Hello dKos community. It has been a long time since I have posted a diary, though I do come around to the site a few times a week to see what's happening. So I do hope you will forgive me for being a lurker and then just dropping this diary.
In about 75 days, I will be kicking off from San Francisco on the AIDS/LifeCycle ride, a 545-mile ride from SF to Los Angeles over 7 days. 2,500 riders raise money for either the San Francisco AIDS Foundation or LA Gay and Lesbian Center. I have chosen the LA Gay and Lesbian Center as my recipient. I have set a fundraising goal of $10,000.
Now, before I ask you for your support, I want to tell you my story. Please read it below the fold.
Everyone has his or her own reasons for riding. Some ride for themselves, some ride for others. I want to tell my story. This is why I am riding. In order to do so, I want to tell you about a 100 day period nearly two years ago and the subsequent year and a half leading to this point that is equally an emotional and physical journey. This story is my story. It is very personal and I am extremely nervous about telling it. I hope that even if it helps just one person, then it will be worthwhile.
Everything begins July 18, 2009 in San Diego, CA. A friend and I were attending the San Diego Pride parade and festival, enjoying the festivities, and having a good weekend. I was due for my semi-annual HIV test so I decided to do so at the festival. I found an organization that was doing free testing. The organization was a research arm of the UC San Diego named Antiviral Research Center (UCSD AVRC) and they did two tests. The first being the standard OraQuick 20-minute test that scrapes cells from the inside of the cheek and measures the presence of HIV antibodies. The second test was called a Nucleic Acid Reaction Test (NART), which is a blood test that instead of looking for antibodies, it looks for the presence of viral material in the bloodstream. The OraQuick test will show a positive result in 3 to 6 weeks after initial infection whereas the NART can present a positive result in as little as 7-days after infection. OraQuick takes 20-minutes to get results and NART takes 10 to 14 days to get results. Fast forward 20 minutes and my test came back negative. Terrific! On with my weekend.
Given the negative test result I was certainly not worried about the other test, results that would not be available until July 30. Then July 28 came and I received a phone call that changed my life forever.
“Hi, may I speak to Eric Kenney?”
“This is he. How can I help you?”
“Eric, this is … from UCSD AVRC and I need to talk to you about your recent HIV test performed at San Diego pride. Do you have a moment?”
“Uhhh, sure. Hold on just a sec, let me step outside. … Ok.”
“There was a problem with your blood work and we need you to come and get re-tested as soon as possible. I hate to do this over the phone, but given your distance and the problem with the blood work, I need to tell you that we have reason to believe you are HIV-positive.”
“Uhhhhhhhhh, ummm, ok…..What do you mean ‘reason to believe’?”
“Well, your blood work hemolyzed in our lab. However, we were able to enough to do a test. Therefore we are about 80% sure of the test results being accurate. This is why we need you to come in to be re-tested as soon as possible. Would you be able to come by in the morning?”
“Ummmm, uhhh…. No, the earliest I would be able to come in would be a week from Friday on my next day off.”
“Ok, there is no way you can come in sooner?”
“No, I don’t think so.”
“Alright let’s set an appointment for 8:00 AM Friday August 8. If you decide you can come in earlier, please don’t hesitate to give me a call.”
“Ok, umm, thank you.”
“Do you have any immediate questions? Do you need a referral for someone to speak to up there in your area?”
“No, I am ok, I guess.”
“Alight, again please call me if you need anything in the meantime and if you can come down sooner than next Friday.”
“Ok I will. Thank you. Bye”
Needless to say, the rest of my day was ruined. I attempted to return to work, but that was about as effective as trying to perform a root canal on myself while standing on my head and asleep. Around 3:30 PM (about an hour and a half after the phone call), I called the person back to leave a message saying that I would be down on Thursday (July 30) morning. I received a callback Wednesday morning confirming my appointment for Thursday morning.
I drove down Wednesday night and stayed with a friend so I could be in-town in the morning rather than drive down early Thursday. I arrived at UCSD AVRC and met with my nurse to discuss what was happening and what to expect. A few minutes later a technician came for me to draw some blood … a lot of blood, then I returned to the exam room with the nurse. We had a nice discussion about what to expect in the coming weeks, months, years, and the rest of my life. I was asked to participate in a research study monitoring acute infection. It required me to come to San Diego every week for four weeks, then ever other week for eight weeks, then once a month for three months, then once every three months. My work schedule was such that I could accommodate this program. So I agreed.
The next few weeks became a huge emotional readjustment as I dealt with my new life. Trying to answer all the questions I had about how and why this happened to me. No answers came and no answers have come yet. Not sure they ever will. Not sure it matters at this point. The biggest question that kept nagging me what specifically how and when did this happen. I was able to piece together a timeframe of infection most likely between June 21 and July 7.
Back to the study at UCSD AVRC, every time I went down to San Diego they drew blood to monitor my viral load (the number of viral replications in a droplet of blood) and my CD4 Helper T-Cell counts (the cells that are the front line of your immune system). My viral load continued to rise and my t-cells continued to go down (both bad).
The “normal” progress of a person infected goes through three stages.
Initial infection: HIV starts attacking the body and the body responds by generating antibodies.
Seroconversion: The body creates enough antibodies to show a positive test result. Viral load spikes, t-cells drop, and many people experience flu-like symptoms. Some people do not experience any symptoms and others have to be hospitalized.
Rebound: Your body has generated enough antibodies to start fighting off the infection and your body starts to return to normal. The viral load usually drops and t-cells stabilize or slightly recover. You will start to feel better and essentially return to normal, however the virus is still present. Many people can stay in this stage for months or even years before requiring anti-retroviral therapy (medication). However, there is a small percentage who do not rebound and if they do not get started on ART quickly, will develop full blown AIDS in a short time, which if not addressed will lead to death much sooner.
As we monitored my blood work, my numbers were not improving and continued to decline in a drastic manner. It looked like I was heading down the road needing ART quickly, but my nurse wanted to see how thing looked over the next two months before deciding our next course of action. The hope was that my rebound period was just delayed.
By mid-August, I felt I needed to tell my family. I needed their emotional support and I needed them to know. However, I was so scared to tell them. This, I believed, was their worst fear and I had no idea what their impression of the current state of people living HIV was. Did they know that a person who has HIV and takes care of himself has a lifespan nearly identical to person not living with HIV? Did they think it was still 1987 where people were dying months after being diagnosed? I had no idea what to expect, though I knew I needed to tell them. I planned to tell them when they would be down for my 30th birthday at the end of the month.
My regular appointment fell on Friday Aug 21, the same weekend of my big birthday celebration. Without divulging any details, we planned a day in San Diego (either the Wild Animal Park or Sea World) and headed down Friday morning. I told them that I was part of a research study and if we could make a quick stop on our way, it would only take a few minutes to do what I needed to do. I left them in the outdoor seating area went inside to meet with my nurse. We reviewed my (worsening) numbers before heading out together to meet with my parents … or rather blindside them. I called my parents over to a table and we all sat down. My nurse started by introducing herself and saying that I had something to tell them. After taking a several deep breaths, I looked at them and said, “mom, dad, I am HIV positive.” My mom immediately started crying and my dad gasped. I turned over the discussion to my nurse to answer any questions from a medical perspective. They had several. After they had received enough information we left to finish out our day. The day ended up a much lower key day than we had planned. It was good, though, since it allowed them process the news and talk to me about it. Since then, I think that I have a much closer relationship with my parents now that they know. Since then, my parents have dealt with it the best they can.
Over the next few weeks, I continued to get blood work and my numbers kept getting worse. By this point, my viral numbers were well in excess of 200,000 and had been there for in excess of two months. Coinciding was a feeling of unbearable fatigue. Fatigue like I had never experienced before in my life. I would get home from work around 5:00 PM, eat dinner, and be in bed by 6:30. I would struggle to wake up at 5:30 AM, if I was not driving carpool that day, sleep on the way to work, then attempt to make it to lunch where I would go sleep in my car. Unbearable and untenable fatigue. By end of September/first part of October, it was time to start talking about options. The current situation was not sustainable. My life was suffering. My work was suffering. It was not good.
I met with a different nurse at AVRC to discuss my options about medication. We decided to genome test the virus and determine if I was eligible to join a nationwide, 2,500 person longitudinal medication comparison study. This study used three existing ART regimens and evaluated side effects of each, how each group responds long-term, and monitor the patients reactions. The researchers are also trying to understand dosing levels of the regimens. Currently, the FDA has approved the same dose for everyone regardless of age, gender, or weight. The study runs a total two years once the last person has joined. I was one of the early enrollees, therefore I have been on the study for almost a year and a half and it has technically not even begun yet.
The good news, as you probably guessed, is that I was eligible to join the study. A few pre-medication blood draws and exams were necessary which began in the first part of October. I was officially entered into the study and started medication on November 13, 2009, 118 days after my initial test and 109 after my initial positive test result. Now the even better news, the medications I am taking have been working. I have undetectable (viral loads are <45) and my CD4 t-cells are near 500, which means my immune system is normal.
I have decided to the AIDS/LifeCycle to prove to myself that I can do it even after being presented with a life challenge. I will push forward no matter the difficulties that may be ahead, no matter what happens, whether it is reaching new milestones like arriving at Rest Stop 4 on Day 5 of the ride in June or being elected to Congress. I chose to live!
It is so weird to think that about 200 days ago, I started this whole journey. Prior to that, I had not been on a bicycle in over a decade and even then had only rode a few miles at a time. Now, I am a week away from doing my second century ride (100 miles) and just under 75 days away from embarking on a 545-mile journey from San Francisco to Los Angeles over 7 days. Crazy! The old saying, "where there is a will, there is a way," seems so appropriate.
Now that we are just under 75 days out, I really need your generosity more than ever. In order to reach my fundraising goal of $10,000, I need $5,600 between today and June 5. It's a lot of money, I know. But, I am not asking for $5,600. I am asking for $75.
Can you donate $75 today? What about 3 monthly payments of $25? Or 5 monthly payments of $15?
These donations really do save lives.
I will do the hard part of riding my bike all those miles, but I need your support and generosity.
So can you donate $75 today? All donations are tax-deductible.
If you are so inclined to support my efforts or if my story has moved you in any way, you can view my personal ALC page at: http://www.tofighthiv.org/...