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!!

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.

No news…

…is good news, right??

As an excuse for not posting recently, it’s a good one, no?

I have stopped going to dialysis with Henning, so I have far less to report lately. He tells me all is well there. I stopped because while it is important for me to know about the machine and how to set it up, tear it down, etc. for when he comes home, I felt that my presence was hindering HIS learning process. He was becoming snappy and irritable with me. On top of that there were issues with his blood pressure and pulse, and his stress over our different learning styles was not helping… So one day, after he totally lost it on me after I recorded what he was sure was a false reading, I just walked out on him. There are nurses there to do what I was doing, after all. And they get paid. It works better this way, I think.

The only down side is… Henning isn’t a great historian, as we used to say during intake when I worked at the hospital, so… I didn’t have much to pass along.

But now I do:

Henning has regular blood work, and his numbers are fantastic. His levels of the more troublesome minerals are within normal limits, for the most part. Normal for healthy people. Which is practically miraculous.

He also just had a kt/V test, and the results are good. He is dialyzing efficiently, and getting good clearance. That news, combined with his usual blood work results, tells us that he is doing fantastic!

His dietician, Eva, is wonderful. I can’t say enough good things about her. She  has a passion for her work that surpasses probably everyone’s I have seen here in Denmark, so far. She also has a great sense of humor. She’s the one that told us months ago that Henning’s numbers were miraculous for not being on dialysis. The last time we saw her, she said, “I don’t often see numbers like this with dialysis patients. Actually, I never have.” LOL

She discussed healthy food choices, but we also talked about empowerment, how to get the patient to BE the hub of their own health care team. I really enjoy talking to her. If every medical professional had her passion and COMpassion for their patients it would transform medicine.

Henning is still dialyzing via catheter. The fistula seems to be doing well, but no one has dared stick it yet. Henning is getting it scanned soon, and if the nurses continue to be hesitant, the vascular surgeon (Johnny) has offered to draw pictures on Henning’s arm along with directions… *sigh* Johnny has actually done that before, he’s not even kidding. Unlike Eva, the man has very little sense of humor.

Medically, Henning is doing great. But he is still often tired and itchy and “spacey”. Since we know it is not directly related to dialysis or his diet, we are looking at other possible sources for his lack of feeling “well”. It may be exercise, it could be all the stress of the past many months catching up with him, it could be many things. But since it is not caused by anything medically acute, we can relax a bit and take some time just “being” while we investigate.

Our marriage took place amid a whirlwind of medical drama and stress, so we are taking a delayed Honeymoon soon. I am looking forward to this time away from our regular life: house, job, kids, illness, stress… and when we come back, I hope we will both be rested, refreshed and newly ready to tackle what life tosses our way.

 

 

 

 

Waiting to take a regular shower…

… is getting old.

When they removed the stitches on the catheter, they inserted a statlock stabilizer until the access finishes healing under his skin. It will probably take another couple of weeks. It’s small but kind of cumbersome, AND it is yet another thing that can’t get wet. *sigh*

PCL_Dialysis_hero

Henning has had the permanent catheter for a few weeks now. It worked great initially… but lately his arterial pressure has gotten high enough during the run to set off the alarms. To reduce the pressure, he has had to reduce the flow rate, and if you have been reading along, you know that is NOT a good thing. He has usually been able to increase it as time goes on during the run, but it is still worrisome. Twice however, they have had to reverse the access mid-run. No one has any idea why this is happening, and while switching does solve the problem, it causes a less efficient cleaning after the switch. And less efficient cleaning when he is already at the low end of “good” is not ideal. He has a dr. appt. soon, and this is one of the things that will be discussed.

His fistula continues to heal well after surgery. He has had no infections and no issues with the stitches, so we anticipate being able to start using it in a few weeks. When his fistula is finally viable (after nearly a YEAR of issues with it!) we will be VERY glad to get rid of the catheter.

The obvious lessening of risk is first, of course. Big things I look forward to:

* Not worrying about someone forgetting to close the port during set-up or break-down of the dialysis run, including Henning being that someone. I am getting good at playing complacent… but I still jump on the inside every time I see him or the nurse go near the port and I know it is still open. I know the risk of danger is small, and the staff is VERY good about reminding him, but if that damn thing is opened to the air, BAD SHIT WILL HAPPEN! (More on my role during dialysis in a future post)
* Not worrying about infection. So far, everything has been fabulous, but the risk remains.
* Not worrying about placement. The risk of the catheter shifting and puncturing his lung is very small. Not small enough.

Those are some of the big things… but the little things add up, too.

Little things I look forward to:

* Not having to worry about pulling it or bumping it in the night. That will be wonderful.
* No more bandage changes, at least, no more BIG bandage changes. THAT will be fabulous. Henning has sensitive skin and the constant changes are really stressing his skin’s surface.
* SHOWERING WITHOUT PLASTIC COVERING BANDAGES!!! I think this is the one small thing I most look forward to. Henning gets cranky, I get cranky… and it sets us both up for more crankiness next time around. The day he can finally soak from head to toe without worrying about anything getting wet that shouldn’t… I may just have to celebrate. 😀

Surgery number… I forget

Henning had his third fistula surgery last Wednesday. His flow rate was increased from 200ml/m to 800 ml/m (see Greg’s BigD reblog about flow rates) so this is GREAT news. The fistula is already more visible than it was, and in about three weeks or so we’ll begin to test it out.

We had no issues with admission, arrival, nor errant nurses offering food and drink to delay anything this time. In fact, it went as well as I think it could have. Henning was discharged within two hours of surgery, just after lunch, in fact.

The site is healing well, and aside from some initial pain, persistent itching, and some shower restrictions at first, it seems to be the least troublesome surgery he’s had on this fistula to date.

Here’s how it looked the other day:

2013-01-10 15.34.24

When the stitches come out, it will be interesting to see how little it is scarred, compared to the first fistula surgery debacle. You can see the first one by his wrist… HUGE scar, including stitch marks…. and after all that, it didn’t work. Blah. That is why we now insist on Johnny. Even if his hours are short and we have to wait to see him, he is a magician at vascular surgery.

More updates to come on the state of the permanent catheter, and how Henning is doing with dialysis. Stay tuned!