Jeff's Journal

Feeling Good Days

Life has a new rhythm at the moment. For the most part, I’m feeling pretty good, especially when I compare these days to the way I felt at the beginning of May. I am trying not to forget just how sick I was. (I suppose technically, I am still sick, but I feel much better the day after dialysis.) When the new rhythm beats me up and grinds on me, that memory helps me find a gracious attitude. I know where I could wind up.

The rhythm is pretty scabrous. I’ve written before how during dialysis I do pretty well until the 2.5 hour mark and then the chills start for the final 1.5 hour. That continues, but I’ve found a thermos of hot tea to be helpful at the 2 hour mark. The only drawback is it adds fluid to my weight and the techs are ones to want to take it off and then the cramping begins. I’ve tried eating while doing dialysis. Not a good idea.

After dialysis, I feel drained and lifeless. I’m not sure how to adequately explain the feeling and I try to get beyond it or evade it with sleep as much as I can. I’m capable of getting in bed and sleeping for about 4 or so hours after dialysis until the tingling subside. But after that time, my head clears, my body is still a little slow, and I begin to feel good. By the next morning, I am feeling great. So much so, I have had the thought of getting up VERY early to enjoy the ENTIRE day after dialysis. And people know I am NOT a morning person. It is a shame to waste any minute of feeling good. However, I cannot see a staff enjoying the thought of a 4:00 am staff meeting. By the evening of the following day, “the taste” returns and reminds me. (I told you I have thick denial.)

The third “day after” I remember waking up early and not feeling “right.” I could not get why I did not feel right, but after a while I realized the unusual feeling was that I was feeling good. I was feeling better than I have felt in years. It is hard to believe that in a few weeks there has been a turn around, but it has come with a cost as the schedule takes some toll.

This disease is a slow killer. It slowly erodes your health little at a time. And as your health erodes, your body adopts and adjusts to the new bad situation and you think the new bad is normal. It is a classic feedback example for a system in decline.

The doctors told me today that my condition was end stage five years ago and that this had been coming on for some time, perhaps even a couple of decades, even at the time of diagnosis. It is sobering to think through how health can make a huge difference. I think about some decisions made during this time of decline that if I had had a clearer head, what the difference might be today. I think about some of the relationships I have today that were founded within the past several years and how these folks have never known the me that was not tossed in the throes of being sick.

The next round of donor evaluation is taking a while. Friends have called in this week to set up an appointment for an evaluation. We discovered today that donor #2 is not compatible, but with a clearer head, that news is easier to take. And I welcome tomorrow because it is going to be one of the feeling good days.

posted by Jeff Waldo @ 6:33 PM