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!!

Meeting with the big guns

This weekend I did some work on some of the background information of this blog. I added some stuff to the Things we’d like to change page as well as some of its sub-pages, like Equipment and Unit

The reason for this was that there was a letter from the head nurse (or should I call her “die Über Nurse”?) inviting me to a meeting with her and the leading doctor who administers the entire nephrology ward – which has a considerable size due to the area in Copenhagen that my hospital covers. When I first held the letter in my hand my head reeled with  hesitation.  I was in no way sure that I even wanted to confront them with how bad things are for us patients. But after a while it dawned on me that I couldn’t chicken out now for a number of reasons. There were real people who needed me to tell their story for them. I had asked for dialogue and I needed to be part of that dialogue now that opportunity beckoned.

So I started looking at my list of things that were wrong. Since I was in charge of it, those things were by no means organized on a neat little list or even a single piece of paper. Some of it we had put up on the aforementioned page but there were also a lot of things that were not part of the page. So as things unveiled themselves to me, I put the things up on the page as well as making a list of things I wanted to talk to the big guns about.

I feel like have only just scratched the surface of what is wrong with the way dialysis is done, not just here but all over. It seems pretty universal that people are dialyzing under horrendous conditions. This is going on in what we (at least some of us) would otherwise call civilized countries. And it’s time for us patients to stand up and demand some serious changes. There are a lot more of us than anybody dares to dream and  only by a concerted effort can we make the necessary changes.

So I worked on a list of pointers that I want to bring to the meeting. I have so many ideas because there are so many things wrong. It is not like I am some kind of brilliant genius. Now my biggest concern is whether I should leave a few things out to make room for the most pressing problems or if I should bring everything with me and just barrage them with it to show how fundamentally flawed the present system is. I honestly haven’t got the answer right now.

I have bought myself some time though. I have asked to have an advocate with me since I  have no intentions of sitting there all alone with those two people who think – and by and large know – they have the power.

Comments are welcome. Should I read them the riot act and say it all at once, or should I be strategic and only present the most important issues?

Why can’t we all be happy little patients?

Like I said at the end of my last blog post, the letter to the ward was received with complete indifference by the head nurse. If you haven’t read my previous post, here it is: https://healthyhenning.wordpress.com/2013/05/08/letter-to-my-dialysis-ward/

What I hadn’t anticipated was the way I as a person would be received by the rest of staff after I wrote it. I guess it’s reasonable to expect a measure of animosity after having told virtually everybody off without mentioning any names. But what I hadn’t expected was the outright shunning that was shown towards me. Now I am simply treated as if I have developed the plague. Nobody looks me in the eye, nobody interacts with me and I have been moved away from the new patients so they don’t contract the plague of dissatisfaction with their treatment.

Most of the people I like and respect at the ward are actively avoiding my presence. They are all afraid I was talking about them when I mentioned how they didn’t have their heart in the work they did. Only one person has come up and confronted me about it, and she continues to do so. Kudos to her. She told me how she thought I was out of line. And she might be right, I was very harsh in my criticism and I could have moderated my words slightly.

What I find completely mind-blowing is this:

Like all other human beings nurses have a right to have a bad day. When that happens we patients have to endure. I don’t blame them for not feeling a bubble of joy all the time, I am certain there is a lot of stress in a ward like theirs. Problem is that we patients are the ones on the receiving end of it. We are the ones getting sub-standard treatment, medically, socially and humanly.

And the great disconnect is this… we patients are not allowed to have a bad day and completely lose the plot. When I finally break down and say my piece – albeit in a slightly confrontational way – I am being treated either as non-existent or as plague ridden (not that the difference between the two is that different). There is a complete lack of caring.

We have to act the role of good and well-behaved children. There is no consideration for the fact that we are adults. And not only adults but adults who have a life-threatening disorder that requires that we show up three times a week to get what is considered minimal treatment. The underlying discourse here is: “Sit down, shut up and be grateful that we are treating you at all.”

Ok. I’ll throw them a bone here. We are allowed to have a bad day in some measure. We can sit in the chair and sulk and feel sorry for ourselves without too much difficulty, we might even be met with a kind word and some compassion – after all, we are all critically ill. However when the shit hits the fan and I pipe up and let out all of my frustrations then I am stonewalled. Patients are not allowed to have an opinion about their treatment. They are to act like their moniker and be just that… patient (adjective).

What that sort of attitude makes me think is: We all have to die, so why not sit back and let it happen while we all play a little game of despondency?

I am terribly sorry. I just can’t  play that game.

So what do we do? I don’t have an answer. All I know is that when I do what I feel is right and point out some of the flaws in the present practices I am met with an amazing degree of indifference. At the same time I need extremely thick skin, thicker than most people have – and especially people who are critically ill and therefore in a very vulnerable situation.

What I do know is that things are not going to change until those in charge are changing. To me it is quite obviously a cultural thing when habits and attitudes are so systemic as it is seen here. So unless the leaders are willing (forget about able; where there’s a will, there’s a way) to actually act in a respectful manner towards their patients and actually do what the patients want – and not like they think the patients want (don’t get me started on that, there is a whole new series of posts on that particular subjects), nothing is going to change.

Progress only starts with those who are aware of their own flaws. And I am seriously afraid the people in power at this ward are in love with their own greatness.

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.

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.

It’s me, Henning

Yes, I am alive. And I am posting. Melissa has done a great job of keeping you informed about my health and our struggles (or at least a few of them)

Now I feel well enough that I can post regularly here so that is what I am planning to do. My first post is about our trip to Sweden and about how good human interactions make the world of a difference – also when it comes to health care.

We went to Sweden for a few days and I decided to go to Jönköping for dialysis even though it was 200 km (120 miles) from my dad’s place where we stayed in Sweden. There was really only one reason for going that far for dialysis and that was curiosity. I wanted to see how a well run dialysis unit could look. I had a feeling that this one was such a unit because of a chance encounter with a single person with whom I had shared only a few words ever, namely the head nurse at their limited care unit, Britt-Mari Banck.

I had met Britt-Mari at a conference about patient empowerment that I attended in November last year. Britt-Mari had an energy about her at the conference that told me that she not only loved her job, she truly cared for her patients and her job. She had a genuine interest in the wellbeing of the people she worked with and saw every day – something I have seen very little of from the professionals I have encountered in Denmark so far (with a few exceptions – and you know who you are). They might act the part of caring and good Samaritans but any real interest in making life better for their patients is far removed from what they perceive as being part of their job.

So we got up at 5:30 to drive the long way north on E4. It was a beautiful drive in the Swedish winter wonderland, past endless rows of trees powdered with newly fallen snow. The van was nice and warm compared to the freezing temperatures outside.

The ward was very nice. Melissa immediately noticed how clean everything was while I was busy saying hi to Britt-Mari and her staff. They were all very professional and knew the drill but at the same time they were kind, caring and curious about us. Friendliness and warmth was the game changer.

I was assigned to Bengt, the nurse who had started the ward with Britt-Mari. Both of them being well experienced dialysis nurses had decided to start something new and different and I have to say they had done a great job. The patients I talked to there were very happy to be at this particular unit. They all had great things to say about it and one compared it very favorable to both Danish and Swedish wards she had been to.

I can’t exactly say what it was that made it so special other than it was the people running it and their involvement in their job. But an incident that I encountered there might be a good example of it. The first day we were there Britt-Mari came up to me with a questionnaire from a design student that had contacted her about improving the dialysis experience for patients, both in center and at home.

He basically asked what problems/issues we had encountered in connection to dialysis and then he asked about possible solutions to those problems. After taking the questionnaire home to work with us we recognized five problem areas that all were of great importance to the dialysis experience.

The five areas are:

  • Equipment, the size and look of the machines and chairs
  • units, everything from bureaucracy to lack of cleanliness at the units
  • structural aspects, how everything is run by doctors and manufacturers
  • human interaction, between professional and patient
  • psychological aspects of dialysis, support, understanding and knowledge of dialysis.

Now, my experience was that all five aspects were handled way better at Jönköping than they have been handled at my Danish ward. It felt much less like being in a hospital than I had experienced before, which in turn made it feel much more like they were normalizing the experience instead of making it into a treatment regime where one is automatically made to feel like a patient.

This morning I read something that brought the experience home for me. I had been pondering for days what it was that made this experience so different from the ones I had encountered previously and suddenly this was brought to my attention:

It is easy to teach a caring person skills but it is much harder to teach a skilled person to care.

That is exactly what made the difference at that ward. It was full of caring people who also happened to be highly qualified. But they all knew that no amount of qualification would make up for a lack of care and involvement.

Next time I will talk a little more about the questionnaire and the specifics of our categories.