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Author Topic: Questions for Long-Term Survivors  (Read 6622 times)

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Offline LM

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Questions for Long-Term Survivors
« on: May 10, 2011, 11:46:02 pm »
Others can answer as well, of course. I'd like to know how you would evaluate your quality of life after 15, 20+ years with HIV. I don't know, I hear about cognitive decline, faster aging, that most LTS are retired and some complications even though their numbers are good... it gets me worried and sad, as I'd like to think that I could keep working until my old age, and that my health should be OK if I take the meds when necessary. Or perhaps not?

Offline mikeyb39

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Re: Questions for Long-Term Survivors
« Reply #1 on: May 10, 2011, 11:49:41 pm »
LM,
That's a great question, that has passed thru my mind quite a few times myself.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline tednlou2

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Re: Questions for Long-Term Survivors
« Reply #2 on: May 11, 2011, 12:03:41 am »
I think it would be hard to compare LTS'ers experiences with that of those of us dx'd after HAART--especially in the 2000's.  I often have to remind myself that our experiences won't be similar to their's.  I will read the posts about all kinds of health problems--loss of vision, bone issues, organ damage and think, "I thought the experts said we shouldn't have to worry about those issues."  I have to admit that I wonder whether we'll have many of those same problems.  But, most say those problems are due to the meds of the past and not having meds at all. 

So, I would be interested to hear how much the LTS members believe are due to lack of meds/no meds and then not very good meds--having several resistance issues, or whether they believe these health issues would have happened even if today's meds were available since the 80's.

Offline Jeff G

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Re: Questions for Long-Term Survivors
« Reply #3 on: May 11, 2011, 12:06:53 am »
I wish I could answer that question but my answer is always the same , I don't know how I'm supposed to feel after being poz 26 years , I feel I lost my objectivity . I would like to think others feel better than I do at my age for they're sake .

Its similar to when I was going through a long series of chemo therapy and people would ask me how I felt and I would say I was making out just fine . It was only after I completed chemo that I realized how much it had affected me and how much better I felt not getting those toxic drugs every 21 days for almost two years .

I have been forgetting things lately , things like what my doctors said to me at my last appointment and where I put things around the house . These things never happend to me a few years ago and I'm wondering is this normal for a 49 year old guy .  
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Offline BT65

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Re: Questions for Long-Term Survivors
« Reply #4 on: May 11, 2011, 04:00:13 am »
Well, I'm a bit like jg1962 as far as the forgetting goes.  I forget everything, and am having to write myself a lot of notes.  But then again, I spoke with someone at my work about this, who is negative, and he told me as he ages he has to write himself notes all the time.  I also get tired a lot easier than I did even a couple years ago.  Again, could be age, could be long term infection.  I have long term damage to my knees known as avascular necrosis, and need knee replacements.  I have diabetes, which I didn't have until 12 years ago, and it was made worse by some meds I was taking (luckily the doctor switched them).  I could go on and on, you get the picture.

Things have actually improved for me.  After living in hell for quite a few years due to a combination of prescription pills, I got off of them, went back to school for an undergrad degree, and am now working full-time again.  The only drawback is I'm fighting with Social Security (I was on SSDI), they're saying they overpaid me and I owe them money. 

As for lifestyle, I go to bed earlier than anyone I know, have insomnia, and on the weekends take all kinds of naps.  I always secretly hope no one has anything planned on the weekends during the afternoon so I can nap. 

I'm sure there's been damage done, but I just take my pills and go forward, and try not to think about everything wrong with me.  I also have a best friend who I tell everything to, and get a huge amount of support from her, and that always helps.
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Offline sevillano

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Re: Questions for Long-Term Survivors
« Reply #5 on: May 11, 2011, 06:37:43 am »
hey guys!

I´ve been + just for a bit less than 4months right now and it looks that I still live in a kinda denial, coz I keep convincing myself that if I will stick up with meds (when I start with them) I will be OK, without any major issues etc ... So do you guys think that just being positive (having this bloody virus in our body, even if UD) is killing us?

otherwise I am doing gr8! I keep on working, having fun, going around - Like I said, I am STABLE :D hehe ...

TC
----------------------------------------
dec 2010       - tested neg
22.01.2011    - infection
10.02.2011    - tested poz (test of 4th generation)
18.02.2011    - ELISA test poz
                    - VL: 5 mio
                    - CD4: 421 (19 %)
                    - CD3: 1709 (78%)
                    - CD8: 1267 (58%)
may 2011 - CD4: 428 (21%)
                  VL: 250 000
august 2011 - CD4: 398 (24%)
                      VL: 50 000
november 2011 - CD4: 320 (24%)
                           VL: 134 000
09.12.2011 - CD4: 284 (26%)
16.12.2011 - started TRUVADA/REYATAZ/NORVIR
16.3.2012 - CD4: 373 (25%), VL: 459

Offline wolfter

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Re: Questions for Long-Term Survivors
« Reply #6 on: May 11, 2011, 06:41:58 am »
I think most of us LTS have dealth with OI's and meds that affected us that most people recently diagnosed won't have to.  Personally, I'm not sure how we can evaluate the difference between normal aging and the affects of HIV.  How are we to know what's normal for someone our ages who are negative?  
Being honest is not wronging others, continuing the dishonesty is.

Offline J.R.E.

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Re: Questions for Long-Term Survivors
« Reply #7 on: May 11, 2011, 08:03:34 am »
Hi,

For the most part, I feel I am doing well.  Not exceptionally well, but pretty good. I've been HIV positive for almost 26 years. ( since 1985)  Of those 26 years, I have only been on meds for just about 8 years. I had a very rough time, back in 2003.  By refusing to start on medication, when I should have started. For this, I paid dearly.  35-40 pounds of wasting, pneumonia, esophogeal thrush, shingles, and a couple other OI's'

I didn't have to deal with some of those earlier medications, and the related problems, as my fellow LTS's did.

I've been hospitalised once throughout all these years, and that was to the aforementioned pneumonia I had in 2003.  Knock on wood,.... other than normal medical outpatient procedures, I had one hernia surgery, and I had butt wart removal two years ago, this past Monday. So far all is fine.

Also been dealing with a lot of skin cancer through the years, mostly basil cell, but I have had squamous cell.  Everything seems to be going well.  Main thing there, is catching it early.

I still have my tonsils and still have my appendix.  :P


One of the biggest issues I am dealing with is with short term memory.  Sometimes in conversation, my mind will go blank, and it's not uncommon for me to sometimes forget where my partner and I had lunch, 5 hours after having lunch.  I find this most  frustrating of all. I also deal with issues of fatigue, but it's tolerable.

And posting, ......  I continually make mistakes and have to go back and make corrections.  I will put up a post and find words completely missing from the sentence. Or, the sentences are so fucked up, It takes me a second, to figure out what the hell,  I was trying to say.


I am 59, and still work full time. I never stopped working. The job I had back in 2004, I couldn't do anymore , due to neuropathy.

Fortunately, I took a desk job within the same company ( had to take a cut in pay), but at least managed to keep my health benefits. I quit my group health insurance at work, and went into the VA Healthcare, effective January , 2010

I am able to do my current job very well,  but there is no way I could do the physical work that I was trained to do.  I wear out too easily. There are just some days, when I get totallly wiped out.


Hopefully , I won't have any catastrophic health events, because I  plan on giving notice at work on my 62nd birthday.  And that will be the end of that shit.  Enough is enough. I've worked since I've been 16 years old.  I'm getting tired.

My appetite is great. I try to eat healthy,  I have no problem with sleep. I don't smoke, or drink, but will have a drink on occasion, around the holidays and my birthday. There is no way that I can handle the alcohol, like I used to, so it's best to avoid it.


  I always manage to get 8-9 hours of sleep a day. Insomnia, has never been an issue with me. I walk a mile daily, and exercise, at least 3 days a week. Exercise is mostly cardio.

I have a couple other medical issues that I am currently dealing with, and hope to get some answers on those soon.

I've had great support through the years, from my family, friends,  and my partner of almost 31 years, which I am sure has contributed to my survival. Everyone needs to have this support.

Finally, as Wolfter mentioned, "I'm not sure how we can evaluate the difference between normal aging and the affects of HIV. "   



Ray

Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline J.R.E.

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Re: Questions for Long-Term Survivors
« Reply #8 on: May 11, 2011, 08:11:17 am »


I also wanted to add,  I need to accomplish something everyday, and to keep busy. This is fulfilling to me. I f I don't accomplish something, it's a wasted day in my mind.

Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline AlanBama

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Re: Questions for Long-Term Survivors
« Reply #9 on: May 12, 2011, 02:55:45 pm »
I wish I could answer that question but my answer is always the same , I don't know how I'm supposed to feel after being poz 26 years , I feel I lost my objectivity . I would like to think others feel better than I do at my age for they're sake .

I totally agree with jg here; it's been so many years since I knew what "normal" felt like, I honestly can't answer.   I feel o.k. most of the time, nothing awful or debilitating.   I don't have a lot of energy, and get tired easily.   My bathroom habits have not been "normal" or what most would consider normal for over 15 years.

I started out with a wrecked immune system, and had lots of O.I.'s and other immune-related disorders; I developed Addison's disease; I developed congestive heart failure;  my body, now considered "healthy" with my viral load undetectable, and CD4's in the 500-600 range, has healed itself of many things (such as the Addison's thing) and my heart is much better today, with normal function (on medication).   It's very hard to specify what is due to AIDS, and what is due to being 54.   You can't take one into consideration without the other, though our health care providers often seem to.

I hope that those more recently diagnosed with better drugs available, and not having to experience O.I.'s and wasting, etc, may have WAY healthier lives as they grow older.   My advice to you is to plan for a normal life expectancy, and CERTAINLY plan and provide for retirement !   I will be working until they plant me.....

Hugs, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline mecch

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Re: Questions for Long-Term Survivors
« Reply #10 on: May 12, 2011, 05:17:03 pm »
Others can answer as well, of course. I'd like to know how you would evaluate your quality of life after 15, 20+ years with HIV. I don't know, I hear about cognitive decline, faster aging, that most LTS are retired and some complications even though their numbers are good... it gets me worried and sad, as I'd like to think that I could keep working until my old age, and that my health should be OK if I take the meds when necessary. Or perhaps not?

Wondering if you got your labs back yet?  Didn't you say you were recently diagnosed. And do you know how long you might been HIV+ before the diagnosis.

Its understandable to be afraid about the future - but what do you think about Tednlou's perspective? Is it helpful to compare your present and future to people who lived something quite different?  In an earlier post you expressed confidence in the quality of drugs today and for the future. 

How afraid are you, exactly, about future handicaps?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline LM

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Re: Questions for Long-Term Survivors
« Reply #11 on: May 13, 2011, 01:13:48 am »
Hey mecch, I had to repeat my tests around now, but I'm out of town and, long story short, I'll do them in two months.

I know it's recent because I got tested in January and it was neg. Then I was kind of down with some things in my life and let it all out on sex. Had two risky encounters in March, and I thought that it was ok, I mean, what are the odds of getting HIV in two encounters? Well, probably low, but there you go. I had some symptoms, got tested for everything the doctor thought of, and nothing came out. I suggested HIV, the doc said it probably wasn't, but I was right. So if you think "nah, it won't happen to me", think again. But you guys already know that.

Anyway, about the topic, I'm optimistic about the future, I think it's unlikely that no cure will be found after 20 years or so. I mean, scientists seem to be getting close to it. But I have to accept the possibility that I'll be on meds for the rest of my life, and it worries me if I reach 40 or 50 and can't work anymore (I'm 26 now), like I've seen some report. So I was curious of LTS' perspectives on the meds today, because I guess they are taking them now too.

One interesting aspect I've noticed is that most, if not all, can't tel the difference if what they have is from natural aging or from HIV. I think this is good, after all, our health and quality of life is indeed different as we age, and it would be easier to blame it all on HIV. Aging sucks anyway.

To answer your last question, I would be very afraid of possible handicaps. I feel ok now because the only bad things I predict are going to the doctor constantly, being more careful with my health and taking meds constantly. Might have minor complications, but nothing serious. Anything above that worries me.

But there's another thing I've seen that is crucial: keeping a good mental health. I see that the people who are worst off are usually suffering from depression. So since I've been diagnosed, I've been trying to keep myself busy with my friends, more than before. And as soon as things settle down, I plan to look for some voluntary work, if possible with people who have HIV/AIDS. I know it will do me good while others are being helped.

Offline denb45

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Re: Questions for Long-Term Survivors
« Reply #12 on: May 13, 2011, 01:26:26 am »
I can give you my answer, after 23 yrs. of having HIV/AIDS maybe even longer than this, and being outta work for the last 12 to 13 yrs. when I look in the mirror, I see an old aging man with failing health issues, that aren't gonna get any better, so I struggle with them, and just try to live my life the best I can do.

 I just flat-out refuse to be defeated by any of this and take Solis in the fact the I'm still ALIVE, and others before me, just weren't so lucky to be here, it makes my kinda sad, but it doesn't stop me for having some quality of life, I'm still here dammit might as well make the best outta a bad situation, if I got a bunch of lemons then I might as well make lemon-aide..............right?
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

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Re: Questions for Long-Term Survivors
« Reply #13 on: May 13, 2011, 05:39:25 am »
Today I feel great,soon I will be packing for a long W/E in Suffolk , staying in a beautiful house, walking the dog on great beaches with a good friend.

I am 54, been ill since 38, with periods off respite off up to 1.5 years, I take 24 pills a day plus wear fentylin pain relieve patches .In Jan I had PCP and broke my ankl;e collapsing due to low blood pressure. The 3 breaks are due to osteoporosis, the low blood pressure left over from 2 bouts off chemo which damaged my lungs my point being all related to HIV and the meds needed to ensure that I feel good today looking forward to a W/E away.

I keep a good check on my moods as i have had 2 bouts off up mania and countless periods off down periods, Although with with the mental health side off health not all the issues are HIV related  , grieving for lost partner and friends and dealing with my own Aids fears are a large part.

If I do not rest my body it revolts and I either get ill or collasp

I am fortunate to live in the UK and have a great Hospital.

Clearly the out look for folk diagnosed today who use meds will in the most part be differant to the above. As my life has been differant to all my friends who suffered and died.

The first friend I lost when I was 17 was due to Heroin my point being life as Warran Zevron said will kill ya.
with love theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mecch

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Re: Questions for Long-Term Survivors
« Reply #14 on: May 13, 2011, 05:59:32 am »
So I was curious of LTS' perspectives on the meds today, because I guess they are taking them now too.

One interesting aspect I've noticed is that most, if not all, can't tel the difference if what they have is from natural aging or from HIV. I think this is good, after all, our health and quality of life is indeed different as we age, and it would be easier to blame it all on HIV. Aging sucks anyway.

Ok just keep in mind to look for this precise response:  
I was curious of LTS' perspectives on the meds today

And keep in mind that a person in your shoes, infected 2011 and diagnosed directly, cannot base beliefs about his future on life-long medicine, upon a group with quite a different experience.

On the other hand, some of the "new" drugs aren't so new after all. Sustiva and "Truvada" there are people on this (atripla now) for over 10 years so there is a lot to learn, but have to take people's histories individually to see the relevancy to extrapolating to a new time and a different person.

It's good to hear some LTS's with great experiences on the new medicine and dealing with aging now.  Others have many problems.

By the way, you didn't get numbers at diagnosis?  Its been a few months.....  



« Last Edit: May 13, 2011, 06:12:21 am by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline LM

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Re: Questions for Long-Term Survivors
« Reply #15 on: May 13, 2011, 08:29:28 am »

By the way, you didn't get numbers at diagnosis?  Its been a few months.....  


No, thing is, ELISA came poz, WB indeterminate. The doc said by most standards my WB test would be considered poz, it was just because it was recent, and standard procedure anyway is to test again in a month. And that was April 15th.

Offline mecch

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Re: Questions for Long-Term Survivors
« Reply #16 on: May 14, 2011, 11:49:03 am »
No, thing is, ELISA came poz, WB indeterminate. The doc said by most standards my WB test would be considered poz, it was just because it was recent, and standard procedure anyway is to test again in a month. And that was April 15th.

First things first. Before you get all worried about your life 40 years from now, HIV+, you need to get confirmed as HIV+.  I guess you doctor "kinda" confirmed you are, but there's always hope....

And then, of course, if you are, please worry about the moment.  Takes times to take it all on.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline CaptCarl

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Re: Questions for Long-Term Survivors
« Reply #17 on: May 14, 2011, 01:31:49 pm »
Hello LM

I have been positive for 23 year this summer, I am 46. Half my life has been spent with this illness. I have to agree with Jeff and Betty about the things I am going through, fatigue, forgetfulness, loss of energy etc. It's hard to figure out where it all comes from. Is it just the natural aging proccess, the HIV, cumulative effects of all the meds over all the the years, or a combination of all three? Plus in my particular case, I had a liver transplant a while back, and I certainly have not gotten beack to where I was physically beofore the surgery. Unfortunately, I don't think I'll ever get back to the pre-surgery me. I work a very physical job as a landscaper, am restoring an old car, and have five children of the four legged variety, so energy is a precious commodity and in somewhat limited supply. I understand your wanting answers to these questions, but I think that you will find there are no clear cut answers to be found.

As far as an LTS's perspective on meds today? They are amazing compared to what was available "back in the day" when you were limited to AZT monotherapy, which often as not killed you before the disease did. I am willing to wager that in another 10 years or so, there will be classes of meds that make the current crop seem as barbaric  and crude as AZT seems to us now.

CaptCarl
The only thing I can do straight is shoot..

Offline tednlou2

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Re: Questions for Long-Term Survivors
« Reply #18 on: May 15, 2011, 11:17:16 pm »
Hello LM

Plus in my particular case, I had a liver transplant a while back, and I certainly have not gotten beack to where I was physically beofore the surgery. Unfortunately, I don't think I'll ever get back to the pre-surgery me. I work a very physical job as a landscaper, am restoring an old car, and have five children of the four legged variety, so energy is a precious commodity and in somewhat limited supply. I understand your wanting answers to these questions, but I think that you will find there are no clear cut answers to be found.
CaptCarl

For those of us who haven't been here as long as others, I was curious if you've discussed the reason for the liver transplant?  Was it due to being HIV poz or was due to other factors?  I recently read the article about how liver disease/failure is the number one cause of death in people living with HIV.  However, that article didn't give other possible contributing factors to this, such as co-infection with Hep C.  The article just made it seem like HIV was the cause.

Modified for spelling
« Last Edit: May 15, 2011, 11:19:25 pm by tednlou2 »

Offline LM

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Re: Questions for Long-Term Survivors
« Reply #19 on: May 16, 2011, 02:24:06 pm »
I can give you my answer, after 23 yrs. of having HIV/AIDS maybe even longer than this, and being outta work for the last 12 to 13 yrs. when I look in the mirror, I see an old aging man with failing health issues, that aren't gonna get any better, so I struggle with them, and just try to live my life the best I can do.

 I just flat-out refuse to be defeated by any of this and take Solis in the fact the I'm still ALIVE, and others before me, just weren't so lucky to be here, it makes my kinda sad, but it doesn't stop me for having some quality of life, I'm still here dammit might as well make the best outta a bad situation, if I got a bunch of lemons then I might as well make lemon-aide..............right?

denb45, sorry if it's a personal question, but why did you stop working? But you are right, gotta keep moving and making the most out of it.

Offline denb45

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Re: Questions for Long-Term Survivors
« Reply #20 on: May 16, 2011, 05:12:58 pm »
denb45, sorry if it's a personal question, but why did you stop working? But you are right, gotta keep moving and making the most out of it.

Well let me see, if my memory serves me right, 12 or 14 (1997) yrs ago, I had 90 T-cells, and 3 OI's and couldn't hold my bowels for the life of me, I don't think they even had a measure of UD back then, like they do now so, my SSDI went thur the 2nd time, fast-forward 15 yrs. later

 I'm stable, healthy, and UD, and have been for the last 8 yrs. now I'm battling other health problems, like kidney failure @ 57% , PTSD ,and GI-problems along with my age, but, right now I'm kinda over AIDS, been there done that, after 23 yrs. I"M OVER IT, to me it's just a chronic manageable disease, as stated above I have more pressing health problems being a LTS, I mean the damage is already done to my body, so basically I'll be on SSDI probably for the rest of my life, or what's left of it  ;)
« Last Edit: May 16, 2011, 05:25:51 pm by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline weasel

  • Member
  • Posts: 1,906
Re: Questions for Long-Term Survivors
« Reply #21 on: May 17, 2011, 08:14:37 pm »
 

               LM , I have lived over half my life with HIV !
 
                  At my age   56  I do have issues . 

                  My biggest issue ?    I have a MIRROR IMAGE TWIN !

                  It kills me to look at my twin . He looks so good .   He has  all the  body fat in the right

                     places . he looks years younger than me !   He has great legs !

                 I know  a lot of my issues are now age related , But as DEN45 said , The damage is done !

                I have to seqdual my  trips to the store around the bathroom  :-[

                    I get so tired ! I sleep a lot !

                 What used to take hours now takes weeks ! Really weeks !   

                 My boss said I could keep my job , but i am useless as a  paid worker  :(

                I feel the newbies  will  fair much better than we did .

                                                                            Carl
" Live and let Live "

Offline tednlou2

  • Member
  • Posts: 5,730
Re: Questions for Long-Term Survivors
« Reply #22 on: May 17, 2011, 11:50:04 pm »
 

               LM , I have lived over half my life with HIV !
 
                  At my age   56  I do have issues . 

                  My biggest issue ?    I have a MIRROR IMAGE TWIN !

                  It kills me to look at my twin . He looks so good .   He has  all the  body fat in the right

                     places . he looks years younger than me !   He has great legs !

                 I know  a lot of my issues are now age related , But as DEN45 said , The damage is done !

                I have to seqdual my  trips to the store around the bathroom  :-[

                    I get so tired ! I sleep a lot !

                 What used to take hours now takes weeks ! Really weeks !   

                 My boss said I could keep my job , but i am useless as a  paid worker  :(

                I feel the newbies  will  fair much better than we did .

                                                                            Carl

This is very interesting about your twin.  I wonder how many studies, if any, have looked at twins where one is poz and one is neg?  I suppose it would be hard to find participants, since finding twins in this situation would probably be hard to do--and getting them to particpate if they were found. 

 


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