Somehow I just knew that the news just would not be good. As I sat in that little room waiting for my doctor to come in, the sinking feeling in my stomach only got stronger. He showed me the x-ray. There is a stone taking up residence in my right kidney that is about a third of the size of the kidney itself. The best course of action is to surgically insert a tube in my kidney that will help the stone dissolve. I’m not sure I understand all of the science behind it, but I have been through the procedure and having to live with this tube on several occasions. Everything about it is downright miserable.
Most people know that I try to be a positive person in every situation I face. I don’t always succeed; I’ve been known to crash hard sometimes. But I try to look for the good in most things. Looking for the good has been difficult in this. First, inserting the tube in my kidney is not a fun process. Although I am sedated, I am awake. And because I have cerebral palsy my entire body goes into spasm for an extended period of time. I can feel the tube going in and it is instantly uncomfortable. Usually, it stays in for about six weeks or so. This time will probably have to be longer because of the size of the stone.
The tube is stitched in place and because I have full feeling in my body I feel every time it moves even just a little. That means every time I twist my body in my wheelchair or every time I transfer into my bed or into the shower, the tube moves, causing me pain. And when that tube is not where it is supposed to be, the pain is intense. The tube also drains into a leg bag that measures the same distance to the floor as my feet. I have been known to step on this tube often, putting a strain on the tube. The other side effect of the tube not being in place is that I leak pee all over everything I own. That is humiliating and demeaning. It’s safe to say that there isn’t much about this tube that I like. I also have lots of trauma around this particular procedure. The first time I had it done was at KU Med. The anesthesiologist who did it neglected to look at my chart before he started. Therefore, he didn’t know I had cerebral palsy. When I was spasming badly on the table, he was angry and he said “Stop wiggling! Do you want me to puncture a lung?” Apparently, he had a reputation for talking to his patients like that. His residents thought it was hilarious and were egging him on the whole time. I was sobbing when I was wheeled into the recovery room.
I have known my current urologist for more than 20 years. Yesterday, after we looked at the x-rays, he patiently listened to all of my concerns. Then he told me to drink as much water as I could for the next few days while he tried to think of an alternate solution. And if there is an alternate solution, I am confident he will think of it. Even if we have to do this surgery, he will be with me every step of the way.
When I got home the phone rang. It was my neurologist’s office. I have a pump in my abdomen that delivers a medicine called baclofen directly into my spinal cord fluid. The medicine is supposed to reduce my spasms. I heard yesterday that it is time for the pump to be replaced. When I had the pump originally put in, something went wrong and I leaked large amounts of spinal cord fluid for a long time. The only remedy was total bedrest, which I had to do for about two months before everything got back to normal.
Yesterday was hard.
But even with all I am facing, I realized some good things. I have a full team of caregivers these days. Three of my caregivers are guys, and they have been known to lift me pretty easily when I can’t successfully transfer myself. Members of my church would probably bring some meals by if I asked. They are pretty generous like that. I could even probably even find some people who would be willing to watch movies and play cards with me. Whatever happens, I am going to take it one day at a time. It’s going to be hard. There is no question.
I bet I can find the good if I look for it.