'You will, though,' the Queen said, 'if you don't make a memorandum of it.'
I am literally coming apart at the seams-- a part of my incision has pulled apart despite the staples. And the oxycodone and lack of sleep have conspired to give me a flood of evil dreams whenever I close my eyes. I put on Hendrix on the headphones and try to compose myself, get off this bad trip. To fix the incision they will probably open it up and expose it to air to let it "de-breed", let it ooze. It is time to do the same for my psyche. It is time to tell the story of Cytomegalovirus (CMV).
CMV is another opportunistic infection, this one viral. I am taking Aciclovir (acycloguanosine) as a prophylaxis against CMV. Back in '83 there was nothing. Since my first transplant, every now and then someone would come in and have me swish and spit back into a little cup. This I was told was to check for CMV. No one told me anything about it except that it was another opportunistic infection they were just checking for. But the word opportunistic didn't really sink in. Now I know it is the crocodile lying in wait along the swampy path for just the moment to strike at its prey.
I lost graft number one to rejection. They only had two knobs to tweak back then-- cyclosporine A which is nephrotoxic and they gave me as much as they possibly could; and very large doses of solumedrol. The solumedrol also wastes muscle, so I got progressively weaker. Eventually Dr. Tisiskakis told me that it was me that had to survive, not my liver. After the shock and anger wore off, I resigned myself to liver number two. Yes, Dr. Tisiskakis assured me, I could still end up fine. He could still put me (as I had requested) on the beach. For me, it would just take longer.
Everything was harder after liver number two. Slower to get out of bed, slower to start walking again. And then one day one of those little cups came back positive. I started to develop a fever. I noticed fewer and fewer doctors and staff and well-wishers were coming around. I had been very popular after my first transplant and having done so well initially. I had tried so hard to keep a positive mental attitude. I could sense that people were distancing themselves from me.
Fever rolled up to 105. For several days they had me on a cold blanket to prevent brain damage. I did not sleep or eat. Things were getting really bad. They had nothing to offer me except to back off on the immunosuppressants and let my body try to fight it off. On the third night I developed a terrible cough. I tried to rally. I pulled myself out of my bed and sat up coughing and listening to Jimi, trying to relax, trying to be that jelly fish floating.
The next morning they took me down for a gallium scan of my liver. After the scan, they parked my stretcher in the hall. You never knew if you would wait there fifteen minutes or an hour and a half. I was lying on my left side as I started to feel a deep calm descend on me. I cannot tell you exactly how I knew, but I knew this was the moment. A white coat walked by and I reached out and grabbed at the sleeve of the white coat. I tried to talk. A face leaned over and I whispered very calmly, ``If anybody cares to know, I am going." Then I drifted off to a semi-conscious state. (I know now that I at that point I had complete and catastrophic liver failure.) A voice yelled out ``get the crash cart!" I felt as if I was hovering over my body, floating above and watching. They intubated me and put in IVs and took me to the ICU. I felt myself drifting down into total darkness.
Sometime during the night I saw Meg's ever-hopeful face. She said, ``They're going to Jacksonville to get you liver number three". Before dropping off again, I gave her two thumbs up.
CMV is another opportunistic infection, this one viral. I am taking Aciclovir (acycloguanosine) as a prophylaxis against CMV. Back in '83 there was nothing. Since my first transplant, every now and then someone would come in and have me swish and spit back into a little cup. This I was told was to check for CMV. No one told me anything about it except that it was another opportunistic infection they were just checking for. But the word opportunistic didn't really sink in. Now I know it is the crocodile lying in wait along the swampy path for just the moment to strike at its prey.
I lost graft number one to rejection. They only had two knobs to tweak back then-- cyclosporine A which is nephrotoxic and they gave me as much as they possibly could; and very large doses of solumedrol. The solumedrol also wastes muscle, so I got progressively weaker. Eventually Dr. Tisiskakis told me that it was me that had to survive, not my liver. After the shock and anger wore off, I resigned myself to liver number two. Yes, Dr. Tisiskakis assured me, I could still end up fine. He could still put me (as I had requested) on the beach. For me, it would just take longer.
Everything was harder after liver number two. Slower to get out of bed, slower to start walking again. And then one day one of those little cups came back positive. I started to develop a fever. I noticed fewer and fewer doctors and staff and well-wishers were coming around. I had been very popular after my first transplant and having done so well initially. I had tried so hard to keep a positive mental attitude. I could sense that people were distancing themselves from me.
Fever rolled up to 105. For several days they had me on a cold blanket to prevent brain damage. I did not sleep or eat. Things were getting really bad. They had nothing to offer me except to back off on the immunosuppressants and let my body try to fight it off. On the third night I developed a terrible cough. I tried to rally. I pulled myself out of my bed and sat up coughing and listening to Jimi, trying to relax, trying to be that jelly fish floating.
The next morning they took me down for a gallium scan of my liver. After the scan, they parked my stretcher in the hall. You never knew if you would wait there fifteen minutes or an hour and a half. I was lying on my left side as I started to feel a deep calm descend on me. I cannot tell you exactly how I knew, but I knew this was the moment. A white coat walked by and I reached out and grabbed at the sleeve of the white coat. I tried to talk. A face leaned over and I whispered very calmly, ``If anybody cares to know, I am going." Then I drifted off to a semi-conscious state. (I know now that I at that point I had complete and catastrophic liver failure.) A voice yelled out ``get the crash cart!" I felt as if I was hovering over my body, floating above and watching. They intubated me and put in IVs and took me to the ICU. I felt myself drifting down into total darkness.
Sometime during the night I saw Meg's ever-hopeful face. She said, ``They're going to Jacksonville to get you liver number three". Before dropping off again, I gave her two thumbs up.
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