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pr2005
New User

Reged: 06/24/10
Posts: 1
Loc: London
Is this it? Am I dying?
      #250899 - 06/24/10 12:58 PM

I was diagnosed three years ago shortly after infection (the reason I know this is because I contracted it from my partner and had tested negative six months previously). The doctors defined me as a rapid progressor as my CD4 was already at 250 on diagnosis and continued to decline over the following months, so I started treatment fairly rapidly despite my not having been +ve for long.

Over the last 18 months my CD4 has continued to decline despite an undetectable viral load and I am now back in the 200s. I've had anal warts for over two years that just will not respond to treatment, suffer recurring penile thrush and various other ailments that really do suggest my immune system just isn't able to cope any more.

Over the last three years so many friends have commended me on how well I've handled my diagnosis, but I really don't feel like I can take it any more. I used to have a healthy sex life but now I just feel like a leper. I've completely lost the will to carry on fighting the virus and the doctors have told me that because my viral load is undetectable my treatment is successful so there is nothing more they can do for me to 'boost' my immune system. Over the last month I've been thinking about suicide. I've not done anything about it, but it has made me start looking at the details of my exsting 'death in service' benefits etc. I'd never have thought of such action before but if my immune system is to continue declining and I'm unable to have a normal sex life any more then I don't want to carry on. The virus has won.

I have an amazing circle of friends but I don't want to tell them how I'm feeling as they see me as so strong and brave, and I don't want them to worry for me. I really don't want them or me to see me decline further. I feel like I'd rather go now before it gets too bad. I feel at the end of my tether and don't know what to do or how to cope.

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JoshColo
New User

Reged: 06/04/10
Posts: 16
Loc: Denver, CO
Re: Is this it? Am I dying? new
      #250903 - 06/24/10 11:01 PM

Hi there. Just a word from another person to let you know that I read your words and I feel your pain. Don't give up! Just keep up with your treatment and make sure that your doctors know about these symptoms that aren't going away. If you're not getting the right care, go elsewhere! This isn't a reason to give up -- you can do this. We are so much stronger than this virus. If you feel desperate, please please please talk to someone. Take care of yourself!

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Iwonder
New User

Reged: 06/13/10
Posts: 11
Re: Is this it? Am I dying? new
      #250904 - 06/24/10 11:21 PM

You definitely need to continue to remain strong, I know there is probably more to it but no sex life is definitely not one of the reasons to give up. Unfortunately your CD4 level is declining at least you have an undetectable viral load thats a good direction. One thing I have learned about HIV is that it is different to each person maybe and that goes for the effect of most things, so maybe if you look into alternative care such as holistic medicine, supplements, or a different diet rich in fruits & vegetables hopefully it helps. There is a lot of research on the web about different ways to strengthen your immune system, you just got to find out what works for you.

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Jackie__Blue
Veteran

Reged: 01/20/07
Posts: 1186
Re: Is this it? Am I dying? new
      #250906 - 06/25/10 05:56 AM

While getting CD4 cells up is important, it's not as important as it once seemed. The key is that you are undectectable. Talk to a few long-term survior. Many of them are under 200, some in single digits for a CD4 count but they remain clinically healthly.

It sounds as if all of this is getting to you. Welcome to the club. There is a one of us that at times hasn't been overwhelmed by it all.

Have you thought about joining a support group, or seeing a counselor one on one?

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ScotCharles
Veteran

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Is this it? Am I dying? new
      #250935 - 06/28/10 12:19 PM

I am so sorry to hear about your condition. Suicide is an option only if you have no other options; but you have options. I have known people who lived with so few T cells that they had names for them.

Now may be the time for you to follow your bliss, as Joseph Campbell would say. What do you want to accomplish in this life? What gives you soul deep joy? Seize the hour, seize the day and find your bliss.

You need to stop being so brave for your friends and tell them what is going on with you. You will be amazed at the effect a caring friend can have on your health.

Most of the friends of my youth are dead from AIDS. I often wish that time would wind backward to the 70's and 80's so I could do be with them. But as the song says "We'll All be Together at the Postmortem Ball". I am in this time and place; and, the curve of my life is determined by how I chose to live it, as is your life.

I found my bliss in work that I knew made the world a better place and in building a life with my partner of 30 years. I have survived despite all the blows that HIV has given me. You will too.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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ChristianLdn
New User

Reged: 07/02/10
Posts: 4
Re: Is this it? Am I dying? new
      #251011 - 07/02/10 12:57 PM

Two things:

Firstly, as suggested by Scott, you need to stop being strong for others and do a bit of sharing.

Secondly, speak to your doctor about how you are feeling and get them to explain the situation honestly to you.

It will probably surprise you to know that anywhere between 20% and 40% of us are in the same boat as you and don't see both the expected simultaneous increase in CD4 cell count and a fall in their viral load to undetectable levels - in my own case, it took four years for my CD4 count to rise after starting treatment – so what you are experiencing really isn't all that unusual and it is possible that your doctor isn't appreciating just how much this is worrying you.

I am not going to bullshit you and tell you that it doesn't make any difference – because it does add an extra risk factor and make you that little bit more susceptible to some opportunistic infections – but it absolutely does not mean that the worst will happen and that the end is around the corner.

If it is not too intrusive, can I ask you what your doctor has said about it?

The other thing you may want to consider, for that extra peace of mind, is asking your doctor to put you on a prophylactic dose of Septrin (an antibiotic), three times a week, to give you some extra confidence that you have that little extra something there to protect you from opportunistic infections.

Finally, there are options for giving your CD4 a temporary boost, but they come with unpleasant side-effects and doctors in the UK are therefore generally reluctant to use them unless they are absolutely necessary; which, to be honest, I really doubt they will think it is if your CD4 has only just slipped back into the 200s.

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Crystal
New User

Reged: 09/06/07
Posts: 21
Loc: Washington DC
Re: Is this it? Am I dying? new
      #251012 - 07/02/10 02:03 PM

Sorry to hear you are hurting but please don't give up. I have been there (I'm sure most of us have at times) In 2001 my cd4s bottomed out and I was again told I have not long to live. I had heard this many times over the years, 6 months, less than a year etc. Like you I thought about giving up... well to be honest I did give up (without going into a long story) I got my life insurance and will in order and went for it, I was just tired of fighting. Somehow I survived and here I am years later. My CD4s climbed very slowly, VERY SLOWLY back up and as of my last labs I am at 612. This is the highest they have been in well over a decade. I know all too well how bleak things can seem at times, how it just seems to take over your life and it's hard to find hope but I can tell you that after over 22 years of thinking "this is it" I'm still here and happier than I have ever been in my life. I plan for a future now (being poz most my life) this is something I have never known before, thinking about tomorrow feels good. For me it wasn't counseling or support that got me to where I am it was taking a step back and getting some quite time where I could just breath and not worry about it all, then reassessing who I was and what I wanted around me (cutting excess baggage and so on) each person is different and we each need to find our own way and what works best for us. Just know that there can be a tomorrow, things can get better and that you can think of yourself in terms 10 years from now. Find what will work for you, as I said each of us is different; it may be that one really good friend, or counseling/therapy, or becoming more proactive, or even just stepping back and taking time to breath but do try to find what it is and know that you are not alone there is hope, health and life. I just want you to know that I am glad my attempt failed, I am here today and happy, so I can say first hand to you that there is tomorrow and what becomes of tomorrow can be more than you thought possible.

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