Dialysis and partying

So it’s been just about two weeks since I made it home and things are still moving along smoothly. I have had no serious accidents in the time I’ve been home.

My schedule is 5 times a week at 3 hrs. But I have mostly been doing 4 hrs at slightly lower speeds since that should help clearing phosphate and some of the large molecules better when I am on the machine for longer at each session. And I feel great (most of the time) Now we will see later in the week. I went in for blood tests today and that should give me a good measure of how I am doing with my schedule.

And now for something completely different.

I went to a bachelor party last Saturday and I needed to schedule it just right. We were supposed to be on the island of Fyn 2 hrs away at 11 and I had to pick up 2 other friends on the way so it was an early morning for me. So I made sure to dialyze at a reasonable hour the evening before so I would get a good night’s sleep before I went on my adventure. I also had my personal assistant come by Saturday to set up the machine for Sunday when I came home. It all went according to plan. We had an amazing day camping, drinking, telling tales of the old days and just generally being boys, falling asleep with the sound of the ocean in my ears. It just doesn’t get much better.

All it really took was some good planning. Making sure I was well dialyzed over the week so I could use one of my free days being away for 48 hrs.

So now I can plan a longer vacation next time. Of course the goal is going to the States, seeing my amazing wife and her 3 phenomenal girls (still have to meet one of them) But I am thinking of a longer trip to Fyn. So now I am going to get some supplies shipped over there so I can just go whenever I want – just like the good old days of getting in the van, this time bringing Monster Mary.

Sure there have been some minor mishaps but they will have to wait for another day. I did have a minor blood bath involving the finest spray I have ever seen in my life – so minute that it took me a while to even discover it until my wheelchair and a table as well as the floor was covered in the finest little droplets. But that’s the sort of fun you can have when you are not quite awake to do something as important as clean your own blood.

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!!!