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Author Topic: How normal is normal?  (Read 655 times)

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Offline gcr.mty.mx

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How normal is normal?
« on: July 01, 2019, 06:52:58 pm »
“People living with HIV are living close not normal lives” VS “People living with HIV are also facing cancer as they age”

Hi everyone!

Visiting this website today I found this article on aging ‘pozzies’ and cancer. This article is very discouraging to me.


Four years in, most of my days now I feel confident that remaining undetectable and with a healthy lifestyle (which I try everyday to improve with healthy diet, excercise, etc.) I have great chances of living an almost normal life. I can go weeks now without thinking about my HIV. Taking my pill has become a little task in my nighttime routine, I do it unconsciously.

Respect  to people like Sean McKenna who have dealt with battles associated with HIV, you are true warriors. Every now and then I visit this website to keep up with news and developments mostly. Reading about people like him spark a great deal of anxiety for me. I feel like I’m living this lie. Why are we being told that we can live a close to normal life when there are so apparent chances of developing cancers, kidney disease, depression, etc. ? To me this is nowhere near to living a close to normal life.

I don’t mean to come across alarmist, but makes me wonder if I  should be doing more to screen for any further complications? Is treatment and semestral bloodwork enough? Should I try to increase my insurance coverage to cover these conditions? (This last one is a big one as my private insurance does not cover my HIV)
Should I remain celibate the rest of my life and avoid HPV transmission? (Have only had one partner after diagnosis and aware that it sounds a bit dramatic)

What is the measure on living a close to normal life?
Are there people that actually age close to normal?

Would love to read your comments on this one.

Stay strong!

G

01/16 diagnosed
03/16 cd4 750 VL 150,000
03/16 truvada+ritonavir(norvir)+reyataz
06/16 cd4 -- VL UD!
09/16 truvada+ritonavir(norvir)+duranavir(prezista)
03/17 cd4 -- VL UD

Offline Jim Allen

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Re: How normal is normal?
« Reply #1 on: July 01, 2019, 07:31:25 pm »
My two cents;

You are going to die ...

Enjoy life whilst it lasts, don't waste it getting stressed about what might happen outside of your control. Now if you what to try and, live longer or healthier than focus on reducing your controllable factors, some of those factors impact the group (PLHIV) statistically more than the general population like smoking, drinking etc. 

An example was the heart risk publication the other day https://forums.poz.com/index.php?topic=72640.0

Now I was personally looking (reflecting) on additional health concerns & HIV status a few months back and how lucky I am to be living with HIV. Why because it's manageable, a pill a day and, because of my HIV status I get routine health checks every 6 months that otherwise i simply would not get, including checks on BP, Kidney function, Liver, Cholesterol, etc etc

Not many people in the population can say they have bi-yearly health screenings. This additional care means if something should come-up it can be treated or prevented early giving me a best possible outcome when shit does happen, and this did happen when my additional care picked up on some increasing blood pressure concerns over time despite excellent cholesterol, so had a 24 hours monitor done,  confirmed hypertension & started medication

High blood pressure is often called the silent killer as it can be asymptomatic for a long time, yet causes all sorts of serious & deadly health issues down the line I can now work to avoid yet an HIV negative peer might not discover for many years, sadly it means my early detected BP issues will be added to a stats for people living with HIV, its a touch skewed though including my results as it has fuck all to do with HIV. ;)

Quote
Four years in, most of my days now I feel confident that remaining undetectable and with a healthy lifestyle (which I try everyday to improve with healthy diet, excercise, etc.) I have great chances of living an almost normal life. I can go weeks now without thinking about my HIV. Taking my pill has become a little task in my nighttime routine, I do it unconsciously.

Cool, perfect.

Quote
Why are we being told that we can live a close to normal life when there are so apparent chances of developing cancers, kidney disease, depression, etc. ? To me this is nowhere near to living a close to normal life.

Why not? Depression, cancer, heart disease, car accidents etc etc etc happens to people, it also happens to people living with HIV, it does not surprise me depression is more common in PLHIV, would be better with better support at diagnosis and, more holistic care but that's another story and, only part of the problem ... Now all these things, of course, a lot of people survive it but ultimately something will kill you one day, as nobody lives forever. That's part of living, you are working on reducing your controllable factors right?

As a group, we might be at a higher risk for things, but it's also a very wide group of people with pre-existing risks or post risks that you might not share or take into account like conclusions from studies with results (people) starting treatment in the '90s (This drive me insane)

A stupid example would be if I said people living with HIV are at greater risk of lung cancer, okay well keeping in mind you are an individual stop smoking is the answer, stressing about it every day beyond that is not the answer. 

Quote
I don’t mean to come across alarmist, but makes me wonder if I  should be doing more to screen for any further complications? Is treatment and semestral bloodwork enough? Should I try to increase my insurance coverage to cover these conditions? (This last one is a big one as my private insurance does not cover my HIV)

Well as you age you should be considering upping healthcare & certain screenings regardless of HIV anyway.

Quote
Should I remain celibate the rest of my life and avoid HPV transmission? (Have only had one partner after diagnosis and aware that it sounds a bit dramatic)

Vaccinate if available where you are, reduce risks if possible. End of the day life does come with risks, it's about reducing the risks to acceptable levels and, beyond that learning to accept the remaining risks as part of life.

Quote
How normal is normal?

Maybe normal is not the right word. Most people will have one or another manageable medical condition in life, so that's average or normal. Live long enough something will be broken or in need of care.  Treated HIV is neither difficult to manage medically and, life span wise it fairs very well compared to a lot of other things. 

Jim

« Last Edit: July 01, 2019, 07:54:44 pm by Jim Allen »
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Offline MarkintheDark

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Re: How normal is normal?
« Reply #2 on: July 02, 2019, 03:39:24 am »
Hi G - Since Mr. McKenna and I were diagnosed about the same time, there are some other factors at work that folks with newer diagnoses don't face.  I think those should be taken into consideration vis-a-vis "normal."

Long term survivors come from a time prior to the availability of what was called HAART, now simply ART.  The only med available at the time was AZT, which was toxic to many.  Then came the cocktails with their plethora of side effects with which some of us are still dealing, such a lipodystrophy.  Sometimes, too, the side effects were so bad, some of us just gave up, as I did, on treatment.  Even today we know the effect of quitting meds.

Speaking to the depression you mentioned - not that any PLHIV are immune to it - again, I think it's a matter of perspective.  Depression and even PTSD are more common, as one might expect, among an LTS population that watched so many friends die horribly. 

On diagnosis, many of us were told to put our affairs in order.  Further, being told I had 5-7 years to live, I didn't plan for a financial future beyond that time frame ending around Y2K.  My decision was to do what I loved, travel, while I could.  I'm glad I did.  In fact, it did become almost impossible for me to summon the stamina to travel after that.  But it ate up my nest egg...and I've struggled financially since.  And, yeah, that's a source of depression for which I've sought treatment. 

That being said, your mental health is no less important than that of LTS.  If you're having difficulties, make use of mental health resources.  Another bonus, that quarter century on, is that there are psychologists and psychiatrists who specialize with PLHIV and their specific issues.

What I'm saying is that we've come a long way since his diagnosis and yours, 23 years later.  We're a lot more sophisticated, imo, in monitoring side effects.  We certainly know a lot more about HIV and aging.  In no way am I being minimizing or dismissive of your concerns.  If they're giving you pause, they're valid.  But, for perspective's sake, it's nevertheless ok to just go and live your life normally.  Medically, keep up on your inoculations such as pneumonia, flu, MMR and, yeah, HPV.  If you're doing well on your meds, you're doing well on your meds.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline leatherman

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Re: How normal is normal?
« Reply #3 on: July 02, 2019, 08:12:47 am »
“People living with HIV are living close not normal lives” VS “People living with HIV are also facing cancer as they age”
sounds like a freudian slip there; but I'm going to assume you meant to type "close to normal lifespans" ;)

I would point out two things. That would be close to normal length lives. As a PLWH on medication I am healthy and lead a very normal life.  As a PLWH on medication, I am looking for to a normal length lifespan. Studies have actually shown that PLWH are starting to lead healthier (and possibly longer) lives than many people due to the medical attention we are receiving vs. someone who doesn't seem to have medical issues and rarely sees a medical professional.

Second, while “PLWH are also facing cancer as they age” may be true, cancer doesn't happen to everyone. matter of fact cancer doesn't happen to most people. Personally I look at medical warnings like that, not assuming that I'll be one of the 5% or 10% who have that issue, but as something to keep an eye out on so I could detect the symptoms early and have a better chance of survival and recovery after treatment.

Four years in, most of my days now I feel confident that remaining undetectable and with a healthy lifestyle (which I try everyday to improve with healthy diet, excercise, etc.) I have great chances of living an almost normal life. I can go weeks now without thinking about my HIV. Taking my pill has become a little task in my nighttime routine, I do it unconsciously.
Thirty-five years in, I am confident that I am living a normal life and am expecting a normal lifespan. I eat lots of potato chips and drink a large amount of Coke daily; but I am physically fit and quite active along with exercising regularly, and I quit smoking 10 yrs ago. I think about HIV nearly every day; but that's because I advocate for PLWH and do a lot of volunteer work with the Ryan White program in two states.  I've been taking meds for about 9,800 days now (ie 27 yrs) and that health routine is as unremarkable as brushing my teeth or putting on deodorant every day.

what actually worries me now, since it seems I got more genes through my mom's side of the family, is that I'm going to live as long as my maternal Grandmother, who will be turning 102 in early August. I nearly died of AIDS several times in my 30s, but now in my late 50s, I have lived more years than either of my 2 late partners, my father, and my paternal grandfather. I quit smoking and I exercise daily because it looks like I could very well only be halfway through my life and might still have another 50 yrs or so. oy vey! ;D

if you're doing what you can to stay healthy and adhering to your daily HIV meds then, like me, you should look to your relatives about how long you might live and use these kinds of studies/reports, not to be fearful but to stay pro-active about your health care.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Tonny2

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Re: How normal is normal? What
« Reply #4 on: July 02, 2019, 08:54:11 pm »


       ojo.    Hi G, I'm able to read your whole post nor the thread. All I can tell you is that hat I was diagnosed when I was 32 years old, 24 years later, even when we, the lots, we were taking very toxic meds, I haven't gotten any type of cancer. What I have gotten is 24 years of happiness and love from family and friends, I'm even a tio abuelo, OMG!!!, I'm already old, and maybe ready to die, because I lived every day of my life since my DX, at the fullest, because I was told that when diagnosed, that I would live just two more years...we all, are going to die for sure, we don't know when, tho, all that we have to do is enjoy life while we can, and this is for everybody, positive and negative people....good luck.                                          ojo

Offline harleymc

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Re: How normal is normal?
« Reply #5 on: July 02, 2019, 09:52:46 pm »
A lot of the 'risk of higher rates of cancer or heart disease and certainly anxiety and depression' can be managed.

For instance smoking rates and alcohol consumption are on average higher in people living with HIV than the average for people living without HIV.

So what do we do, we stop smoking (if we ever have) cut down on or eliminate alcohol.  We talk to our doctors about healthy diet, exercise and the pros and cons of going on statins or blood thinners. We seek treatment for our mental health.

So while, on average, we may be more susceptible to other co-morbidities we have a lot of tools at our disposal to live well and long.

Regarding HPV, get vaccinated, same applies for Hep B.

The new normal might just be being a bit more proactive, can't hurt to have a bit more control over our lives.  :)

Offline Loa111

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Re: How normal is normal?
« Reply #6 on: July 03, 2019, 03:11:04 am »
The hiv nurse at the ID clinic told me of a study in Germany where people with HIV are living up to 5 years longer than neg people, due to the regular blood work and doctors screenings. I’ve no reference or links to this study, just 4 months ago he mentioned it.

Offline Pirata

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Re: How normal is normal?
« Reply #7 on: July 03, 2019, 07:40:43 pm »
Every time I read you guys, it gives me more and more hope, lots of love for you all

Offline wardp

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  • Posts: 130
Re: How normal is normal?
« Reply #8 on: July 04, 2019, 08:18:50 am »
OMG. why put yourself through all this. Avoid reading negative articles ....enjoy your life....who knows what tomorrow Brings....answers on a postcard please!
Diagnosed 20,July 2017. Cd4 289, 21% vld .3,462 Started atripla 4 Aug 2017 5oct 2017 cd4 384 21%, vl ud less than 20. Switch to complera 4 Nov 2017 switched to stribild 15 the Nov. Switched to truvada efavirence 200mgx2 14 Dec 2017, 2 Feb 2018, us cd4  466, 25%  CD 8 ,595, 32%..1 may 2018
switched  to instgra truvada.7th june switched to truvada  nevirapine stavudine. .21 june switched to truvada nevirapine. X 2 a day...9 aug 2018 ud. 2n Nov 2018 CD 4. 455..22.70% 13th Nov switched  to lamivir and nevirapine  due to kidney issues...jan 10,2019 UD..may 13 2019 ud  cd4 482 28%

 


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