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!!

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.

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.

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.

Fistula success at last!!

Last week, Henning had his fistula scanned. Everything looks fine, so they decided to begin using it on Wednesday. The first stick, the nurse went straight through the fistula. He still has the catheter, so while he iced his arm and applied pressure, he was able to complete dialysis. He came home with a small bump and bruise that spread quite widely.

Friday, they tried again, and managed to use the fistula for venous access. He still used the catheter for the arterial access, and the fistula worked well the entire session. Success!!! If only partial. His pressure was great, and everyone was happy. But it also bruised pretty significantly. Hmm….

Today (Monday) they used the fistula for venous access only, but are concerned the fistula is not “quite ready” because of the bruising. *sigh* His vascular surgeon was sure it was “quite ready” weeks before… and offered to draw on Henning’s arm if necessary. Since Henning has a follow-up with him tomorrow, I’m wondering if Henning will come home with new ink…

In any case, slow progress is still progress. As long as the pressure is good, his cleanings are good, and he feels good (relatively speaking), I am happy. I wish it were all happening faster, but I feel that way about everything, usually.

Henning also has an appointment with the cardiologist tomorrow. While his blood pressure and pulse issues have responded to medication, they are fitting him with a halter to do a 24-hour check. The last time he had this appointment, he had to walk out before they saw him because they were so short-staffed and running hours behind schedule. He was going to miss dialysis if he stayed in the cardiology ward, so chose to abandon that appointment in favor of dialysis. His appointment with the surgeon tomorrow is two hours AFTER the cardiologist, so I hope they are doing better with scheduling. Afer all, a two-hour grace period should be MORE than enough.

*Fingers crossed*