I’m free

So I made it home.

I am officially on home hemodialysis and what a relief from the in-center – even if it was limited care it was still waaay too much hospital with really, really sick people all over around us. How anybody can ever get the idea to move a limited care division up next to the ‘regular’ center dialysis unit is beyond my comprehension. It is like having a rehab unit with an old folks home. The argument is that both are hemodialysis. Yes, and both people in rehab and the old folks need to exercise.

I moved my ‘new best friend’, a.k.a. Mary – as in Bloody Mary – home on Tuesday. Mary is the name I’ve given to the monster (Monster Mary also sounds pretty cool, come to think of it)

I had trained on that particular machine (NxStage, for those who are interested) for the better part of a week at the hospital. It was rather confusing at times. Granted, I had the same nurse all week but there were people from the company who represent NxStage in there with us 4 days out of 5. They were teaching me, my nurse and also a few of the other nurses and that became pretty confusing. On the other hand, I am glad they were there. I don’t think I would have gotten nearly as much training with just the nurse there.

While I was training I had my aides clean up and move around virtually everything in the apartment. I needed some serious rearranging for the machine to fit in my living room. Not only does it take up massive amounts of space but the supplies come in some pretty big boxes and I go thru supplies like there’s no tomorrow. But like I said in the beginning, I made it!

I did my first ‘home run’ on Tuesday. But I was totally cheating. I had my nurse and Per Anders, the tech guy from the company, here with me. But I got to do everything myself and it all went well with only one or two alarms (they have to go off sometimes) and the space I had created for myself was perfect.

So today I had to do the entire run without any monitoring and once again everything went smooth.

There is no way of illustrating the relief it is to be home. In fact, not so much being home as being out of the hospital. I can seriously say that now I know what purgatory feels like. I can’t even begin to tell how incredibly horrible it is. I have never met such a dehumanizing system. There is no way you can feel like a normal human being in such an environment. Everything reminds you that you are there on the mercy of the system. And even if the nurses do their best to accommodate they still make you feel like a patient.

I had some good talks with the nurses and I also overheard some of their gripes in the last week I was there. There is a definite advantage to being alone in a room where they would gather and speak a little more freely (probably because they felt that whatever they said I had already said things that were way more critical) The are very frustrated over the way things are run. But I still don’t think they can fathom the level of frustration that I felt as a patient.

Now I will probably spend the next few weeks on finding out what I can do about it. I am thinking that some kind of research project would be the way to go. But I honestly don’t know if I have the energy for it. The pay for that sort of thing is ridiculous until I finish a PhD and I don’t feel like spending 3-4 years doing that unless I get paid reasonably well to do it.

Maybe I’ll just remain the grumpy old man that I have been so far. It is mostly satisfactory and I can do that whenever I want without the responsibility of being part of some kind of system. Why get involved anytime soon in some other system where I can’t maintain my independence?

Did I mention it already? I feel like a man who has just gotten released from a mighty long prison sentence.

I’m free!!!

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2 thoughts on “I’m free

  1. I know the feeling as I spent three years in-center doing dialysis three days per week for four hours. Actually towards the end I had to go an extra day because my failing cardiovacular system would not let me take off all of the fluid necessary. That was about 7 1/2 years ago when I started home dialysis with NxStage.

    The first thing to say about home hemodialysis is that it has kept me alive all of these years. I would have died years ago if I hadn’t changed. So I can say the outcomes are better and longevity longer. I’m an example of both. I continue working as the founder and President of Home Dialyzors United.

    I’ve been able to travel — twice to Sweden and many places in the U.S. I’ve been able to snokel in the Caribbean Sea. What’s next? I’ve always wanted to fly in a glider — not the hand glider kine, but the plane, But who knows, maybe a hand glider as well. I’d probably break my two artificial knees and require two surgeries, but you only live once. Should I try a free fall parachute drop? Now I’m really talkling crazy. But with all of this freedom, although still tedthered to a machine in order to live, you want to grab it all.

    • Rich, I don’t know how you survived three years in-center. I am thrilled to hear that you have been home for 7½ years after that. When it comes to travelling everyone of us should have far greater opportunity than is available now, so let’s work on that together.

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