Jeff's Journal

Clinic Talk

It seemed to take forever today. Maybe it was the let down that I was not supposed to be there today. Maybe is was the condolences of the staff who had not heard about the cancellation who came by to cheer me up as they expressed how sad they were that I was not in extreme pain from a 12 inch incision. (I told you there is a bizarre sense of community in this place.) Anyway, the time on the machine seemed longer today.

They cramped me today. These machines are incredible. They monitor the osmosis and they also pull off fluid. You have a “dry” weight which is your target and when you come in to the clinic, you weigh yourself, record your weight, get your blood pressure cuff on and they set the machine for how much fluid to pull off. Today I was scheduled to pull 2 kilos which would be about 5 lbs. I did not think I had that much fluid to pull. Protesting did not work. After about three hours, my feet began to cramp and they had to push about 300 cc’s of saline. Cramping is part of the gig.

But it’s better. BD, before dialysis, my calves would cramp every night around 2:00 am. I remember I went skiing with D a couple of years ago and I had a cramping episode. He woke from a dead sleep and cringed as I worked for an hour to get the muscle to relax. In early May, that was happening every night and S would just watch with a helpless look. Since dialysis, I have not had one of those early morning episodes.

Today they put me in the chair next to the clinic matron. She’s been doing dialysis for seven years. She has the center seat in the clinic and so far, she has ALWAYS been in that chair. I guess it is like the queen of the mound. She is the care taker of my shift. She greets everyone, says goodbye as every one before her departs. Nothing gets by her. She cramped today, too.

She was asking if I was going to get a permanent access now that the transplant fell through. I told her there were other potential donors – matter of fact, there are five more friends who have offered to be tested and I can “feel the love” – and I plan to defer the permanent access decision until I know what will happen with the next round of potential donors.

At my age, it is likely I’ll have more than one transplant. Mind you, I plan to make it work as long as I can, but the odds are that if I get 70 years, I am at least a two transplant potential. If the living donor option does not pan out, I’m on the list for the next two years. I cannot do dialysis with the current catheter for two years. I’ll have to have a fistula.

A fistula is the joining of a vein and an artery. It creates a bulging access where the techs can cannulate with the needles for the blood to flow into the machine. (Yes, it looks pretty painful to have the needles stuck into the access. The techs tell me it’s not too bad, yeah right.) The fistula will need a couple of months to mature. The problem with the access is that it sometimes clots and you have to create another one. Pretty much, you put the left arm in, then the right arm in and after that it is the hokey pokey. When you run out of accesses, well, let’s not think about that.

I spoke with the nurses and techs about my disease, FSGS. No one seems to know much about it nor are there answers to my questions. I am beginning to get my mind around the disappointing thought that the medical community has given up on a cure. I was laughed at by my surgeon when I mentioned that idea. Treatment is all they desire to do. Talking with the other folks in the clinic, they have bought into that paradigm, too.

As I wrote earlier, the clinic is an open room and as we can, we try to talk with one another. Discussions in the past couple of weeks have been fairly surface. As usual, I have kept my profession under wraps since once it is evinced it tends to change the mood of the conversation. One of the techs outted me and the other tech said she thought I was in marketing. The matron thought I was a student, but now that she knows me as a pastor, the conversations are getting interesting, practical theodicy. Our discussion dwelled today on the thought that is in the back of every ESRD patient’s mind. Without these machines or a transplant, the last hooray comes pretty quick. No matter where you turn, you are reminded, there is no cure. When you sign medical papers, they tend to drill in the treatment options and then kick it up to you that if you do nothing, you die. In light of no cure, we were discussing that if we refuse treatment, are we committing suicide? Listening to some of the stories in the clinic, some folks are tired. And after ongoing years of treatment, the routine remains the same and the eventual exit is not on your own two feet. I think about some of my Tuesday afternoon conversations of a couple of months ago and how trivial those topics seem in light of today’s conversations. The clinic talk has become interesting and real. There is an authenticity with this tribe that is permitting theology in the real world.

posted by Jeff Waldo @ 7:34 PM