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Aging with HIV, Living Through the Nightmare
Dec 3, 2013

Nelson, I read some other articles on here that talks about aging and HIV. There is also another story just posted on the BBC at http://www.bbc.co.uk/news/health-25041911.

I can relate to these concerns. I was diagnosed at age 19 in 1988. From then, and through the years, I lived as though I needed to "live now" and in fear of what I felt was the inevitable. So I didn't make good financial decisions. I'm older, stably employed and I have a 401k, I paid into social security - but who knows if I'll ever be able to afford to retire.

In this country, if you are single with no dependents and if something happens, such as job loss or other devastation, there aren't really any resources for you. You can easily drop off the grid - and nobody really cares. I've seen this happen recently, in different ways, with at least 4 friends.

People like myself who are healthy, long-term survivors of HIV will need some type of ongoing care -- be that in prescription or social form. Though I'm growing more hopeful that we will see /at least/ a functional cure for HIV in the coming years, I privately live in fear that something could happen to me -- then what? That type of stress is real and it has a direct affect on one's outlook and well being.

I've been very fortunate, never to have been sick. Though I've had my scary experiences with AZT and other experimental drugs. I have been reading with more frequency about other "long term survivors" and it gives me pause. I think to myself: whoa, that includes me! I have survived this, and I never really give myself much credit because I haven't suffered.

I wonder how other long-term survivors are experiencing these same concerns, what plans they have (if any)... it's a very real issue.

I'd be interested in your perspective as well, as I know you too are a long term survivor.

Thank you!

Response from Mr. Vergel

Before I answer your questions, let me make sure I am clear about what my belief is after reading most studies on HIV and aging.

I truly believe that those who have undetectable viral load and CD4 cells over 400-500 cells/ml will fair OK even if exposed to older toxic drugs in the past. But those of us who are not that lucky to have high CD4 cells have to watch out for complications of long term immune dysfunction.

I have been HIV+ for 30 years now and always wondered when "my time will come". I have seen some people develop anal cancer and others have heart attacks. Since my CD4 cells have been under 400 cells/ml for most of my infection, I know I am at higher risk of complications. I have good health care and most know as being too proactive in my health. And most of all, I have not lost hope that we can have a fulfilling life even with limitations. I am also a believer in passion as a way to keep your immune system, so I strive to be motivated to do something I loveeven in bad days.

Like you, I have also learned to live in the moment. This has not been easy to do and I have to remain conscious of it. I have remained in that space through surgeries and other issues but have lost this path in several occasions to regain it back with the support of people who love me.

I am glad that many people with HIV who do not qualify for Ryan White may be able to get insurance soon. Some have been lucky to buy long term care policies. I know many long term survivors who are successfully leading good lives even with reduced incomes due to long term disability. It can be done, but it is not easy.

I think one of the most important things for us long term survivors is to build a strong support system if we do not have one. We should plan for a long life but have a contingency plan if something was to happen to us. Our support system should be aware of any potential needs we may have. Most people hate discussing these issues since as a society we have been conditioned not to deal with death or disability until it happens. Most of us have had friends who have died or became dependent on others.

I have instructed my mother, siblings and husband about my estate documents where I clearly state my wishes if I was not able to take care of myself and able to communicate. I have also had difficult but practical discussions with them about my concerns as time goes on.

I realize that some long term survivors may not have close friends or a family to rely on. If that is the case, I tell them to get busy trying to build one. It takes time to develop strong bonds with people that you can trust. At the end, all we need is one or two anyway.

Our relationship with our doctor and support staff also has to be a good one. If it is not, change doctors or become more aware of improving that relationship. Everyone has something that makes them feel appreciated and we should all find out what it is they need to be fully supportive of us in case of tough times.

I have just finished chemo for lymphoma and doing well. Everything I just mentioned I have done since this was another wake up call. My challenges are not over since my 30 year immune dysfunction is now starting to create issues. Luckily, most people who have survived HIV have had better luck with me and do not have to worry as much. I have only had undetectable viral load in the last 4 years of my 30 year infection. I was hoping to be lucky not to pay the price but lymphoma and a new diagnosis of CIDP, which is Chronic inflammatory demyelina. Luckily, like lymphoma, it can be treated. The most amazing thing is that I am still healthy and happy with my present moment. Every challenge is just a new experience to learn from, and I find myself becoming more knowledgeable of how to navigate research data and a medical system in which we should always have more than one opinion. Self advocacy and resilience have made us the long term survivors we are.

Remaining optimistic, learning how to cope with uncertainty and making the best out of it can be motivators to having a good life no matter what may be in the horizon. Many of us have had many more years than we expected and should be grateful of every day as it comes. And having contingency plans is not only healthy but rational.

In health,

Nelson



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