POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: jm1953 on June 18, 2015, 09:44:26 pm
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I've lost four very close friends in the past two years, all long term survivors, around 25-30 years Poz. Two died of kidney failure, the other two heart complications. My very close friend in California, also LTS, has been in the hospital about four months this year with multiple complications the doctor's say due to immune deficiency. The major problem is his heart working at an EF of about 30% with ICD. It was 12% a couple of years ago.
I'm feeling badly about these losses as they all were my very close friends. The pain of losing someone to AIDS is still as intense for me as it was back in the 80's and 90's and brings a lot memories back and the sadness.
I've had a multitude of problems as an LTS, probably the most significant learning I'm approaching Stage Four Chronic Kidney Disease.
It seems LTS are dealing more and more with heart, kidney or other major organ issues. I don't know, I'm just wondering if any of you have been sadly loosing some of your LTS friends in the last couple of years? I share your pain if you have.
The article I attached is from POZ Magazine about a study concerning AIDS mortality or survival in three groups comprised of about 20,000 subjects based on when they got HIV. It is worth a read to see where you fall into the mix.
I'm starting to loose hope.
June 15, 2015
Here is the Article:
Post-AIDS Diagnosis Survival Rates Still Not High Enough
Five-year survival rates after an AIDS diagnosis have improved dramatically in the modern era of HIV treatment, but there is still great room for improvement, MedPage Today reports. Publishing their findings in the Journal of Infectious Diseases, researchers analyzed data from the San Francisco Department of Public Health on 20,858 people diagnosed with AIDS during three periods: 1981 to 1986, when there were no HIV treatments; 1987 to 1996, the era of mono- and dual-therapy treatment; and 1997 to 2012, the triple-cocktail antiretroviral (ARV) era.
There were 3,002 people in the first period, 14,097 in the second, and 3,759 in the third. By 2012, 17,099 people had died, including 2,957 in the first period, 12,569 in the second and 1,573 in the third, or a respective 98.4 percent, 89.2 percent and 41.9 percent. The five-year survival rate leapt from 7 percent in the first era to 18 percent in the second and 65 percent in the current era.
The study authors made a push in their paper for better prevention and treatment efforts to bring up the current survival rate. Further, it is possible this rate is worse for people diagnosed with AIDS in the country as a whole, as San Francisco has a comparatively good care system for people with HIV.
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I'm so sorry to hear about the loss of your LTS friends. It brings up all the losses from years passed.
My personal belief is that LTSers have more complications than the overall population because their bodies have to work to fight the virus -- even if one's viral load is undetectable. We think that a pill and a undetectable viral load makes everything better. And it does make a lot of things better, but I think there are long-term consequences we do not understand.
Also, just getting older has its share of health issues. :(
Henry
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Hi Jm,
Sorry to hear about your friends and your own health problems,
I hope things improve for you.
You bring up a very good point,when I read my lab results on the portal
I pay attention to my organ function results ,liver ,kidney ect.
I used to be all over my cd4s and make sure I'm still UD,
Now I jump to my lipid panel and the others first.
Age and HIV....
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Jm,
Sorry to hear of your loss of LTS friends. not only do we have friends and /or family with hiv/aids to worry about and witness/help with their health issues, we also have become the age where we are loosing parents, aunts uncles co workers to just old age and other diseases..
it is life, the planet and the human race, modern medicine allows people to live longer than ever…so awesome..we grow and learn and live and love and time goes by and all of a sudden you say heck i am over 50 now and i still feel so young in my mind!
it is stressful. and we all know stress and anxiety harms the body mind and spirit..the whole existential quandary and mortality…
a lot of the time it is hard to be centered and anxiety free..and when one does find them selves "happy" it is kind of like…wow..i smiled! or i feel at peace..cool..
"be here now" is hard to think about at times but that is really all we have no matter what age we are..love every minute of it..
on the kidney note…
did you know that welbutrin is one of the only antidepressants that has a kidney warning?!
the kidney thing with me is stable for now..although i have not had any labs in about 5 months ..got so tired of worring about it i put my labs off until i go in a few weeks.. my last GFR was 46? biopsy was clean..so what to do besides eat well and question any new meds prescribed..
welbutrin should be dosage adjusted.found that out when it was prescribed to me in January and i had side effects and started doing research...i forget the mg. i have a chart of antidepressants and CKD..i think there are only 2 on the whole list with kidney warning and welbutrin is one…i'll look for it in the depths of my computer files if you want..
anything to not harm them any further..best to you
peace
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Current loss always trigger memories and feelings from the no treatment years. My current health problems are all because off the excellent treatment I Have been lucky to receive. However that does not lessen the fact although alive my body is a wreck .
Sometimes just keeping on is remarkable..
Thanks for the article it is stabilising to me to see this work & realise I am part off a group.
All the best to you
M