Not the End Yet
I remember it was early on a Saturday morning, just two days after I had my brain biopsy, when my infectious disease doctor came in with a smile on his face, very happy to have finally discovered what it was that was eating away at my brain. At this point I had been in the hospital undergoing all kinds of tests for almost three weeks. Yes progressively losing my ability to speak, to swallow liquid, to maintain my balance, my eyesight and to read. So with a smile on his face he told me that I had "PML a very rare brain virus that has no treatment and no cure." Of course it took me a few minutes to realize what he was saying to me. He didn't really wait around after his pronouncement and as I couldn't speak clearly at this point most of my doctor's didn't take the time to really communicate with me anymore anyway. So I just laid in bed trying to process exactly what this meant to me.
My wife at the time was not there so I was all alone to think. Eventually I called my wife as she was driving over and tried to tell her over the phone. It was so hard because I slurred so much in my speech. I made the decision to wait till she got to the hospital to tell her. In the meantime, my neurologist came in and tried to prescribe Prozac to me to help me deal with the finality of my prognosis. I refused because I wanted to experience all that I could if this was going to be the end of my life.
Once my wife arrived and I shared with her my diagnosis she just started to cry and just couldn't believe after all we had been through this was to be my end. My mom had unexpectedly arrived in town the night before and had contacted my wife while she was on the way to the hospital and so she arrived as Evey and I were calling the family to tell them what the doctor had told us. I can easily say this was the hardest most emotional day of my life to date.
As I was talking with my family, or trying to talk with my family on the phone all I could keep thinking was "God could not have put me through all he has put me through for it to end here like this!" I just could not believe this was to be my end. That this virus would just slowly eat more and more of my brain until I was unable to function and then die!
Shortly after the doctor's visit with the diagnosis the nurse came in and took me off all the IV's and for the first time since arriving in the hospital I could move around without that IV tower. Not that I could move well. Later that day as my case worker doctor came to apologize to me and my wife for the prognosis Evey asked him to discharge me as soon as possible seeing as they could do nothing for me. He agreed!
My wife and mom left to go get the kids from a friend’s house and I remember just lying there talking to God and saying "Is this IT? Is this really how I am going to die?" I remember at some point thinking no this isn't it. I just did not believe deep down inside me that this was the end for me. I kept thinking, as I had all day long, that God has a purpose for me and it is not done YET! I didn't know how but I just knew it wasn't over yet.
When my wife came back a couple of hours later she had computer print outs of what exactly PML is. Can you believe we could not get a hold of my infectious disease doctor for the rest of that day to explain anything to us? She got on the internet and looked up PML. It was one page, very short and very, very clear. It said:
If you have PML and you are not HIV positive, there is no treatment and no cure and you have 3-6 months to live.
If you have PML and you are HIV positive and take your HIV meds there is no treatment and no cure and you have 3-6 months to live.
If you have PML and you are HIV positive and do not take HIV meds you have a chance to survive. I believe it was a 50% chance to survive.
When my infectious disease doctor stopped by the next morning, shortly before I was discharged, we (me and my wife) showed him the print out and said "It says right here if someone gets PML and does not take their HIV meds they have a chance to survive." He still didn't want to give it to us. He said well MAYBE...
So here is the deal. I am alive today because I never really took my HIV meds and never for long periods of time. In fact, at this time it was years since I had taken any medication. So I lived because my HIV meds suppressed the HIV virus and allowed my immune system to fight off the PML (brain virus). Am I free of the virus? NO. But as long as my HIV meds can continue to fight off my HIV virus then I will stay where I am. However there is no guarantee that PML virus will stop progressing any more.
As I left the hospital that last day all my doctor's believed I was going home to die. I, my wife and my family believed I was going home to get better! And THANK YOU LORD you do still have a purpose for me...
**Picture of me above with my 2 kids was taken Christmas of 2008 as I was coming back from the PML. I was very gaunt as I had lost a lot of weight but thank God still alive!
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