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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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.

 

 

 

 

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!

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…

 

This a great post!! Greg is always a wealth of information!!!

Big D and Me

Manny (not his real name) started BigD about two months ago.  And contrary to common experience, he feels just as lousy as when he started: weak, tired, generally unwell and incapable of doing much at all.  These are classic symptoms of insufficient dialysis, where not enough toxins are being removed by the membrane filter.

Why?  Like all new BigD members, his fistula was soft and fragile and initially couldn’t handle blood pump speeds higher than about 200 milliLitres per minute (mL/min).  But rather than his fistula gradually maturing over time to become capable of faster blood flows, it had some kind of blockage (maybe it was clotted or had a narrowing that impeded the blood flow).  So staff couldn’t get the blood pump speed past the 200 mL/min mark, which is not really enough dialysis to make a difference.

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And finally…

… we had a really fantastic day.

Friday morning, Henning went to dialysis while I prepared the turkey and side dishes. I managed my Embassy errand, and Henning’s dad was kind enough to play chauffeur. He didn’t even laugh when I started belting out, “Cecilia” along with the radio. What can I say. I was tired. Plus… who doesn’t love that song?!

By the time Henning returned home, dinner was nearly ready, and our first guests were arriving.

I can’t even describe the day. It was sublime. Everyone brought a dish to share, and all the food was spectacular. Our friends are amazing. Everyone was full of love and good wishes. We had jazz in the background, wine in the foreground, and we were all in great spirits. 🙂

The day ranks in the very top percentage of good days I have had. After the month we have had, to spend the very last day of it in such great company, surrounded with love and support, was truly a gift.

November is a month of Thanksgiving for my country. I have struggled sometimes with trying to find things to be thankful for, in the midst of all we have faced this month. I have been sarcastic, I have been angry, mostly I have been fearful… But, looking back over the month, it is clear to me how very blessed I am, to have the opportunity to live this life I chose with the man I love.

To everyone reading, thank you for all you have given us. I enter the holiday season with a lighter, yet vastly fuller heart, and I look forward to sharing more adventures with you soon.

So then… Wedding Bells!!

Ok, so there were no bells. Or rice, or even birdseed, for that matter. But the bathroom walls had been scrubbed!!!

When I pulled up in front of the apartment Wednesday, there was a van blocking the space I wanted. Being the meek, mild, complacent soul I am, I gestured for him (the driver- I have no idea of the van’s gender) to move. He did, and I pulled into the space. As we got out of the car, I noticed he was a flower deliveryman. Nice. Someone was getting flowers! I felt a little bad as I had basically forced him out of the space, so now he had farther to walk with two very large floral packages. A little bad. A very little…

… until he showed up at our door.

They were for us!!! LOL Oh well. He laughed, I laughed, we all laughed. It makes a fun story.  And the flowers are gorgeous!!!

We had about 30 minutes after all was said and done to get ready for our wedding ceremony. Neither of us had showered, neither of us had our clothing ready… it was madness. But we looked good. At least I think we looked good. I haven’t seen the pictures, yet…

Henrik arrived, and we discussed walking to City Hall, but in the end opted to drive. I think the fact that we seriously considered walking, even though it really is quite a short distance, speaks volumes for our state of mind. We met Bente and her husband (also Henrik) at City Hall, and by the time we had all finished greeting each other and went inside, they were ready for us.

I had forgotten something blue, though. I was a bit distressed. I had my grandmother’s pearls, new earrings, my daughter’s bracelet… but nothing blue. So Henning drew a heart on my arm, in blue pen. I was ready.

We were all joking around, it was far from a serious occasion. Henrik the first (Henning’s dear friend) took LOTS of pictures, and Henrik the second (Bente’s husband) sat at HIS friend’s council seat. The ceremony was lovely, and brief. It was about 10 minutes long, and that was because the officer read a 6 minute long poem. But it was, really, very sweet. And appropriate. I managed to say “Yes,” where appropriate, and just like that, we were married!

We all returned to the apartment for fish (provided by Henrik the first), caviar (provided by Henning’s dad) and Champaign. We read lovely cards filled with heartfelt sentiments, and opened our wonderful gifts. We ate and drank and hugged each other. The afternoon was full of love and good wishes. It was truly amazing. And short.

Henning’s dad drove us back to the hospital, where, slightly buzzed, and as tired as I can ever remember being in my life, we waited for our room to be ready. The staff were full of congratulations, in English! And then… dialysis.

After all the drama, I don’t know what I expected, but it went textbook smoothly. Everything worked, the machine worked, the access worked, no alarms sounded… it was entirely uneventful. Except, the nurse has an American husband, so her English was better than excellent, and we discussed American Thanksgiving (which, I may not yet have mentioned… we were having in two days. We were celebrating it belatedly because, a month earlier, Henning had been scheduled to teach ON Thanksgiving…it had since become a wedding celebration as well… so we were planning on a house full of guests… in two days), so THAT was a little unexpected, but the process was blessedly dull.

We returned home, and basically collapsed. Henning’s parents were staying through the weekend, so we had houseguests, but they took care of us. They got take-away, did dishes, cooked for us, bought pastries and rolls, it was very sweet and very appreciated. We needed the pampering, honestly.

It would have been perfect, but after a couple of hours of real sleep, the first real, deep sleep either of us had in… well, you know the story… the phone rang. At 11:30pm. It was kind of like when the fire alarm bell goes off… it was that loud and unexpected, and we were both quite shaken. I would like to say it was someone who had simply forgotten the time and wanted to wish us well on our wedding day, but alas… it was not. I may have mentioned the reason we started this blog? Well… some people refuse to accept that Henning is not available to the curious world 24/7.  After fielding some   comments about his forgetting to inform them of what was going on, with no congratulatory wishes forthcoming, I might add (it WAS our wedding night, after all…), we tried to go back to sleep. We tried, but to no avail. *sigh*

And finally…