Happy New Year!!

Welcome 2014!!

Melissa here. As most of you know, Henning has spent the last three months in the states with me. As you also know, I was booted out of Denmark, so our situation has been complicated by not only health issues but logistical issues, as well.

I have been busy making a new life in NH, while Henning has been figuring out home hemodialysis in Denmark. We had planned on his being able to travel with the NxStage System One (the only portable home dialysis machine) but due to tons of red tape and a complete lack of urgency of his care team, time was ticking away, and away, and away.

Thanks to NxStage and HDU (courtesy of Rich Berkowitz) Henning was able to travel to the US for a conference in October. He was officially invited by HDU, and Rich gave us tons of advice and lots of pushing in the right direction. NxStage stepped up and got on board, as Henning is the first Scandinavian and only one of a handful of Europeans on home dialysis to travel to the US, and perhaps the only one to do so for  such an extended visit. This is a Very Big Deal, medically speaking.

Thanks to some sponsorship, good connections and a lot of great timing, Henning’s visit has been relatively drama-free. He did have some access issues at first. In Florida at the conference, it was getting pretty urgent as he was unable to dialyze for nearly three days. That’s a lot of days. NOT good. But due to some great support, material, emotional and physical, from NxStage staff, he was able to finally get a good cleaning and we had a great time, over all. I’ll post more about the conference now that I will have some free time to really work on my backlogged posting.

Once we were back in NH, access issues continued to be a problem. Thankfully we have great support here as well, again thanks to NxStage finding a local doctor willing to work with them and Henning. International prescription and care issues continue to be a problem with home hemo users and international travel. His doc did a scan and discovered Henning’s venus access site was about 1/4″ away from the actual fistula. Again, NOT GOOD. And… also… no great surprise. I’ve said it before and I’m sure I’ll say it again, Henning’s care in Denmark is sub-par, and that’s the most flattering comment I can make.

Once Henning established a new access, he’s had no further access issues. In fact, dialysis has been pretty boringly unremarkable, and that’s GOOD.

We have visited some great friends, had some great dinners out, done too much shopping, and spent too much money in the three months he’s been here. We took the girls to New York City the weekend before Christmas, and that was quite an adventure! The girls had never been, and it was great seeing the city fresh from their points of view. Neither Henning nor I had been to the City during the holidays, and we did have a few cranky moments in the crush of Times Square, but otherwise we had a blast. We walked over 120 blocks, and checked off almost everything on our “If you could only spend one day in NYC what would you do” list.

We had a quiet Thanksgiving and Christmas and spent lots of time with the girls. Our oldest lives next door to us, so spending time with her, her fiance and our grandson is always fun!! Megan and Larry are getting married on New Year’s Eve, so I’m thrilled that Henning will be able to be here for that.

We are sad to see his time here end. He goes back to Denmark on January 6th. So we have just a few more days together, this time around. We are already planning the next visit sometime in the spring.

Look for more posts as we catch up after a few months of just reveling in each other’s company.

We are launching a new site, as well. This page has served it’s purpose and while we have not yet decided what to do with it, we have decided, in light of all of our recent adventures and media attention (due to Henning’s astonishing journey and medical status) that this was a little too… little. Look for KidneyNerd.com, coming soon.

Happy New Year!!

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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!!!

Letter to my dialysis ward

I wrote the following letter to the head nurse of my ward the other day. I am thoroughly disappointed with the way thing are happening – or rather, not happening – there. I just couldn’t stand it any longer and I spent a good part of the night writing instead of sleeping, which I am now suffering the consequences of.

Here is the letter:

“I am writing this letter because my life is too short to play the role of ‘the good patient’ much longer. To that end I only see one solution and that is for me to leave the ward ASAP. This means far sooner than any of you have imagined. I simply cannot stand being met with the attitude that I am met with on a daily basis. Few places in the healthcare system does such attitudes prevail – dawdling and clingy at the very same time.

Seemingly there is no interest in getting the patients back onto their feet. It should be obvious to you that I am a fairly intelligent and independently thinking entity. And despite that I am continually met as if I was a four year old. This happens virtually every time I show up at the ward.

There is a paternalistic attitude where the staff knows best. Patients get no opportunity for bringing any input to the table – let alone learn anything valuable. There is an implicit understanding in all corners of the ward that patients are to be kept as ignorant as possible about their own situation. Quite naturally I can only guess that this understanding pervades every corner of the ward but it is my experience everywhere I have been so far. Why tell patients about their disease? Or use the knowledge that they have of it, for that matter?

At the same time you have a staff that ought to have stayed home virtually every day of the week. They are completely devoid of incentive. They couldn’t care less about their work or their patients. If any of the staff feel like the cap fits then it probably does. On the other hand, there might be many who feel like it doesn’t regard them and they are the ones who should take a second glance at themselves.

I find it particularly sad that one week at a Swedish ward in Jönköping can teach me more that I have learned here in months. I am sad to say it has everything to do with the second problem. Not only was I met with a friendly and kind regard there. First and foremost I was met with a number of people who loved their jobs. People who treasured what they did – every single day, as well as the next day… and the next!!

A significant part of the problem is communication. I have no idea if it is only communication between patient and staff that is running anything but smooth. But the way I see it, staff to staff communication has a lot to be desired. There is no continuity in the treatment. And nobody takes responsibility for the lack of such. It seems to me that everything happens haphazardly. As a patient I feel lycky when some random nurse tells me something useful about my treatment. At the same time I can’t help thinking what other things I ought to have known months ago. I have been met with this sort of perfunctory approach ever since I started as an outpatient many years ago. It is, however, not good enough when one is receiving lifesaving treatment.

I have reached a point in my treatment where I feel almost feel lucky to have survived so far. I have been taught that I can only trust myself and the knowledge that I am able to retrieve myself when I need a deeper understanding of my disease.

Therefore I feel the need to demand that things are progressing in a way so I can come home ASAP. I expect that visible progress is made every time I come in and not every 3rd or 4th week like I experience now. I will see it as a failure if I am not home in less than 4 weeks. I know that it on average takes about 6 weeks to teach a home dialysis patient abroad.

I have to admit that time has made me more and more disappointed in the way things are done in the ‘limited care’ unit. In the beginning I had a positive view of the nurses here. But as things have progressed my experience has been that things are not all that different from the way they happen at the rest of the ward. The result is that I have become gradually more nervous for coming in for my treatments. It was a vain hope of mine that you had somewhat more insight into what ‘patient empowerment’ is all about. I learned the hard way how management had the impression that they knew and used the concept. But it has been made blatantly obvious that it was nothing but a ‘cheer’ – something that is used to pat each other’s back and mutually affirm that you are doing oh-so-well. ‘Patient empowerment’ has become the healthcare version of ‘bullshit bingo’.

I am always willing to enter into a dialogue about these issues. But as things are standing I am ready to call it quits. On several occasions I have tried to reach out to staff members but the majority of them are surprisingly indifferent. I ascribe it to a pervading problem on the management level. I have observed how we as patients are being tossed around amongst doctors, nurses and other staff without the slightest hint of continuity. I have mention it to a few of the doctors as well as complained about it to management. And with a few outstanding exceptions they just couldn’t  care less. After all, what do patients know about their own situation? When was it ever decided that anyone should listen to them? In the end, most of us are here to make a living. Long live the sausage factory[1]

I have two distinct goals with this letter. First and foremost I just want to have dialysis at home as quickly as possible. There is no reason to hold my hand any longer. Believe it or not, I am a big boy now. The other reason is that I thought you needed a wake-up call. There are simply too many wrenches in the work. And if you have any aspirations to enter the 21st century then it might be time for you to find out what ‘limited care’ actually means – both according to the dictionary and the more pragmatic understanding of the term, not least of which includes the understanding of the term ‘patient empowerment’ with all that it includes.

Finally, please allow me to point out that I do have extensive knowledge in this field. Since my time at university I have worked with ’patient empowerment both in the somatic and the psychiatric field. Therefore I will also make it quite clear that I have yet to see staff members (with a few brilliant exceptions) who know what the concept is all about – let alone use it in their daily situation.

If for some reason you cannot live up to my very reasonable demands about dialyzing at home, please tell me how to go about it. I strongly insist that it will be done.

Kind regards, Henning Sondergaard”

This letter might be a polemic and harsh critizism and a little on the controversial side and I am sure I have attracted a few enemies with it. But my point is pretty simple. This is my life we’re talking about. It’s not my job. I know it’s their job (and quite honestly, most of them suck at it) and as I say, I think most of them should go find something else to do because they neither are enjoying it or good at it. This is what do or die but it is only what they do to make a living, and that is the crucial difference.

So how was it received? Well, I am sad to say: “As expected.”  The head nurse got back to me after a while and her reply was this: “We all know that’s how you feel. So let’s see what we can do to get you out of here.” I can’t even begin to describe the level of indifference. It would have been more honest of her to say ‘so what? We don’t give a shit, so go home and live your life’ or any other direct brush off instead of this passive aggressive ‘we know you’re hurt so let’s get rid of you and the problem that you pose for us by being interested in your own treatment’

To me it’s like poking somebody’s eyes out so they can’t see how you broke their leg and then telling them everything looks fine and the pain must come from something else.


[1] In Danish the term ”sausage factory” points to the fact that many service industries have turned into factory-like industries in the last few decades. I don’t know an English term for that sort of thing and at the same time I am pretty fond of the Danish one.

The journey continues

…sometimes slow, sometimes not so slow. But never at an acceptable level!

I might as well admit it, I am ‘the world’s worst patient’, primarily due to the fact that I am the epitome of impatience when it comes to hospitals, their standards and procedures. There is a systemic thinking that reminds me of a swim meet where some clown has filled the pool with molasses –every progressive step is taken in slo-mo, when it is taken at all.

So before I get started on my impatience tirade, let me relay a fun story from today. Part of the whole dialysis process is doing your vital statistics, weight and blood pressure (BP) every single time and BP is taken both before and after the cleaning of the blood. To some of you it might seem like yet another one of those unnecessary hospital things but it does make sense when you know why (and remember I am usually totally anti that sort of thing). BP is measured because when fluid is removed from the body too fast there is a serious chance of a drop in BP that might lead to the brain not getting enough oxygen – and I think we all know what that means. Weight maintenance is also of vital importance because one is way more prone to different diseases and aftereffects from lack of basic nutrients if the weight drops. So as much as I want to say they are unnecessary, unfortunately they aren’t.

So today I get on the scale and the little strip of paper that usually comes out with my weight is no longer there so I have to have a nurse read it for me. she tells me that they also have a chair scale that I can use but that one also needs a nurse to read it so there is no point in using that one either. I make the comment that it is a remnant of the old-fashioned thinking that the staff needs to be in control of everything and the nurse adds dryly that she disagrees, in her opinion it’s a clear sign of no thinking. I must admit that comment warmed my cold, little (im)patient heart – it’s the little things that count sometimes.

So why am I otherwise so impatient? The short answer is, because everything is so slooooow! I am doing great with the needles. I have started using a blunt needle in both my buttonholes and I have self-cannulated for quite a while. I still have the nurses spot me while I do it but it will not be long before that is unnecessary as well. So that is sort of ok.

What really makes my blood curdle (something that is never good when dialyzing) is the fact that I was supposed to start on the NxStage machine, I am supposed to use at home, 2 weeks ago. But then the rep got sick and then time went by with nothing happening until I asked about it myself. So then we got an arrangement for next week that now has been pushed to the week after because of the nurse’s schedules. That means that 4 (FOUR) weeks have gone by for no apparent reason. Four weeks where I could have been learning and moving on with my life.

Let me say it honestly here. I  @*¤#  hate this inane system. It is a mystery to me why they are so paternalistic and over-protecting. I am seriously beginning to believe that home dialysis is seen more as a nuisance for the staff at this hospital and the freedom of the patients is not even considered – forget about it being secondary or even tertiary to the running of the ward!

I think I’ll stop here before my BP goes through the roof and the alarms will start howling.

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.