I thought I knew the time frame my HIV infection happened in,but now I’m not so sure. I have a whole new reality to live with.
I’ve heard that if you keep asking the question, sooner or later you will get an answer. You may get a lot of different answers and then the right one, the one that makes the most sense, will come along ……eventually.
When I was diagnosed HIV positive in April of 2003, I believed that the test had revealed that was I was positive soon after I was infected. I had just gone into remission from another pre-existing blood condition about four months before.
In late 2001 I noticed I was having bruises all down the right side of my body. I remember showing a co-worker how I could push on the skin on my arm and by the time we left work a few hours later, there would be a bruise on that spot. She looked at me all concerned and told me I should get things checked out. The next day I did call for an appointment to see my doctor.
Within hours of doing a blood test, they called me to come into the office. They told me I had hardly any platelets in my blood and that if I were to be cut, it would be hard to stop the bleeding because it wouldn’t be able to clot. The doctor compared it to an old blood test to see what my counts had been before and it said I had a count of 260,000, it was now down to 11,000.
They asked if I had a risk of being cut on the job and yes, I was doing factory work, there were several risks so I was told to take time off work until they could bring the counts to a safe level. My doctor sent me to see a blood specialist who diagnosed the condition as ITP (Idiopathic Thrombocytopenia). Idiopathic because they don’t really know what causes it except that in many cases, a virus is present in the body.
I remember them asking me several times if I had been ill and I really hadn’t. I joked that I had to fake being sick to get time off work. They began taking blood samples every other day for the first couple of weeks. I was prescribed a high dose of Prednisone and one other prescription that would protect my stomach lining from tearing to eliminate the possibility of bleeding internally. They told me to pay attention to my bowel movements, because if I was bleeding internally, it would look like coffee grounds, I was to call them immediately or go to the emergency room at the hospital.
Weeks became months, the medication would help but wasn’t clearing it up at the rate they were hoping for so I had to have a treatment called an IVIG. Basically it’s transfusing platelets into me at the hospital through an IV. Three times I had to spend upwards of 6 hours per day at the hospital as they put six bottles of them in each time.
Around January 2003 they had finally brought my counts back to a safe level, around 60,000. It wasn’t back to over 200,000 but it was deemed safe. I was in remission and released from the care of the specialist. Knowing this day was coming up I had returned to my regular scheduled sex life In December 2002. I would have to do one final blood test in April so while I was getting it done, I asked that they include an HIV test at the same time.
While all of this was happening, it was never an issue that I was a gay man, it just didn’t come up and HIV was never mentioned. I did wonder, if I was positive, did they see it or would they only be looking for it if I asked for the test, after all, they were checking for anything and everything.
I recently met a man who, when telling him my story, he told me that he was diagnosed with ITP as well but it was two years after his HIV positive diagnosis. So I ask myself now, was HIV the virus they were looking for, the virus that could have caused the ITP? I did learn that it is possible for a person to be HIV positive for up to ten years and not know it. But this is a real stretch to think one has anything to do with the other but learning it happened to another person, there is a connection. And if it was the virus and if the math works, I could have been positive for up to two years earlier than I believed.
Then something else dawned on me, if I was positive longer than I believed, then I have to include myself in that percentage of MSM (men who have sex with men) who didn’t know my status, I could have been spreading the virus during those two years. This doesn’t leave me with a good feeling. I did have semi-regular tests for HIV prior to the ITP but to be honest, I didn’t exactly stick to a schedule.
I’m not saying this is going to happen to a lot of people, just that we need to share with peers and listen to them to understand what we are living with. It’s important to report everything and anything so our doctors know what to watch for. Sometimes we miss or ignore the warning signs for many health conditions and only when we get sick we do something, and sometimes, when it’s too late. The blood specialist told me when I went into remission that it could come back later in life. So far, it hasn’t, knock on wood.
The earlier you know your status, the easier your life will be living it with HIV, because it is possible to live a very long life with HIV. There won’t always be visible symptoms or a noticeable warning sign