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As A Person With HIV, How Do You Deal With Long-term Complications Of HIV?

A myHIVteam Member asked a question 💭
Geneva, IL

Long-term HIV infection may lead to certain complications and illnesses such as cancer, heart disease, neurological disorders and so forth. As a person with long-term HIV ...how have you handled this both mentally and medically?

February 6, 2023 (edited)
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A myHIVteam Member

I'm 62 and have been living with HIV for over 30 years. While there are certainly issues with long term use of HIV medications (especially the older ones) and there is evidence that people with HIV show accelerated signs of aging, I've found that attitude, exercize, good nutrition all contribute to a healthy life with HIV. I started a regiment of strength training, biking, walking and a low carb/sugar, protein focused diet has not only helped me lose weight (195 to 170) but also gain muscle mass and my lab results are better than they have been in years. Here's a 1 year before and after. As far as my mental approach, I don't stress over things I cant control and focus on living my best life controlling what I can and am willing to. Enjoy life!

February 6, 2023
A myHIVteam Member

I was diagnosed in 2002. I have no idea how long after seroconversion I had been infected. I do know that my VL was 1 million. I will never forget that number. Now on Biktarvy my last VL was just 31 ! Healthwise, I have had PCP Pneumonia and survived ! Cellulitis and survived ! Shigellosis and survived ! Major Depressive Disorder and under control ! Lost my beloved partner of 10+yrs. and survived ! How ? I had a support group of friends and family. I changed my diet. I got a part time job, which is 1/2 mile one way. I walk to and from every time I work, 4 xx’s a week plus the job is somewhat physical, so my exercise +. I also rest, take care of my dog and see friends when schedules meet. I have slight lipodystrophy, and my ankles get sore. But, I am also 68 and let’s be realistic. I have always had good hygiene and good genes. BUT, taking my Biktarvy is THE most important thing to me.

February 8, 2023
A myHIVteam Member

I'm 56. My work takes 50 to 60 hours a week. I was diagnosed Christmas 1998. I do notice a lot more allergies, colds and some odd things like high cholesterol even though I have a great diet and I tend to be incredibly active and athletic which I think saves me.. hard to say if it's the disease or the long hours or the age or a combination of all that does bring me down sometimes. The only real side effect I've noticed is slight dysmorphia. No matter what I do I still have a bit of a gut. But I swear being active keeps me going and healthy.

February 6, 2023
A myHIVteam Member

I haven't had much health problems.i do get the side effects of my medication.i have a stomach hernia for a while it doesn't hurt, at some point I will have to have surgery to remove the hernia in the future.i am thankfull to God to live this long and live many more years to come.I do have a hard stomach not sure if any thing can be done about that

February 6, 2023
A myHIVteam Member

@A myHIVteam Member - Thank you very much for this great opportunity to hear the experiences of those who have lived a long time with HIV.

I was infected in late 1987, and waited until 2012 to start antiviral therapy. It was all under an HIV specialist’s care. My viral load was roughly 1000, and my CD4 count was > 500.

In 2012, my doctor since the late 1980s thought it best to start AVT to curb the perpetual activation of my immune system. The arguments against AVT had pretty much disappeared with the improvements in the medications. After a few regimens, I wound up on Biktarvy, and I have had no trouble with it.

At 59yrs, I have a gut, stiff joints, and I am loosing hair, teeth, and vision. Is it HIV, other medications, aging, slacking off, all of the above, none of the above…. I’m not sure. At least I’m alive to experience it. 🤠

February 6, 2023

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