December 30th, 2009 § 2 comments

For a year filled with so much, I am at a loss to explain why I’ve had so little to say here. Perhaps writing it all down means I’ll have to read it all in black and white and then I will actually have to confront the reality of it all, and at some level I think I am trying to avoid that as long as possible.

When I was a child, when all my old relatives got together on holidays, inevitably talk turned to their illnesses and medical problems. There was nothing more boring to a kid, but now that I’m getting older, I find that those things have taken on a new importance. Like old cars, we begin to require constant repairs as we age in order to keep ourselves running.

For some of us it’s worse than for others.

I’m generally pretty healthy, and except for the arthritis issues, I don’t even feel all that old. My husband, Chuck, on the other hand, got dealt a bad genetic hand, and has had a variety of physical breakdowns over the last several years as a result of having asthma, diabetes, and heart and kidney issues.

In early November Chuck had what we thought was an asthma attack, and couldn’t breathe. I called the paramedics, and he was taken to the ER and admitted to the hospital. The doctors weren’t completely sure what all of the issues were, but asthma was not really one of them this time. One issue was that he apparently had pneumonia, another was likely related to his heart disease and yet another was definitely due to his failing kidneys. No more putting it off dialysis, he had to go on the machine before the night was over.

It wasn’t a complete shock since we already knew he was going to have to go on dialysis any moment, but we’ve been hiding our heads in the sand with regard to all that dialysis will really mean and to the impact it will have on our lives. In fact, even though I am the queen of medical Google-ing, I was hiding my head in the sand so much that I hadn’t bothered to look it up. When I did, I felt knocked for a loop.

He was in the hospital for five days and now he’s now on dialysis and that is a big change complicating all aspects of our lives for the moment. Dialysis is permanent, requiring that he go for three days a week for four hours at a time, and have all his blood run through a machine which acts like a kidney, removing the impurities as best a machine can. He is doing it in the late afternoons in the hope that it won’t interfere too much with our business, but it really does take a huge chunk of time out of our life.

Adjusting to the loss of time is hard, but I’m finding out that coping with all the dietary restrictions kidney failure and dialysis brings is even more problematic.  Certain foods are forbidden, and there are a lot of rules about things like calcium, potassium and phosphates, and sodium intake. The first time we went to the grocery store post dialysis, we both nearly started to cry since we had to put back just about everything we chose because it did not fit within the proper dietary guidelines for dialysis patients. The only good thing is that he now gets to eat a lot more meat, and he is definitely a carnivore. It’s a small consolation; gotta hang on to what you can.

Dialysis has helped though. It seems that a lot of what we thought were heart related issues turned out to be kidney issues. Some mysterious symptoms have disappeared entirely and he feels better and seems a lot healthier. And a lot of what seemed like excess weight turned out to be water retention. Although he looks great, it’s a hell of a way to loose weight. Dialysis is very serious with a certain degree of life threatening risk attached no matter how strictly you follow the rules.

The permanent solution of course, is to get a new kidney as soon as possible, and he’s working on getting approval to be on the kidney transplant list at Northwestern, but there’s a lot involved in that process. Even if we already had a donor lined up, it wouldn’t be something that could happen soon because in order to actually go through a transplant, he has to be maximally healthy considering all of his existing health conditions — bottom line, it’s very complicated.

Meantime, I’m on the hunt for internet resources and I did find a recipe site here and I am looking for more. If anyone out there has info or links, or, hey, even a kidney to share, please let me know.

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