Inspiration porn revisited

Disability Rights Bastard

In the past week I have encountered two incidents of the most insidious kind of inspiration porn that I have seen for a long time.

The first one is your typical picture where somebody with a disability is in a situation that is so perfectly normal that to me it is mundane. But apparently it becomes something ‘special’ to a bunch of people because one of the people in it is disabled. The other incident is a family who is exploited by the sort of idiots who create this particular nasty kind of trash by having a family image stolen from their blog.
Yes, they put the photo out there on the internet but nobody asked them if they felt like being exploited before their photo was stolen and exploited in the worst possible kind of way.

So the first story is an image I found on facebook. You can…

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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!!

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!!!

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.