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Author Topic: confused about life expectation  (Read 8244 times)

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Offline zeb

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  • Posts: 172
confused about life expectation
« on: January 02, 2007, 05:32:52 PM »
Hi there,

I've read that (since HAART) hiv has become a chronic disease. But also that it will be a chronic disease with some consequences like a shorter life span. On the other hand I read articles on for example POZ.com that hiv patients also have to save money for their golden years.

Is there a specialist on this topic out there that could give me some information about hiv and the life expectancy (and comparison with for example diabetes)

thanks!
Zeb

Offline rick21007

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Re: confused about life expectation
« Reply #1 on: January 02, 2007, 06:11:32 PM »
Was told by my doc when I was diagnosed that statistically hiv does not shorten one's life, given the present treatments available.  I actually was told that by my brother as well who is a medical professional and especially knowledgable about hiv.   I do think there are a number of more common health problems such as heart disease liver disease and diabetes that are more likely to shorten your life. 

Rick

Offline zeb

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Re: confused about life expectation
« Reply #2 on: January 02, 2007, 06:19:37 PM »
Hi Rick,

Thank you very much for your reaction! I won't doubt you're sources.
But... still people are dying of HIV. Even people uring HAART. What is the reason behind this?

Grtz,
Zeb

Offline Coffeechick88

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Re: confused about life expectation
« Reply #3 on: January 02, 2007, 06:21:38 PM »
A person with HIV who is on HAART and has the access to proper medical care can have the life expectancy comparable to that of the general population.  In fact, there are living in a state of health in which they become overweight--like most Americans--and develop health problems as a result of it--hypertension, diabetes, etc.  So while it is good that we can expect to live longer, we also, as part of that, get to experience the other illnesses that can be acquired due to age or lifestyle.  Many have problems to where they need a family doctor rather than just a specialist.

Here's an article to reference:  http://www.annals.org/cgi/content/full/145/6/463#R7-11
« Last Edit: January 02, 2007, 06:24:49 PM by Coffeechick88 »
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Offline allanq

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Re: confused about life expectation
« Reply #4 on: January 02, 2007, 06:24:58 PM »
Zeb,

I don't think you should base your decisions about saving money for the future on statistics for life expectancy. All of the people on this forum who have been positive for 15 or 20 years have beat the statistics that were current when they were first diagnosed. (Having been positive for 21 years, I am among this group.)

We have no way of knowing what advances in AIDS treatment will be made in the coming years, and I think it's irresponsible for the medical community to publish so-called statistics on the life expectancy of someone with AIDS.

Another thing: statistics on life expectancy apply to a large population and should not be taken as an indication of the life span of a particular individual.

My advice is to plan your finances as if you were not HIV-positive. Have a will, so that if there is money left when you die, it will go to a person or cause that is important to you.

Allan

« Last Edit: January 02, 2007, 06:26:30 PM by allanq »
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Offline poet

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Re: confused about life expectation
« Reply #5 on: January 02, 2007, 07:30:04 PM »
Zeb, as another person who has been positive for 23 years come this Summer, two things need to be kept in mind.  First, no one originally anticipated that those who were hiv positive way back in the '80's would be around now and so the side effects, the chronic effects, of hiv meds. weren't factored into someone's healthcare way back then since the assumption was that hiv would end a life long before heart disease agravated by hiv meds. could take their effect.  The second is that, as you can see by reading the posts, we are all over the map in what the virus does to us healthwise.  Some have staggering high cd4's.  Some have staggering low cd4's.  Ditto viral loads, some of which seem to have an effect and some of which don't.  With that in mind and with the costs of healthcare increasing, expected to increase in the future, the offsets of Ryan White and other programs always in doubt, especially given that at some point we have to look at Medicaid, Medicare, pensions, company paid health coverage in realistic ways, it is never too soon to start saving money, never too soon to build funds for the future, whether that comes early or late.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline blondbeauty

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Re: confused about life expectation
« Reply #6 on: January 02, 2007, 07:35:49 PM »
Zeb,
We have to be realistic about HIV infection. That is what my Dr.told me. The meds we have today can keep your viral load undetectable and your immune system healthy indefinitely. But there is also the possibility of developing resistance to those meds. According to the knowledge we have today we can prevent resistance, but it is a possibility we must not neglet.
My Dr. said that Resistance should not happen if I was adherent to meds but he compared this to the danger of having problems with the anesthesia during surgery. It is very unlikely but it can happen. He also added there are more chances for a patient of dying in a car accident on his way to the hospital than dying during a surgery procedure. But Dr's must warn you about all the horrible things that can happen. So we have to be aware of the real risks in our everyday life. He also advised me not to be obsessed about what might happen, side effects, etc. In medical literature you can find the most tragic events you can imagine if you search for them. He mentioned the case of a woman that has an infected nail on a toe and ends up with brain damage. But that does not mean you are going to end up like her if you have a nail removed.
Even if resistance emerges, you will have the chance of succeeding with a second, third or fourth line treatment. These treatments may be effective for 30 years or more.
Think about the great progress made in treatment of HIV in its 25 years of history. I don't think there will be a cure in our lifetime (and I don't think this is tragic) but I am sure that the problem of resistance will be solved very soon and HIV will be a 100% chronic condition/infection in the next decade.
Shyphilis was the AIDS of humankind for centuries...once we had the cure HIV appeared...If we ever have a cure for HIV another thing will come and we will all catch it.
« Last Edit: January 02, 2007, 07:41:02 PM by blondbeauty »
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
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Offline StrongGuy

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  • Posts: 492
Re: confused about life expectation
« Reply #7 on: January 02, 2007, 09:13:12 PM »
Over at The Body's "Ask the Experts" section, they have a lot of doctor/patient Q&A's on this very subject. Here's what Dr. Daar wrote a few months ago in response the "Life Expectancy Question:

Quote
Thank you for your very important question. Data from the United States has shown that the average time from infection to developing symptoms of AIDS is approximately 8 years without treatment. With the introduction of good combination therapy resulting in viral loads going to undetectable levels I would be much more optimistic. In fact, I strongly believe that those who start treatment and take them consistently will not become sick with AIDS. I would plan to be around for the long haul.

http://www.thebody.com/Forums/AIDS/TreatExp/Current/Q175706.html

There are a number of other posts at The Body's "Ask the Experts" forum if you search "life expectancy" that provides responses more or less in alignment with what Dr. Daar said (some Docs saying expect a normal life barring complications if you have access to treatment, other Docs taking a more conservative there is "no way to know" point of view)

As poet alluded to, their's no one answer for everyone because of the diversity of experiences within the HIV community.

My personal view, based on the reading I've done, is that I have a bright future to look forward to as long as I am vigilant with my health and adherence to my meds. If something goes awry, then so be it. Unforseen complications can occur in almost any chronic disease. But I'm not living in the "what ifs" or fearful of the future. Wasting my days worrying while life is passing me by is not my plan. My outlook is bright.

Mikey :)
« Last Edit: January 02, 2007, 09:23:59 PM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline Queen Tokelove

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Re: confused about life expectation
« Reply #8 on: January 02, 2007, 09:30:05 PM »
Zeb,

I pretty much agree with what everyone else is saying, even though infected now for 9 yrs, I am pretty naive to it all from the medical side. I have been learning since being here. I have talked to my doc about the same thing and he pretty much said what blonde's doc said.

I think it is pretty much normal to worry about one's mortality. But there are so many things that could take any of us out, neg and poz alike. This is my opinion but to worry about such things can only lead to stress. And as we know stress can cause problems too. I'm not saying don't plan for the future but instead consider each day a blessing and live your life to the fullest.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

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Offline jcmiami

  • Member
  • Posts: 32
Re: confused about life expectation
« Reply #9 on: January 02, 2007, 10:03:26 PM »
When I was first diagnosed with AIDS over 3 months ago, i really thought my life was over. I became obsessed with my mortality and life span. I also could not find any "concrete" answers anywhere. I have read in all HIV related sites that we all are expected to live full lives like everyone else as long as we take care of ourselves and take our meds. I have always believed we are here on borrowed time anyways - you can be HIV+ and get run over by a car(God forbid!) I think we just have to appreciate every day and everyone we love/care for.

Offline Eldon

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Re: confused about life expectation
« Reply #10 on: January 02, 2007, 10:33:16 PM »


Hey Zeb...

I understand exactly where you are coming from. There is a lot of good advice that has been given here. Take care of yourself.

Welcome!




Don't You Dare Give Up... Don't You Dare Give In...
BECAUSE It IS ALL Within YOU to WIN!!!

Offline aztecan

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  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: confused about life expectation
« Reply #11 on: January 02, 2007, 11:00:50 PM »
Hey Zeb,
You have pretty much heard the best of it already. I would only add a couple of things.

After more than 21 years positive and (knock on wood) nearly 11 years on the same meds, I am doing fine HIV-wise.

However, I am dealing with health issues that are a result, in part, of my meds, but also in part because I am nearing 50 years of age.

My grandfather died at 60 after an ulcer ruptured and peritonitis set in.

My dad also had an ulcer that ruptured, but he survived, thanks to advances in medicine at the time.

I was on my way to having said ulcer with the same results. But, thanks again to more medical advances, I took proactive action and now have this hereditary predisposition under control.

My dad died at 66 when he had his third heart attack.

I hope to outlive them both. When I tested positive in 1985, I didn't think it possible. Now, who knows? I might just make it.

The point is, today, people just being diagnosed have incredible advantages over those of us who found out when the docs simply said, "Get your affairs in order."

Who knows what the next 25 years will bring?

Were I in your shoes, I would definitely look at retirement savings, consider buying property (still the best investment) and remember the things you do to your body now will come back and kick you in the butt in 20 or 30 years - so take care of yourself.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Mike89406

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  • Posts: 206
Re: confused about life expectation
« Reply #12 on: January 02, 2007, 11:22:13 PM »
Hi Rick,

Thank you very much for your reaction! I won't doubt you're sources.
But... still people are dying of HIV. Even people uring HAART. What is the reason behind this?

Grtz,
Zeb

Zeb been POZ 5 yrs now. One of the reasons I've seen differences in life expectancy nowdays is the fact some people have the Gold standard of healthcare for HIV etc... depending on they're employment, and benefits.
And others dont have the access because of they're working class,  unemployment, different lifestyles like using certain recreational drugs, physical fitness of the person, pre-existing medical conditions.

Drinking can also take its toll on you're liver in combination with HAART it can be a double whammy when you drink and take HIV meds especially when you drink more than moderation the reason I mention that is there are increasing numbers of HIV + people at my hospital in need of liver transplants. Another obvious reason is continuing risky sex behaviors despite being HIV + some people have believed that once you're POZ you cant get sicker but in fact you can become reinfected with a different strain of the virus possibly more aggressive type of strain.

There are people not taking they're meds for various reasons.

It all depends on how you take care of you're body, diet, exercise, proper sleep etc... on how you handle the virus there are more people in this country not so fortunate to have the better doctors, access to treatment etc... and this accounts for more deaths from HIV to AIDS. These are more of the statistics you hear about everyday.   

Offline ademas

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  • Posts: 1,151
Re: confused about life expectation
« Reply #13 on: January 02, 2007, 11:49:33 PM »
There are really no pat answers, are there?
Some are diagnosed early and start treatment immediately; some don't find out until their immune systems are critically compromised.  Some tolerate the medications very well.  Some don't.  Some are resistant to many meds from the get go.   
I've known a number of people who have died of AIDS in the last 10 years (in spite of HAART).
I've seen others defy all odds and rise from their deathbeds and make remarkable comebacks.
Nothing is for certain.
I try not to think about it too much. 
Today was pretty okay, and I'm grateful for that,
and I'm looking forward to tomorrow.



Offline Boo Radley

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Re: confused about life expectation
« Reply #14 on: January 02, 2007, 11:55:51 PM »
I can only add "ditto" to most of the responses to your post.  With HIV the outlook is definitely better than it was for many infected in the late 70s and early 80s.  Besides HAART there are now treatments that were nonexistent 25 years ago for many OIs (since the infections were so anomalous before HIV as not to warrant treatment studies, at least in Western medicine).

No matter what the stats are about HIV the truth is it's your very own virus soon after it enters your body.  If you are as lucky as so many you will be able to lead a life at a level of quality as good as or better than anyone else with a serious chronic but treatable illness.  We are assuming you live in a "civilized" region like North America or much of Europe and other countries where medicines are available to those lucky enough to have healthcare (that's an oxymoron today) coverage.  In too many countries HIV still means AIDS and death.

I think I was infected in December, 1982 but didn't test until December, 1989.  I was in denial about my chances of infection (the guy from 12/82 died in 1984) and also still had the hubris of youth, believing myself immortal.  It's been quite a few years since my youth but, besides an ever increasing tendency toward morbid obesity, my health has been good -- I've never had an OI even though my CD4 was 169 in September, 2004.   I started meds in October, 2004 and have an undetectable vl since and a CD4 count slowly creeping back up although it blipped this last time and fell from 339 to 220.   I'll consider worrying if it's near the same level when the next labs are done. 

Best of luck!

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write 2007 Sweet Old Boo, Inc.

Offline Oceanbeach

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Re: confused about life expectation
« Reply #15 on: January 03, 2007, 01:05:33 AM »
Dear Zeb,

I am no specialist on the topic but have been HIV+ since December 1996 and an AIDS Diagnosis since June 1996.  This timeline puts me in when the good drugs started coming around.  I was told once to start making final plans but 2 years later, I was told I could expect to reach those "golden" years IF I did not get run over by a bus... I take my meds every day, listen to my doctor and his staff.  I treat theri word as gospel and avoid public transportation.  Have the best day
Michael 

Offline DanielMark

  • Member
  • Posts: 1,475
Re: confused about life expectation
« Reply #16 on: January 03, 2007, 05:27:04 AM »
Zeb,

I've  been Poz since 1988. Doctors have had me at death's door. Doctors can be wrong!

I no longer concern myself with trying to anticipate how long I'll live, only how I'll live while I do.

Probably some idiot with a gun will take me out in a bank heist, or a runaway bus will, long before HIV gets me.

NO one can predict the future. Hold on to hope.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Adonis

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  • Posts: 25
Re: confused about life expectation
« Reply #17 on: January 03, 2007, 05:28:50 AM »
As someone on this board said, it's not the years in your life that counts, it's the life in your years.....

Well said!

Offline Ihavehope

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Re: confused about life expectation
« Reply #18 on: January 03, 2007, 09:49:38 AM »
I was diagnosed last month and the the people where I was diagnosed and will treat myself have been more than supportive and gave me hope that I will live a long life. I am 26 years old and believe I was infected last year.
 I was told by my doctor as well that HIV/AIDS may now be considered a chronic disease. Although I at times don't see it that way I think in the next 5-10 years we may see new medications that can convince me of that. Look at Magic Johnson, he looks well and has been poz for many years. Also don't believe everything medical doctors because I have a cousin who was born with an brain illness as well as heart problems and they gave him 6 months to 5 years to live when he was born and he is now 21 years old as healthy as he can be considering his illness. My aunt was a trooper and struggled to keep her son alive and went to different doctors and she found one in Latin America. So if doctors are telling us we can expect to live normal life expectancy if we take care of ourselves with possible, i have hope.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Maestro

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Re: confused about life expectation
« Reply #19 on: January 03, 2007, 10:01:33 AM »
I think there is some good discussion here on this topic.  However, I think some questions arise.  For instance, do the people who post here and have been poz for a long time represent the "average" person with HIV?  Looking at the statistics, I would say no, they are at the edges of the bell curve.  However, as someone pointed out, it is different for each person. 

I think of my Uncle when I look at life expectancy and HIV.  What has HIV directly, or indirectly led him to?

Well, the viread caused his kidneys to almost stop working and the ensuing dizzyness caused him to collapse and break his hip.  The recovery from the hip surgery led to pneumonia in the hospital.  The long recovery led to another fall and a broken pelvis.  Without Viread I doubt this happens.  Without HIV, he isn't on viread.  so is his current condition linked to HIV?  Absolutely.

Then there are the other meds he takes.  The HIV or the meds has given him PN.  So for that, he takes Oxycontin 3 times a day, every day.  He also takes Nortryptlye (sp) for the PN.  Having HIV has really stressed him out so he takes Xanax on a regular basis.  The HIV meds cause upset stomach so he takes 2-3 different perscriptions for that.  Having the low cd4 count means he is also taking prophylactic antiobiots and antifungals.  There are other pills he takes on a less regular basis for assorted reasons.  Last I counted it was like 38 pills a day to a high of around 40 something.  He is also VERY anemic which may or may not be from the HIV. 

He has no energy, sleeps most of the day, is irritable, paranoid, and a bunch of other wonderful qualities.  This despite my best efforts to be there for him. 

Add all this up and he has absolutely no quality of life.  This is all due to the direct and indirect effects of HIV.  Will this have an impact on HIS OWN life expectancy?  I don't see how it could not.  I realize MANY, MANY people are doing well with HIV and are very productive members of society.  But at the same time you cannot deny that there is also a population of HIV patients who are just like my Uncle.  He is very wealthy and has access to the best medical care and none of this has changed a thing.

All that being said, I wish everyone here the best with there own ordeals!

Always,
M

Offline ademas

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Re: confused about life expectation
« Reply #20 on: January 03, 2007, 12:06:38 PM »
Nice post, Maestro.
I can relate on a much lesser scale.
I was infected in late '82 / early '83 (my best estimate, because that's when I had a period of very bizarre symptoms and illness, and is also the time I was involved with my first partner, who died in '93), and I went for many years with good health.  I started on the Crixivan/AZT trial in '94, and I'm now in my 13th year on HAART. 
Like I said, my health was very good for many years.
In 2000, the lipodystrophy started, and since then I've been diagnosed with PN, arthritis, psoriasis, & dupeytren's contracture--all autoimmune problems that affect my daily life.
At first my doctor would tell me these things had nothing to do with HIV, but I never believed him.  I come from an enormous family, and there is absolutely no history of these conditions in any of my relatives. 
I just think my immune system will be forever wonky due to the damage that was done before HAART was available.
Everyone's story is different.  I think there is good reason for hope--and a long life--for the vast majority of HIV-infected people (those with good medical care, who take care of themselves), and particularly those who were diagnosed more recently in the early-stages of their disease,
but I'm still mindful that there are many people like your uncle who aren't doing so well, and people like myself who fall somewhere in-between.
Still...life is good.
Sometimes I wonder if y'all would think my life sucks if you walked a few days in my shoes, but it really doesn't.  It certainly sucks compared to the health I enjoyed 6-7 years ago, but it's still good.  I try not to focus on the bad too much.


(p.s. I've used the "hit-by-a-bus" line myself, but truth be told...I've had a number of friends die in the past 10 years, and not a single one was hit by that proverbial bus.  They all died of AIDS.)








Offline Christine

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Re: confused about life expectation
« Reply #21 on: January 03, 2007, 01:46:36 PM »
Hiv is very individual as you can read from all the posts. Some people do remarkably well living with hiv, and for others the road is more difficult. I have fallen into the latter group.

What ever group you may fall into, the important thing is to take the best care of yourself that you can. Eat very well, exercise, get enough sleep, practice stress reduction, don't abuse alcohol, drugs, food, sex.

Be compliant with your meds, take prophylactic meds if needed, get your blood work done on a regular basis. Treat any psychological issues that may rise up. If you are spiritual, talk to your god/goddess.

Enjoy and cherish each day of your life. Surround yourself with love, joy, happiness as much as you can. Find what you are passionate about and do it today, don't put it off until tomorrow.

No one really knows how long they will live. The important thing is to live for today, prepare for the futrue, and accept what life gives you in the end with dignity, and hopefully no regrets.

Should you plan for your retirement? Absolutely. Will you reach retirement? No one knows that answer. Be proactive about your health, and live with hope.

Christine
« Last Edit: January 03, 2007, 01:48:26 PM by Christine »
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Jnm594

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Re: confused about life expectation
« Reply #22 on: January 03, 2007, 02:12:47 PM »
Quote
I no longer concern myself with trying to anticipate how long I'll live, only how I'll live while I do.

Quote
Be compliant with your meds, take prophylactic meds if needed, get your blood work done on a regular basis. Treat any psychological issues that may rise up. If you are spiritual, talk to your god/goddess.

Enjoy and cherish each day of your life. Surround yourself with love, joy, happiness as much as you can. Find what you are passionate about and do it today, don't put it off until tomorrow.

As usual those smarter than I hit the nail on the head.....Ditto to the previous posts, all of them.
When it gets hard I always listen to my favorite song of all time..........

http://www.youtube.com/watch?v=qJEYu3KgWCE

Offline Queen Tokelove

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Re: confused about life expectation
« Reply #23 on: January 03, 2007, 02:54:06 PM »
I couldn't have said it better, Christine.....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline zeb

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Re: confused about life expectation
« Reply #24 on: January 03, 2007, 04:14:02 PM »
Hi to all of you!

Thanks a lot for this much response! And yes I agree: every day should be a very good day full of love for the ones close to you and of course yourself.
As you probably have noticed I'm a newbie. So that's one of the reasons behind my questions.

The most important reason is that I want to see my daughter (2 yrs hiv-) and son (5 yrs hiv-) grow up and I want to take care for them and be there for them as much as possible. Even as a grumpy old man (in my golden years) I still want to be there for them (my two sweethearts).

The idea of leaving them too soon (that's how I feel it) really hurts me. I want to learn and love them so much


Offline DanielMark

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Re: confused about life expectation
« Reply #25 on: January 03, 2007, 04:18:10 PM »
What ever group you may fall into, the important thing is to take the best care of yourself that you can. Eat very well, exercise, get enough sleep, practice stress reduction, don't abuse alcohol, drugs, food, sex.

I would also like to say amen to that, Christine.

I am constantly amazed at the number of people who abuse themselves after diagnosis who decide to throw away any chance at living a decent life some to the point of death. Its heartbreaking to watch, is all I can say. I guess you can treat a disease, but no one can instill the will to live, unfortunately.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Ihavehope

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Re: confused about life expectation
« Reply #26 on: January 03, 2007, 04:18:15 PM »
Zeb

You will not leave them soon. Think that medication is so advanced now that instead of taking over 30 -45 pills a day like those who were poz in 80's we have advanced to one or two pills a day. Soon enough new drugs will be available and we will live longer lives. Your children will keep you alive. Stay strong.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Mike89406

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Re: confused about life expectation
« Reply #27 on: January 03, 2007, 06:01:26 PM »
Hi to all of you!

Thanks a lot for this much response! And yes I agree: every day should be a very good day full of love for the ones close to you and of course yourself.
As you probably have noticed I'm a newbie. So that's one of the reasons behind my questions.

The most important reason is that I want to see my daughter (2 yrs hiv-) and son (5 yrs hiv-) grow up and I want to take care for them and be there for them as much as possible. Even as a grumpy old man (in my golden years) I still want to be there for them (my two sweethearts).

The idea of leaving them too soon (that's how I feel it) really hurts me. I want to learn and love them so much



Zeb I understand you're concerns I felt the same way when I was diagnosed I thought it was just a matter of time til I die.

However you'll hear different sides of the story, and the media doesn't portray HIV as it is. What I've learned is HIV/AIDS is now a chronic illness rather than a death sentence as it was belived to be.

How you live you're life and certain lifestyle changes like diet, mental health etc.. will play a big part in you're outlook. With the advancements of today there is a lot to be optimistic about. The best thing you can do is become educated on HIV learn as much as possible and take care of you.

Yes there are always pitfalls in medical conditions but you have to decide if you're life is half full or half empty.
I decided a while ago that theres nothing I can do now about being HIV+ but there is a lot I can do now to live a normal healthy life from here on. The choice is yours in how you live you're life

Offline zeb

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Re: confused about life expectation
« Reply #28 on: January 03, 2007, 06:10:36 PM »
Mike,

thanks for your comment. Well, I'm not such a wild guy. I don't drink alcohol, I don't use drugs, I eat varied, and try not to get stressed. But you know... the love I feel for my two little 'dwarfs' makes me worry about their future sometimes...

grtz,
Zeb

Offline c69

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Re: confused about life expectation
« Reply #29 on: January 03, 2007, 06:14:51 PM »
Zeb, I sent you a PM.
I believe we live in the same country.

Kop op!
Je bent niet alleen.

C69
Meds since May 2006, Abacavir, Tenofovir, Reyataz & Norvir.

Offline Mike89406

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Re: confused about life expectation
« Reply #30 on: January 03, 2007, 08:59:05 PM »
Mike,

thanks for your comment. Well, I'm not such a wild guy. I don't drink alcohol, I don't use drugs, I eat varied, and try not to get stressed. But you know... the love I feel for my two little 'dwarfs' makes me worry about their future sometimes...

grtz,
Zeb

I feel you. I have a wife and 7 yr old daughter it's not easy knowing that someday that my little one will know that I have HIV and we have talked down to her age level to explain to her that I have sick blood. But its not certain how much she understands. Someday she will know the full extent of my health.

I have had to make adjustments in my career had Skin cancer, and Test cancer. There are limitations that I have to accept in life for now. Other than the conditions I mentioned  I'm very healthy despite starting meds 3 mos ago. It took 5 yrs of being diagnosed til I started meds. The average is 8-10 yrs from diagnosis if you are average health.

I still have my bad days where I think about my condition. Nothings a guarantee I know but know this it takes time before you will be at a level of acceptance. Everyone is different on how long, but I always think of the phrase "when life gives you lemons make lemonade".


I want to be there for my kids and theres not a day that goes by that I dont reflect some way or form on how my family has kept me positive. Spending time with my wife daughter, and now recently my dog they keep me going, they make me want to be better and live my life to the fullest. They are the ones that have got me through my darker days. And I believe I am healthier as a result of they're support.

My wife helped me look for support groups and that has helped me with invaluable information about HIV and that is my support network. Even though I dont need it all the time i look forward to going and learning from these 15-20+ yr vets of HIV. 

Theres really no clear cut solution but there are a lot of people here that can help with diverse knowledge. And those kids of yours they can be a blessing for you and thew rest of you're life. I plan on bypassing 70.

Offline Iggy

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Re: confused about life expectation
« Reply #31 on: January 03, 2007, 09:34:55 PM »
.
« Last Edit: January 09, 2007, 11:39:23 PM by Iggy »

Offline Maestro

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Re: confused about life expectation
« Reply #32 on: January 03, 2007, 09:46:58 PM »
Speaking of worrying about stuff...There was an article in Time (i think) a few weeks ago about the things we worry about.  The author went on to talk about how if you are scared of a sky diving accident, then not sky diving would bring your chances of dying in a sky diving accident to Zero.

However, as one reader pointed out in the letters to the editor section, your risk does not drop to Zero.  What if you are walking on the street and someone who IS having a sky diving accident lands on your head?  Unlikely, but could happen!

Just thought that was amusing...

M

Offline Mike89406

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Re: confused about life expectation
« Reply #33 on: January 03, 2007, 10:49:54 PM »
Zeb I have known a few people 20 yrs POZ and healthy enough to not need HIV meds, and then again I have seen the opposite people looking like death warmed over but inevitably healthy like the guy that looked like a skeleton in the article.

Offline megasept

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Re: confused about life expectation
« Reply #34 on: January 04, 2007, 01:17:45 AM »
I wonder about transfat in my fries. I drive my cars forever. I don't carry credit card debt more than a month. I take a baby aspirin to keep my arteries unclogged for when I reach 70 in 20 years. I am already poz 16 years. Silly? Maybe.

At 70 i would have had hiv for 36 years! That's possible. I don't know or really care that much whether it's likely. Not living with a preventable disease (OK, I screwed up at least once!) is more important than how long I live. The poz guys I saw sick in bed in the 80s are dead. All but one of the guys I visited in bed (ahh, let me rephrase that) a few years later are still here. Tough birds with pretty good MDs, and pretty stinky credit reports. That's good enough anecdotal evidence for me that HIV is not a "death sentence", and to prepare for tomorrow. As Iggy reminds us, above, their lives are difficult, but mortality, unlike happiness, is a yes/no proposition.

When your chart is stamped "DECEASED"  :o you won't be in a position to see where your individual dot landed on the big Mortality Bell Curve. This is really a spiritual question as much as medical (outcomes) scientific (demographics). Quality of life is everything. Each of defines that in our own way. Self-discipline and commitment make a huge difference, especially for those in the early or middle years of HIV infection. That's why we spend so much time and energy here, isn't it?

 
« Last Edit: January 04, 2007, 01:21:12 AM by megasept »

Offline RapidRod

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Re: confused about life expectation
« Reply #35 on: January 04, 2007, 03:19:48 AM »
In April of 2007 I will  have been positive for 23 years and will have been diagnosed with AIDS 2 years. I will have lived over 20 years longer than most of my friends. I have lost over 15 school mates that I graduated with in high school. Deaths that are unrelated to HIV. I don't put expectations on life spans. Why would you? I just live every day of my life that maybe there will be no tomorrow. I enjoy my life, and I go by the saying, "You were born to die." I don't fear death and I never really sit around thinking about it. When my day comes, I will still know that I've out lived most of my friends.

Offline Bartro

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Re: confused about life expectation
« Reply #36 on: January 04, 2007, 04:16:09 PM »
One must not pay too much attention to averages and statistics.  They can be very misleading.  If one person makes $10,000 dollars a year and another makes $1,000,000 dollars a year their average income is $505,000 dollars a year.  A figure which neither can relate to very well.  When life expectancy is figured I assume those who refuse or choose alternative treatments, are non-compliant with their drug regimens, have no treatment available or are diagnosed after the disease is very advanced are included in those averages.  Those worst case scenarios can drag the averages down dramatically. 
« Last Edit: January 04, 2007, 04:48:25 PM by Bartro »
Rusty

Offline David_CA

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Re: confused about life expectation
« Reply #37 on: January 04, 2007, 04:41:35 PM »
You know, there's one thing that bothers me about discussions like this.  My own Dr. is guilty of it.  I read it often here on the forums.  It's that "I'm more likely to get killed by a bus than by HIV".  This wouldn't be such a problem 'cept I have a bus!  According to whatever stats are used to figure this, I should probably sell my bus and live longer!

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline ACinKC

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Re: confused about life expectation
« Reply #38 on: January 04, 2007, 04:46:10 PM »
I got news for all of you guys......As soon as you pass the birth canal, you're on the way to the grave!  So, dont sweat it.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline zeb

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Re: confused about life expectation
« Reply #39 on: January 05, 2007, 09:56:16 AM »
Hi all,

Thanks for so much views and info! Meanwhile I'm reading around and I cannot find a clear cut answer.
Though I see the tendency as follows (and please correct me if I'm wrong):

- The people who are positive since the 80's represent the ends of the bell curve (they are from the pre HAART era);
- The people on HAART are in general doing fine (as long as they have an healthy life style) but there are significant exceptions;- Of course HIV is not just an illness; so comparable with other chronic diseases (like diabetes fro example) there are more health complications and there's a higher mortality risk;
- Of course statistics are statistics and each person is different...

Is my view on being HIV infected in a society where there's access to healthcare in general correct or am I completely wrong!?!?

(as mentioned in this string, I also hear from people (mid 30's) their Dr. tells them that as long they live a normal and healthy life the chance of getting old and grumpy is more depending on this guy who owns a bus ) ;D

Offline Iggy

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Re: confused about life expectation
« Reply #40 on: January 05, 2007, 10:05:29 AM »
.
« Last Edit: January 09, 2007, 11:38:43 PM by Iggy »

Offline zeb

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Re: confused about life expectation
« Reply #41 on: January 05, 2007, 10:13:24 AM »
Hi Iggy,

Thanks for the quick response.
Additional question to you: in what way(s) do you regard HIV as different from otheer chronic diseases (i also sense it different but I'd like to know your view)

grtz, zeb

Offline Iggy

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Re: confused about life expectation
« Reply #42 on: January 05, 2007, 10:26:28 AM »
.
« Last Edit: January 09, 2007, 11:38:11 PM by Iggy »

Offline zeb

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Re: confused about life expectation
« Reply #43 on: January 05, 2007, 11:31:25 AM »
Hi Iggy,

that almost sounds like 'depending on the age you become infected it will / or will not be a chronic disease'.

I assume for a 70 year old it will be different then for a 20 year old if I interpret your words in a correct way.

Of course the question is 'how long can we keep the virus at bay'. I don't know what medical sciences estimate but from my point of view it often sounds to me like:

01. Live in a healthy way
+
02. Take your medicines in time (adherence)
+
03. And if the cocktail fails; try another combination for the next - let's say 7 - years

If in this way life can be prolonged for 30 to 40 years I'd say as a 40 year old 'Okay, it seems chronic to me'; as a newborn it will be a complete different story.

grtz
zeb

Offline skipmco

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Re: confused about life expectation
« Reply #44 on: January 05, 2007, 12:09:24 PM »
Eh my doc told me to find something more glamorous to die from...such as prostate cancer or old age.  Do what he/she says, take your meds, excercise and live life. 
"Dance like nobody's watching; love like you've never been hurt. Sing like nobody's listening; live like it's heaven on earth." - Mark Twain

Offline koi1

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Re: confused about life expectation
« Reply #45 on: January 05, 2007, 12:59:49 PM »
Well,

When I first found out about my status a fog set in for a few weeks. When the fog cleared my first inclination was the thought that death was just around the corner, the you really did it this time syndrome. And it took lot of people like counselors, medical professionals, and friends, and my aidsmeds support group to slowly convince me that I have a long life ahead of me. I still remember the lead nurse's comment "Give us three months, you'll see how great you are going to feel. We see people who are a lot worse of than you when they come to us, and they are doing great. You are going to live to be a crusty old man like my husband."

Now you can dwell on the negative and say that life with HIV is crappy. Well duh, it ain't no walk in the park. That's for damn sure Denise. But beyond all the crap is an essential drive to want to live. Let me tell you the story of my uncle. He was that crusty old man the nurse is talking about. Alvino was told by his doctor 40 years ago to stop smoking or he would start losing his teeth and die in the next 20 years. One by one his teeth were pulled out because of course he never stopped. When he was 50 he was told to stop drinking because his type two diabetes would kill him if he didn't quit. Alvino is pushing ninety now. He is still a hopeless smokin' alcoholic. He still lives at home with my aunt and my cousins because no nursing home can stand him. The doctors are amazed that he still walks around and manages to go drinkin' with his homeless friends. He disappears for a few days but always manages to come home for a warm meal and clean clothes. Never been hospitalized, still sees well enough not be hit by a bus. My aunt, bless her soul still puts up with this crap. Alvino has buried three of his sons. One who didn't drink or smoke. He has no plans to die any time soon.

The point to the this story is that we don't know how long we will live, and doctors can only give guidelines on how to live a healthy life, but even that doesn't guarantee longevity. Wanting to live is the most crucial factor. HIV complicates things, and very few of us are built like my Uncle Alvino, but most of us on this site have a will to live, and that makes all the difference.

rob



diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline allanq

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Re: confused about life expectation
« Reply #46 on: January 05, 2007, 02:08:35 PM »
Zeb,
You seem to be spending a lot of energy focusing on the life expectancy issue and on whether HIV is a manageable or unmanageable condition. You can make yourself crazy with this line of thinking. The truth is that over the the course of years, some people with HIV will do very well, some will have a variety of problems but manage to live relatively normal lives, and others will have to deal with very major problems. As individuals, all we can do is to take an active role in the treatment of this disease and do the best we can. We need to be aware of side effects and lab abnormalities and deal with them sooner, rather than later. For example, if you're on Viread or Truvada, you need to make sure that your kidney function is monitored regularly. (After more than two years on Viread, I started developing alarmingly high creatinine levels and had to stop taking that drug.)

There are many more drugs available now than there were ten years ago, and in most cases there is no longer any reason to be on some of the more toxic ones, such as d4T or even AZT. I think this will lead to a decrease in some of the side effects that many people have experienced, such as wasting, buffalo humps, and neuropathy. Many drugs still adversely affect cholesterol & triglycerides, liver function, and kidney function. There are often ways of lessening these effects, whether through diet/exercise or through medications such as Lipitor.

My advice is to forget about all those statistics and "manageable" vs. "unmanageable." You're an individual and have no way of knowing in what part of that bell curve you may fall. Do the best you can to keep aware of the available drugs and side effects, adhere to any drug regimen you may go on, and make sure you have a doctor who is knowledgeable about HIV and with whom you can communicate.

Good luck.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Cliff

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Re: confused about life expectation
« Reply #47 on: January 05, 2007, 03:09:30 PM »
I guess my feeling is that we can't really make a determination of this being a chronic or manageable condition for at least 50-75 years or so....until we start seeing those who actually lived with it for an entire (and normal estimated) lifespan.
50-75 years seems like an awful long time, given how quickly medical science/technology progresses.  I don't think we need that much time to determine the full impact HIV meds have on the human body (with reasonable certainty).

In any event, I agree with Allan, Zeb, you can spend a lot of energy on determining how long you have to life or whether or not HIV is manageable (and you'll get varying opinions about that), but none of those answers will change anything for you.  Like Allen says, stay on top of your health.  Manageage your disease however you need to, in order to make sure you have the best possible outcome, for whatever life/this disease throws your way.  That's about all that you can do.  The rest is out of your hands.

Offline zeb

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Re: confused about life expectation
« Reply #48 on: January 07, 2007, 12:19:10 PM »
Allan, Cliff,

Thanks for your contributions. I really don't want to be a pain in the ass. Of course I know you need to make the best out of it, Meanwhile I realize by saying this that 'making the best out of it' also sounds fatalistic to me.
You're right, I'm really getting mad with all the figures and articles on the web. Nevertheless I still am eager on this one. Why? well I'm not really worried about myself, I want to be here as long as possible for my kids.

As another guy pm'd me: looking at the kids makes you happy and sad at the same time.


Offline ChaplinGuy

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Re: confused about life expectation
« Reply #49 on: January 07, 2007, 01:30:15 PM »

Let me just add my own personal "ah-ha" moment perspective to this discussion, though I agree it's such a tough issue to wrap your brain around. When I was home for Christmas visiting with family this year, I just kind of realized that so many people I know in my nearly 30 years have passed for one reason or another. Our next door neighbor was hit by a car (walking in our own neighborhood), another neighbor died suddenly of a heart attack (he was 52), a friend of mine recently died of an accidental overdose of pain killers, and a friend from high school was killed in a plane crash.

I guess the thing that I take away from it is ... why am I any different? It's life. We experience death as a way of understanding how best to live. Those of us who are living with HIV I think (hope) have that much of a better understanding that no one is given a life expectancy guarantee. The universe is too random to get caught up in it.

I heard a great quote about the architect Frank Llloyd Wright the other day. A friend once said that "he seemed to be 200% alive" ... I now like to be 200% every day and remind myself it's good to be alive today.

 


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