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      #117718 - 11/26/04 04:41 PM

I was diagnoised with AIDS exactly two years ago. No, that's not a mistype, the Doctor came into my hospital room and just said that I had AIDS! This was the first that anyone had ever suggested to me that I was ill. I had always felt well and had not suffered any symptoms that I would associate with HIV. (When I now read and look back on my life I did have symptoms, but they were easily explained as the result of other illnesses) The reason that my diagnosis was that of AIDS and not HIV was that my numbers were in the range of a person with AIDS (my numbers were a CD4 count of 30, and a viral load in excess of 200,000, Well below and above the ranges)

I have a good doctor in terms of treatment, the best in town! But he is not a resource for information either medical or emotional. I can't find any support groups that meet my needs and a private therapist that I have been seeing for the past two years doesn't seem to ease my fears!

I want to know what my life expectancy is!!! The doctor said that I had probably had the HIV virus for 15 to 20+ years prior to diagnosis. Everything that I read states that people are now surviving up to twenty years with the disease, but if the doctor is right I may be going on 22+ years. Am I close to death? Do I stop working and spend my lifesavings on living? Do I leave my partner of 18 years (HIV-) and explore my last experience's on this planet?

I have told no one of my status except those in the medical field that need to know, that inclues my partner! We have always practiced safe sex and I am sure that he is not infected by me. How do we deal with the uncertainty?

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Reged: 11/06/04
Posts: 43
Loc: Denver, CO
Re: Uncertainty new
      #117723 - 11/26/04 10:40 PM

Sorry to hear of your diagnosis.

Do not leave your partner, work when and how you can, and enjoy everyday you have left in some way.

There is a person I know that lived for over a year with 0 CD4 cells

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Re: Uncertainty new
      #117914 - 11/28/04 02:37 AM

If you've gone this long without being too terribly aware of the side effects, I'm sure you'll live longer than anyone can label you, in addition to wanting to live and your beliefs.

People without the virus are told "to leave each day to the fullest" and I believe that phrase for everyone else in addition. Continue life the way it has always been, if you're happy with it...

However, I would still tell your partner. He has the right to know.


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Long Time

Re: Uncertainty new
      #118715 - 12/01/04 06:53 AM

As someone who has lived with the virus for a long time, and only on meds 6 years, my best guess is that your virus is probably of the "wild type", and would respond well to medications. Unless something is there to defeat you in your life, you should have a good response to meds, and quite satisfactory life yet.

Use the physicians and information on this website "The Body", as it has a great wealth of information on staying well and taking charge of your health care.

Am sorry that your physician is not of much use to you. Look for resources in larger nearby towns and counties. Most have programs to help those who are in need of medications, provided by the Federal Ryan White Act, along with other help. It is not just for the poor but also the working uninsured or underinsured.

Do not give up hope. Realize that many who are living with the virus long term, have had major AIDS defining illnesses years ago, and are still doing well.

My approach for both mental and physical help is to focus on the positive. First, like you indicated, this is not a new condition. You have lived with it just fine for years. Second, if you do not exercise (I prefer weights), get started. It is wonderful for the immune system, and big help in the emotional/mental department. Third, be honest with yourself and your partner. There may just be a lot of untapped support in that.

You did not indicate what state you live in, and for guidance in finding support and help, it would be useful for you to post that information, as you could be directed to specific resources in your area.

This Board is watched by many all over the country, so you probably are not as alone as you think. We are everywhere, even in the smallest towns that hardly make a map.

As I wrote before in this post, I have been pos for at least 20+ years. I know of some that are pushing 30 years, working, and living a normal life. The things that I saw in people who survived well clear back in '85 when I tested positive, are still the things that I believe help make the difference. To restate: 1) Positive Attitude - I can because I think I can. 2) Exercise - wonders for the immune system, attitude, and if you are not currently, physical comfort and attraction. You like yourself, and others follow. (You do not have to be young to attract others - nice little emotional boosts).

Hope this helps. It is not the land of the unknown anymore. like in the '80's.

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Re: Uncertainty new
      #118921 - 12/02/04 08:27 AM

Keep on going guy! You may live a normal life if you follow docs orders and take meds exactly as he says! Good luck!

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Brian M

Re: Uncertainty new
      #122108 - 12/09/04 05:23 AM

One of the best things you can do is NEVER give up and always try and keep a positive attitude (easier said than done). I've been poz since 11/89 and have had my CD4 as low as 36 with a VL of 480,000. I've had lots of up's and down's. I've been in the hospital numerous times, lost two lovers to AIDS and I don't let it get the best of me. Sure it's not easy at times, but you can get through almost anything. Currently I am undetectable with a CD4 count around 285. I have failed on many drug regimines, but have never given up when they did. My doctor and I just discussed what options were available and we moved on to another drug regimine. I don't think there is such a thing as "you only have this much time to live after testing postiive". You can live as long as you want if you just take care of yourself and have a positive outlook on life. There is a magaziine called POZ that has great information and is also free for HIV people. There are a lot of resources out there, I would encourage you to educate yourself as much as you can. It's always better to work with your Doctor instead of just letting him work on you. Hang in there!!

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Re: Uncertainty new
      #126139 - 12/15/04 12:45 AM

Your reactions are understandable. A person wants answers - don't they? You want to know how, when, why, how long will I survive. You felt certain that your good health, up until your diagnosis was a sure sign that you were not positive. Had you never fell ill you would have never known. I didn't test until 1995 and that was only as a result of my beloved lover, who has since passed away being diagnosed with AIDS. David lived another 6 years and he was worse off than you. And to make his situation worse - there were no combination therapies available at the time of his diagnosis. So my hope for you is that you wiill have many many good productive years ahead of you. But I pose one challenge to you -- tell your partner. David and I practiced safe sex as well. My infection was not a result of him - almost certainly. But I would never have found out when I did about my status had he not been diagnosed with AIDS.

It is scary - but it is honest and humane to tell your partner. You mention leaving him - I present a question to you. Are you afraid that your revealing your status will invite him to leave you? This is scary stuff before testing, during and after. But denial is only one of the emotions you will feel.

I wish you all the very best. Not all questions will have a definite answer.

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Re: Uncertainty new
      #156595 - 06/27/05 03:35 PM

if you need someone to talk to, email me, i think sometimes that by talking you calmdown more, and see other windows.
email me at

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Reged: 02/17/06
Posts: 95
Loc: Gilbert (Phoenix) Arizona
Re: Uncertainty new
      #176433 - 02/22/06 02:03 AM

I haven't read the replies here yet, but I will cut in line here with a response due to what you said about your partner.

Does he know? think twice before you decide to give those years up. You are probably thing the obvious, will he leave me? Do I want to save him from this and best I should go.

Stop right there. If he knows, he would have given you some kind of reaction that was easily readable. there are truisms on this.
Many couples with a + and - in the mix do very well. the negative person will want to stay and help you through this and it does work, and the relationship can still be a rewarding one.

Do not make any quick decisions. Talk with him about your concerns, talk with doctors, get into other boards online and other sources out there in the community.

Your concerns are natural. The questions are many. that is ok. Do some research and get some answers before deciding anything. You speak of going through life savings, doing all this stuff that you want to do. for an instant thought, well, ok, but for reality, seek out, find information and think of choices, before acting on anything. The grass may not be greener on the other side. he decisions you want to make are too great and are wanting to be done too swiftly.

Sit back someplace, relax a few minutes, and really think of what you were just saying here. Then sort it out. do what is comfortable for you and yours, but don't rush into something that may put you in a more serious situation.



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