Where I am at

So i met a friend whom I rarely talk to yesterday and she asked me ’how’s it going?’ – a simple and straightforward question and a courtesy most of us afford each other. And there I was, not knowing what to say. What did she know about my dialysis? If she knew then how much did she know? And where should I start?

And no, I didn’t ask her if she had read this blog until I had stood there for a while not knowing what to say or where to start. It turned out she had and suddenly I felt relief. It was so much easier to communicate when I found out she had. I might not be fully up to date and my readers might not have read all the latest. But still, there was that frame of reference. People who read it know most of what is going on and I need not start over with Adam and Eve.

So this is for Monica and for all the others who do read. Both for those of you who read sporadically and for those who think my words are infallible gospel (you might be on the right track but you are still the minority – but then again who knows what happens in 2000 years, we might rule the world by then)

I am still rolling with the self-cannulation thing. Sometimes it’s good, sometimes bad. Friday I struggled with both needles, the first one I punched straight through the vein making it pump out a lot of blood, potentially leading to a hematoma (also known as a bruise) that can prevent me from using that same hole, both that same day and for a while until the blood from the internal bleeding is gone. We put on some ice to make the bleeding stop and tried sticking somewhere else with no success. Finally we went back to the original place and it worked, there was no noticeable hematoma.

The other needle also acted up. I could feel how it didn’t feel right when I put it in and sure enough it acted up during the entire dialysis and I had to sit there and pull at it as if I was trying to pull it out. Whenever I did that I could make the machine run the blood through at a reasonable speed, which means that I am getting that much more blood cleaned in the 4 hours I am there.

I was also supposed to have a meeting with a representative from NxStage, my home machine, Friday. But she called in sick. So now I am hoping for sometime next week and then that will most likely be the subject of my next post.

Self-cannulation

So I am very excited now. I have started to self-cannulate, woo-hoo… Self-cannulate, you ask? It simply means that I am sticking needles into my arm for my dialysis.

Yes, it was a bit of a hurdle to get over. But I think that I had a slight advantage over some people by having been used to needles my whole life. So even though this was my first time sticking a needle into myself, it wasn’t as bad as it could have been. But let me tell you, it wasn’t a walk in the park either.

I was supposed to start on a Monday and the preceding weekend was like a rollercoaster ride. I fluctuated between being excited, having butterflies in my stomach and downright scared and nervous. Would I even be able to do that to myself after all? But then Monday morning arrived and I was ready. I had applied a good dollop of lidocain on both points of entry as soon as I got up and it had worked wonders for the hour and a half that had gone till I sat in the chair with my needles and tubes.

Now, don’t kid yourself. Dialysis needles are not for the feeble at heart. When you sit there looking down at it before it goes into your arm, there is no doubt it has the diameter of a sturdy broom handle – albeit a broom handle with a sharp point at the end, a point that is on its way into your very own arm by your own action.

Then you realize that it really wasn’t that large Friday when the nurse handled it. Yes, it is still one of the largest size needles created to go into the human body. But really I have been on the receiving end for close to 5 months. And now I was the one doing it to me, I was totally in control. I could stick, I could pull out (and show what a sissy I was – I think not!) I could do whatever I wanted with that needle and there was no pressure from anyone as to when or how fast I should do it.

So, one, two, three… I did it. I stuck that sucker (literally) into my skin. And here I’d like to interject, human flesh is a pretty tough substance, and I mean tough as in a steak that hasn’t been cooked properly. But I got through the skin. and soon after there was blood in the tube, just like there was supposed to. I was in the vein. And I was stoked. I had first timed it! I was in I pushed the needle all the way in and had some help taping it down. No need for those nurses if they didn’t do something to help me out.

I had done it. I had self-cannulated.

And I was felling high, not that they had given me any drugs that would help there. But it didn’t last long. The next needle didn’t wanna to into the vein. No matter how I tried and poked and pulled back and poked again, no blood came out the way it was supposed to. I didn’t really understand. The site we used was the one that had been most successful so far. But now it was like it had dried up. So we gave up and used the old tried and true method of the catheter on my chest.

Same thing happened next time. First poke straight into the vein. Second one didn’t go well, but this time I got the nurse to find the vein and it worked, though not quite as good as it should.

So then I got annoyed. I made sure that I could be there with the nurse who knew my arm the best (or at least had had greatest success with poking me) and lo and behold. We are now about a week into it and not once have I missed. I am going full bore self-cannulating. And when I say full bore I mean full bore. I have stepped up the size of my needles by two sizes. So I am using what they consider a ‘regular’ size needle. There is one size bigger but the speed my dialysis is running at it really isn’t necessary for me to go higher at the moment.

Lots of other good things have happened. But I really don’t feel like writing anymore. Also I want people to come back another time. So I think I better stop here. I am getting ready to try out the machine that I am hoping to bring home, the NxStage. Is should be possible to travel with it so that is pretty exciting.

I have also started a new blog. Check it out here: http://disabilityrightsbastard.wordpress.com/

I hope to come back here soon so I can keep y’all updated on all the stuff that is going on in my life.

Sweden, travelling and needles

If you have read some of Melissa’s posts here you might have noticed a certain lack of enthusiasm with the way things are done at my regular ward. I will not go into the details of bad practice here. There are lots of things I think could be improved and Melissa and I don’t always agree on what they are but both of us have been pretty disappointed.

So the trip to Sweden was a real eye opener. We came back happy as clams, not because it was perfect there – it was just so much better. We were received as old friends returning home. This despite the fact that I had only met Britt-Mari, the head nurse very briefly at a conference about ‘patient empowerment’ and we had spoken to each other for no more than 2 minutes.

Last time I promised to talk a little more about the questionnaire that she gave us from Joakim, the design student who is working on improving the experience for home dialysis patients. Since then I have changed my mind about that.

I started writing this post with that in mind but it turned out to be way longer than I had anticipated. So I have decided to make a dedicated page where I will discuss the different issues more at length. They deserve to be more than just part of a regular blog post – especially since I am planning on working with them in the future. I have a strong desire to make this part of my work, there are lots of dialysis patients out there who deserve way better treatment than they are receiving at the moment.

So back to me.

I am doing relatively good at the moment. I have found a good rhythm. I go and do in-center dialysis for four hours three times a week. Yes, it is tedious and it requires a lot of patience. And yes, I do not like to be poked with two needles with a diameter that reminds me of a broom handle. And yes, it is really, really annoying to have to sit still with your left arm for four hours without a break – not moving it too much even when my hand is about to fall asleep. But… the advantages are that I have time to read and write, I can catch up on my emails, I can do some research, I can read the newspapers that I don’t get to read all the other days. There really is plenty for me to do while I sit there.

I have even spent a couple of days making preparing one of my presentations that I do for work. Usually when I do that sort of thing I spend way too much time doing all kinds of other things while doing it. But when I do it while dialyzing I am forced to sit there and concentrate – and guess what, it works! I got some pretty good presentations out of it.

I am now preparing to move my dialysis home with me. It does require a few things; first of all I need to be able to be 100 % self-sufficient, doing all the steps myself. I think I am pretty far along that path already, I can set up the machine and break it down again, I can find everything I need to start, run and finish my treatment. The only thing I haven’t mastered – or tried for that matter – it self-cannulating. Or for those of you, who are unaware of that sort of weird terminology, poking myself with the aforementioned ginormous needles. But as of next week I am joining the ranks of self-flagellants, those weird people who inflict pain on themselves. In my case it is a pure self preservation practice, though.

I honestly don’t know how I feel about it. I am hesitant, excited and scared at the same time. But no matter how I feel about it, it is necessary for me to do it if I ever want to enjoy a modicum of freedom again. And if there is one thing I am pining for it is the freedom to move about. I have never felt so disabled as I do now that I have become a dialysis patient, no wheelchair or any other mobility device tethers you to your surroundings like the little plastic tubes and needles of this life-saving device from hell, called a dialysis machine.

It is a long and interesting discussion about disability and dialysis, so I think I will stop here before I get carried away again.