I will be 64 next month and living with HIV for 36 years. I had a lot of illness at the beginning of my diagnosis in 1990 when I was only 39 years old. I thought I'd die soon and never see my son grow into an adult or see 40 years old myself. In 1998 when I realized I may be here longer than I had planned for due to the new anti-viral that had come out, I was already retired at such a young age and wanted to do something else other than what I'd been experiencing for the past decade. I put my face out there and spoke in many schools so others may not contract HIV. Now all these years later I...
Nancy Duncan's blog
So I recently spiked a slight viral load and was unsure why because I never skip doses. I've been undetectable since 2003. I was told if you don't skip doses you won't become resistant to your antivirals. Not true for me. I have been on the same regimen for 15 years: Kaletra and Epzicom. My doctor did a genotype to identify my resistances. I knew already that I had a lot and it turns out I'm resistant to 75% of all that are currently available. So before anything gets out of control I will be switching to Presista, a Norvir booster and Biktarvy. I hope this will work for me and get me back to...
I had an afterthought tonight. My son's father passed away about a month ago. We hadn't been together since 1984 so it wasn't hard to deal with, but it was sad because he was my first everything. The life we shared seemed like a lifetime ago. My son and I were kind of shocked because though he had been ill with lung problems for a long time, he passed away suddenly and we didn't expect that. So earlier tonight I was thinking about a phone conversation I had with my ex-husband back in 1990 when I was first diagnosed with HIV. He was telling me he wanted to take full custody of our kid cause I...
Some think HIV is just a chronic manageable disease with a one-pill-a-day solution. Well it's not like that for all of us, especially long term survivors aging with HIV. I cannot do the one-pill-a-day regimen due to resistance. HIV treatment works well and keeps us undetectable and our immune systems healthier, that is true. But we have to live every day with the long term side effects of the early meds, depression, anxiety, isolation, memory loss and PTSD from the hell many of have been through. I know any LTS can relate to what I'm saying. I'm grateful to be aging with HIV because the...
I think as people age with HIV our treatment plans will become somewhat different than when we were younger. I believe it's important to have a primary care doctor and specialists working together with our HIV doctor because long term HIV causes accelerated aging and comorbidities. Age related factors can complicate HIV treatment in older adults and our immune systems may not recover as well or quickly. Since we all want to stay as healthy as possible while aging it's important to stay on top of not just our t-cell count and viral load detection but to also be aware of and monitor other health...
My HIV advocacy journey has been twenty plus years in the making, and one I never thought I'd see. I contracted HIV 34 years ago and was very ill for many years. Death loomed over me for several years after my diagnosis in 1990, and I didn’t think I was going to make it. However, I managed to hang on long enough for the new antiviral medications that came out in 1996 and they saved my life! I was so grateful to have been given another chance at living, so I wanted to give back in some way and it was now my time to step up and help make a difference in my community. I started by sharing my...
I sometimes feel like the last 22 years or so I've been living on borrowed time. I guess that's why whenever I have any kind of health scare I kind of freak out a bit. It's sort of a post-traumatic stress disorder that many of us long-term survivors seem to have. Last year I got through a slew of health problems and thought maybe this year would be better. Now I found out I need surgery to remove a kidney stone and even though I’ve been through so much worse, it still scares me. I guess it's because of all the HIV medications I've been on for the last 30 years. I always wondered what affect...
Living for so many years with HIV I often reflect on things in the past and how I dealt with the many challenges that have come my way. Today I'm thinking about how grateful I am to have been able to go back to work part time. I remember in 1992, at only 35 years old being forced to stop working at my job at USPS as a letter carrier because the complications of AIDS made it impossible for me to do it any more. It was strange at first, now working after so many years, and I felt death was looming. Fortunately I had my son who was only twelve years old then and I spent most of my free time...
I'm in total support of the U=U message and the science behind it (Undetectable equals Untransmittable).
Today marks the 29th annual World AIDS Day and I'm so grateful to still be here to participate! Myself and and countless others have survived an infection that is trying to take us out 24/7 and I thank God for the much improved meds we have today.