I was afraid we had waited too long. . . 01/05/2011

UPDATE! Our guest blogger remains on the upswing in this new year with her new heart. She is still recovering, but is doing well. We will be sure to keep you updated on her current status as her blog is about 8 weeks behind actual time.

I had the occasion to look back through the beginnings of my blog; another cleaning project in the office. I also happened upon an Oregonian article featuring me in April 2006 - the start of the on-line donor registry. I was struck by two things immediately: the first is that this “IT” I transplant has been going on for a long time. Genetically since conception, eight and a half years since diagnosis, six months of knowing I would soon be placed on the transplant list; one and a half months of actually waiting. One would think I have figured everything out by now, but I am far from it. The second thing was reinforced by last month's tragedy. I sat in an ICU waiting area with my friends, actually a very beautiful open space gallery with a large picture window overlooking downtown and listened to the organ procurement staff member talk. Next to her was the hospital administrative representative – my former role. I felt uncomfortable, a little time warp and a little need for self disclosure. I politely excused myself once the basics were covered. The Oregonian article describes this very scene. “I’d soothe mothers and dads, sisters and spouses as they waited and wondered whether any hope remained….. sooner or later she (that would be me) expects she’ll find herself on the flip side of the coin she once knew; waiting as relatives decide whether to donate a family member’s organs, and wondering if a heart will be a match for her”. Wow, that was written June 2007 and that is exactly where I am right now. I have been thinking about my donor – his or her family and it does make me sad to think of the pain and grieving they will have to go through so that I may live. I do hope in the future the gift of donation will bring them a sense of peace. I had an appointment at OHSU today. I got nervous after reading my horoscope in the morning paper. “Finish all correspondence and return emails early,” it said. That sounded ominous considering only three weeks earlier I went to my appointment and ended up in ICU.  And today once again I am dealing with that old belly issue (remnants from that XXXXXXing colonoscopy prep) and all the other issues of the past few weeks - fluid up a bit, pulse in the 80’s and 90’s. Once I got to clinic it was worse. I have lost another 2 pounds. It's protein wasting, a classic sign of end stage heart failure. The outcome was to change my waiting status to 1B without having to be hospitalized. Sounded good to me. My physician asked if I thought we needed to act. I told him I got scared when my blood pressure was so low.  I said I was afraid maybe we had waited too long. He replied, “So did I.”