Saturday, April 30, 2011

In the continuing attempt to give a version of my medical history so that we don't have to "release" the volumes of information in some archive room of the Cleveland Clinic, and more importantly give perspective on why I'm on dialysis in 2011 and am awaiting another kidney transplant.

At last entry we were approaching the fall of 1983, I was twelve years old, and my first transplanted kidney, given to me by my mother, was in full blown rejection. Things had been stabilized to a point where I was able to start school in September. Even though my physical state of affairs, not to mention my mental/emotional state of affairs, was precarious. Starting Junior High in a new school, the largest junior high in the country at that time with over 1500 students in two grades was overwhelming. I was just around four feet tall, and had blown up to a Wizard of Oz like dwarfish appearance because of the massive doses of predisone I was on to keep the rejection at bay, which was uncomfortable for me and others who saw me as a bit of a carnival sideshow. I was doing well with grades however, but not feeling well as my transplanted kidney continued to go downhill.

After a couple of months things were getting pretty bad. I had extreme exhaustion, and could no longer make it through a full day of school. Dialysis was planned, due to the fact that a new donor kidney had not be located yet. It wasn't all bad news in that much of extended family, and a few non relatives tested to be donors, and from that process there was hope, as well as real progress in locating a new kidney. However, time was not a luxury, as the end stages of the rejection took hold and I found myself very sick. To complicate matters further, we were finding very difficult to create a viable access site for the dialysis I needed to survive. Things all came to head around Thanksgiving when I literally could not go five minutes without sleeping, was just plain sick all the time, and found myself in the Cleveland Clinic with one failed catheter (that had come out shortly after being inserted, leaving the little blood I had left in my body all over the hospital bed), and no way of dialyzing my little body with poor veins.

On a metal examining table in the middle of the night with some doctors and other staff trying to put a new catheter needle in my groin, as a last resort. It remains to this day one the seminal memories of my life, as a moment frozen in time, when the suffering really did, for a time, seem to be too much, and I truly wondered whether I was going to make it through it all. My father telling the doctors to please listen to me because I needed a moment to stop screaming. Nothing was assured, and hope was really not part of the equation. Even though my donor had been identified, for several reasons, the transplant was not assured, and still not right around the corner, and my little body was really taking a battering we were not sure it could handle.

We made it through that night and I did get dialysis through the groin, even though it was painful and awkward. But better news was starting to come. My aunt was identified as donor, and she gave me a much needed blood transfusion, and we were putting together a time-table for a transplant in another month or so. Oh, and they were able to put a more comfortable, and durable catheter into my chest to last until the transplant time. Yes, even though things were really bad, I had made it through the short term suffering, and was about to, even though we couldn't see it that December, embark on a whole new life.

Next 1984, Transplant, new challenges, and a beginning.

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