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.

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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!

The second surgery in a week…

…actually happened.

It was at the other hospital (Herlev, as opposed to Riget), so there was no food or fluid restriction. This surgery was for removing the acute catheter and replacing it with the permanent (still temporary, though) catheter. This one basically goes right to the heart the same as the acute, but not directly into the jugular at the neck. The access is behind the collar-bone and it is far less fragile, and less vulnerable to infection.

The surgery went well, and the doc did a great job at minimizing the amount of scarring and using minimal stitching. Henning complained a bit… the scars make him look like he was attacked by a vampire. Kind of cool… but few will ever see it, due to the doc’s great stitch-work…

So now this catheter is working great. He can even fully shower with it, which is fabulous. I am still leery of it. I can’t quite figure my reaction. I have changed many a bandage in my day, and after working as long as I did in both the nursing home and the hospital, you’d think nothing would throw me. In fact, I can witness anything… but I just can’t get a grip on my reaction to changing the plaster on this catheter. I don’t know if it is because it does go right to his heart, or because it is so vital to his health, or what. But in any case, Henning can do it himself, so it is not a huge deal that I can’t do it without getting cranky or some other inappropriate reaction… but it bothers me that it bothers me… which doesn’t really help at all.

Anyway, the day after the catheter surgery, we picked up my daughters from the airport and had a whirlwind two weeks seeing every sight Denmark has to offer in the winter, that we could get to and from in any given 7-hour day. The girls were astonished that it was only daylight for such a short time… lol

It was a fabulous visit, and too short. But we look forward to them coming this summer. Hopefully by then, we will have this round of endless surgery behind us, and if not dialyzing at home, be very close to that goal. The days will be longer too, and we won’t have to worry about blizzards at the zoo…

2012-12-23 15.47.17

Time to catch up…

… from the Holiday break. I’m still in holiday mode, but the calendar tells me it’s time to get back into the routines of “normal” life. And for us, that means… surgery tomorrow! Not that that is going to be the normal forever, but right now, it seems like it is.

So to catch up from where I left it hanging a few weeks ago… Henning was having surgery twice in one week, and then my teenage daughters were coming for a couple of weeks for the holidays.

Surgery #1 was for his fistula. We arrived a few minutes early and didn’t have a place to hang out, since the room wasn’t ready. While they got the room ready, the nurse gave us coffee. That seems to be the standard here, like you offer guests coffee when they arrive. Not in my house, I forget to even offer water or tell people where the bathroom is… but in YOUR house, I’m sure you are a very gracious host. But I digress…

We didn’t even think about it. It was 6:25am. He drank half of a cup of black coffee… and then… OH NO!!! Turns out, he was not supposed to have any fluids after 6:00am. GAH. The nurse apologized but the damage was done. In my world, when I worked in the hospital, that kind of “ooops” is grounds for some serious reprimands… I doubt it is the case here, but I kind of hope so…

His surgery was to be delayed by one hour. Not that big of a deal, I mean, since when does anything happen on time? In fact, since he wasn’t having general anesthesia, it’s not a big deal. IN FACT, in the OTHER hospital we frequent, there is no food or fluid restriction at all… so it is really just up to the individual anesthesiologist.

About 8:00am, they wheeled him down the hall. And promptly brought him back. They had gotten as far as the nurse’s station. Apparently, the anesthesiologist freaked out over the half-cup of black coffee, and wanted to wait another hour.

About 9:30am, they took him out AGAIN… and by 10:15 he was back in the room, bleeding from the needle stick, but that’s it. Apparently, there was an emergency and the anesthesiologist was called away AS HE WAS ADMINISTERING THE BLOCK TO HENNING’S SHOULDER. Yup, the needle was in, the team was ready, and the dude just left. I hope he went to go save a life, because otherwise… well… I don’t think Denmark can (apparently) afford to lose so precious of a resource, but I really hope he gets hit by a bus some day soon…

So we waited. And waited. And waited….

This is Henning, bored.
2012-12-12 13.51.47

Except for the half-cup of black coffee, Henning had had nothing to eat or drink since the night before. The nurse had no info for us, nothing. Finally, the nurse came in and said the vascular surgeon (Johnny… I can’t get over the first name usage here) was scheduled to go home at 3:00pm (Must be nice, work 8-3 AS A DOCTOR. That’s better than banker’s hours… ) so they would know by 2:45pm if Henning was having surgery or not. Nice.

As you may imagine, the answer was not. But since this is an important surgery for Henning, they rescheduled us pretty quick. Sometime in January… they’d let us know. Double nice.

 

Schedules and other oddities

We are not organized people. It’s not that we lack the capacity to maintain a schedule. We both have the knowledge. Henning has his teaching/conference schedule and his private practice, both of which need time management. I used to be a manager in many incarnations of my varied careers. I like to walk into chaos, and organize it. I’m really good at lists, plans, etc. HOWEVER… when it comes to private life, neither of us like the idea of having that time scheduled. It’s not that we lack the skill… just the will.

But that has all changed.

With dialysis three times a week at four hours a pop (MWF), doctor’s appointments, and of course, social engagements, on top of our regularly scheduled activities… we are getting into the swing of having a pretty rigid, detailed schedule… which is good, considering the weeks ahead. This coming week, for example, has two (yes, TWO) surgeries and… my kids are coming for the Christmas holiday. So… if any of you are wondering what we will be up to in the coming days, here’s a preview.

Today is a dialysis day, so that means 4 hours in the morning – which, really, goes until about 1pm… so saying morning is kind of silly. Dialysis is really the equivalent of adding a part-time job to the schedule. Today is also Henning’s last day with his long-term PT (she is moving to the mainland), so that got fit in right after dialysis. He also has an appt. this afternoon, so that means a full day of driving around, after the big D.

Henning is having surgery on his fistula Wednesday. This is minor surgery to tie off some veins near the site to force the fistula to mature faster. While this is a one-day, in-and-out visit, it takes up a lot of time because we have to do the admission paperwork 24 hours in advance. Plus, because the surgery is on Wednesday, that means rescheduling dialysis. Our regular unit at Herlev Hospital seems accommodating, but since the surgery is at Riget Hospital, he’ll dialyze there. In this case, he will dialyze on Tuesday afternoon, as they didn’t have a Wednesday spot available.. So that means two trips to the Kingdom (Riget Hospital) on Tuesday, and one on Wednesday.

He is then having surgery on Friday to insert a permanent catheter behind his collar-bone. The one in his neck is working great, but it is not a long-term solution. It is more vulnerable, and, honestly, a pain in the… well… you get it. Since we don’t know how long it will take for the fistula to mature, this is a better, longer-term option.

Again, this requires the paperwork to be done 24 hours in advance, but since this surgery is in our unit at Herlev, it is closer. Making daily trips is not such a big deal.  Also, again, the surgery is on a dialysis day, but since this is our unit, it is easier to re-schedule the dialysis… we hope.

And to top off a week of busy, busy, busy, my kids are coming this Saturday (yes, the day after surgery #2) to spend two weeks with us. We have a tentative schedule full of trips to the city, museums, Tivoli Gardens, Sweden to visit Henning’s dad… it’s NUTS!! (But in a good way) The girls are well prepared to suspend any and all activities depending on how Henning is feeling, or if something unexpected comes up. But regardless we will be pretty busy. We also have a trip to Immigration planned. It is that time… fingers crossed.

I think we may come up for air sometime in January…

 

It continued…

… with admission to the hospital.

AND everyone spoke to us in English. The doctor who admitted Henning gave us all the information we asked for, and then asked (often) if we had any more questions, and left us with the assurance that she was available if we thought of something to ask later.  She was being shadowed by a medical student, so for his sake as well as ours, she was very detailed and specific.

All the questions about the acute catheter vs. permanent catheter were answered. His fistula (as you likely remember) is still too young/weak to bear the pressure of dialysis. He has a consult next week, bu there is no way to know how long it will be before they can operate, or how long after that until the fistula is viable. Because the acute catheter is not a good option for long-term use, but also because we could not wait the three-plus weeks for the permanent catheter (different team, different surgery schedule), we all agreed for him to have the acute catheter placed as soon as possible (some time that night), and still be placed on the schedule for the permanent catheter. More surgery, but also immediate access for dialysis, which would take place the next day, hopefully first thing in the morning, but for sure within 24 hours.

I drove home (yes, I drove!) to supply us for at least one, maybe two days in the hospital. If I stayed with him, Henning was allowed to stay in the Patient Hotel (sub-acute and way less “institutional” than a traditional room). Of course I was staying. Duh.

Anyone who has been reading my facebook posts the last week knows this, but when I came home, it was to an immaculate space. Bente had scrubbed the entire apartment in anticipation of our wedding celebration (because the next day, we were getting married… nothing like excellent timing), and the place was literally shining. I really did cry, then.

By the time I’d returned to the hospital, Henning was checked into the Patient Hotel, and our room was ready. It was lovely. We had two beds that we were able to push together. They made sure we ate, that we knew who was on staff for the evening, that we had extra blankets and pillows… they were wonderful.  After the experiences we’d had for the past few weeks, it was like finding an oasis.

We had an amazing dinner, and were able to finally relax, somewhat. We watched movies and read until they called Henning for surgery. I had only intended to follow him to the ward, but due to a combination of miscommunication between the porter and the surgical nurse, and (I am SURE – the language barrier), I was suited up in cap and gown and stood in a corner to observe the entire thing.

I was sure the phone would ring in the middle of the procedure, as I had not even thought of turning it off until the doc was well under way, and when I shifted position to check it, everyone stopped to make sure I was ok, so I just left it alone… Yikes!!!

I won’t go into all the details here, but it was fascinating. I have watched my oldest daughter have surgery, so I was somewhat prepared to watch someone I love get cut into. Somewhat. I also had a small career on the telemetry floor of a hospital as a phlebotomist and nursing assistant, so I know I have no fear of blood, guts, or other bodily excretions, and was in no danger of passing out or otherwise disrupting the operation. But…  it was still disturbing, as much as it was fascinating.

The procedure took about 20 minutes, and that was including the doc being interrupted by a phone call, and a visitor. I have a skit written in my head depicting the whole thing that I’m sure would be worthy of Saturday Night Live… but I digress.

Henning was then taken to X-Ray to make sure the catheter was properly placed. There was a fun moment (that I missed because the room was too small for all of us and the bed) when the tech asked if Henning would please stand up for the X-Ray, and Henning delayed for a moment after saying, “No,” before giving his explanation. I wish I had been there for that moment… 😀 Oh, and the catheter WAS properly placed.

After an hour or so of observation, we were allowed to go back to the Patient Hotel and (finally, maybe?) sleep. Have I mentioned how much sleep we have had at this point? Right, none. Neither of us had slept through the night in weeks… and had not more than an hour at a time in days. We soon discovered that the two beds were not quite the same height, and the taller one had a slight wooden lip that my elbow honed in on right away, but otherwise, it was very nice. But we didn’t sleep. We dozed, there was some snoring… but neither of us was able to let go enough, to relax enough, to really sleep.

The next morning, I grabbed food from the fabulous buffet provided, and we settled in to wait for the call to come to dialysis. We had quite a few OTHER calls, because people wanted to know what was going on, but no call from the dialysis ward. Henning’s dad had come to town, so we called him to ask him to chill the wine… I have mentioned that now we are well into our WEDDING DAY, right? No? Well, the days were running together at that point… so…

Finally the call from the dialysis ward came. They were unable to get us in first thing, but if we came in at 3pm… Henning asked them to call back in 5 minutes while we had a discussion.

The wedding was scheduled for 1pm. We had people coming over, some from quite far, and some (like his dad) had already arrived. Could we do the wedding, AND the party, in TWO hours?? Or … the other option was to wait until the next day for dialysis. When they called back, we took the 3pm slot. Or maybe… we could push it to between 3pm and 4pm… ? 🙂 When they found out why we needed more time, they complied readily.

So then….