 of people diagnosed with hiv/aids). Although the meds today are awesome, there is still quite a number of people who are not able to recover though.

I'm sure finding out your status is negative is very bittersweet. Even though it may not feel like it now, that is good news.

When you feel up to it, please post something about your boyfriend over in the "In Memoriam" section. Part of HIV advocacy is to make sure those we have lost are not forgotten. Not only do our memories of them, shared with others, keep them alive; but perhaps our memories of them will help other people to understand how important it is get tested and treated in time.

My deepest condolences to you, his family, and all those who loved him.  

[Jeff G]

Im so very sorry for your loss Lostandsacred.

[Tonny2]

He passed away Monday, it doesn't seem real though. I found out I'm HIV negative though.

      ojo     I'm so sorry for your loss, when you mentioned about his CMV, I was concerned, again, I'm sorry, R.I.P....I'm glad you are negative, please be strong...tons of hugs on your way                                ojo

[Lostandscared]

His funeral was yesterday and it's was really hard, but it still doesn't seem real, I feel like I'm going crazy because I just can't accept that he is gone forever. It was a big relief that I am negative because I don't think I could do it if I was positive and he's gone now. I cried when they told me the results. I just want him back. I hate this.

[lioness]

Hey gal, wish you God's guidance as you go through this trying moment. Take your time to mourn for your loved one for now, then let his soul rest in peace. You did your very best and just know that everything happen for a reason. You will be fine en all the best

[Tonny2]

His funeral was yesterday and it's was really hard, but it still doesn't seem real, I feel like I'm going crazy because I just can't accept that he is gone forever. It was a big relief that I am negative because I don't think I could do it if I was positive and he's gone now. I cried when they told me the results. I just want him back. I hate this.

            ojo      I'm so sorry for your loss, hang in there, and hopefully, you will make somehing good about this situationn maybe talk to younger people, like your ex, about HIV, about the danger of having unprotected sex, if you say it to at least one person and share your experience with him/her, your boyfriend death will not be in vain,...when my friend TONNY (the first person I knew with hiv and died a year latter for a cancer associated to cancer), I told him when he was in the hospital, that I wwas going to quit participating on these forums, he told me, "don't do it, you have not idea what you have helped me deal with my dx, keep sharing your experiences with others, it feels good to know people whom are going trough the same, and share their experiences", so, I'm here, I even asked to change my username, to honor his death, and I know he is very happy, wherever he is, that I'm here doing what he asked me to do...hugs on your way     ;j;