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…

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….

It all started…

…with a routine appointment last Tuesday.

After our experiences the previous week, we were expecting to meet with the doctor and discuss options going forward. What we got was… and I am not even kidding… “We don’t have a protocol for dealing with patients who know their rights.”

The doctor said Henning’s labs were the same (dismal) but since Henning didn’t want to comply, he should just go home, and come back in five weeks. He had no way (so he said) to put us in contact with any other doctor or administrator to discuss the various catheter options. He suggested we ask the nurse.

We then met with the nurse, who after getting on the phone and getting nowhere with making us an appointment, told us point blank that since Henning had left the week before (after being called by the wrong name repeatedly and scheduled for the acute catheter without any information being provided), he was noncompliant and therefore he was out of options until he crashed, medically. She left open the suggestion that he could hasten things along… which to us meant altering his diet for the worse… which could be disastrously dangerous.  We left the ward dazed, saying very little.

Rather than drive home, which frankly, we were not up for, we decided to go for coffee in the hospital cafeteria. We sat and drank coffee and ate pastry, and were very angry. I was scared out of my mind. I was thinking, this can’t be happening. They were honestly refusing to treat him. I could not believe it.

Eventually, we started talking to each other. We discussed going to the emergency department and demanding to be seen. I was wondering if I could find someone to check into this. I believe I actually said, “What do you suppose passes for investigative journalism in this godforsaken patch of earth.” And that was the kindest thing I had said about Denmark all morning. One of Henning’s colleagues from his Patient Empowerment team runs the Patient Hotel, so he thought perhaps if we talked to her, she might be able to at least give us some direction, some traction. But she wasn’t in that day.

Finally I said out loud that I was unwilling to take him home. The past week had been so bad, and he was so sick… something, anything, needed to happen. He asked if I was willing to go back to the ward and talk to them, just myself. I figured, it couldn’t hurt. No one was talking to me, perhaps it was time they started.

So back we went. I went in by myself and said that I wanted to talk to one of three people (his two docs or the nurse), that I didn’t care which one I got, but that I was not leaving until I did.

The nurse was willing to talk to me, and we sat down in her office. I started by saying that from now on, everything had to be in English, and that I was to be informed of everything that was happening. I told her that I was not taking Henning home, so she needed to find him a better option, “today” . I said because he was so sick, I was unwilling to take responsibility for his health at this acute stage. I said if she refused to help us, we were going to the emergency department and were going to tell them that Henning’s medical team was refusing to treat him. I started crying, and I am still not sure how much of that was calculated or if I was that close to losing control.

Her entire demeanor changed instantly. She not only spoke to me in English, she was very warm and open and willing to do whatever she could for us. She left to physically talk to his doctor (the one we had been refused access to, and who she could not get on the phone) and when she came back, she asked for Henning to come into the office as well. She handed us all of his paperwork, and told us he was having the procedure that day, and to go immediately to the ward downstairs to be admitted.

To be continued…

Finally!!!!

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First, thanks BEYOND measure to those friends and family who have stuck with us this crazy week (… and longer, but who’s counting?). Your support means everything, and without it we would not be doing as well as we are.

Second, HENNING STARTED DIALYSIS!!! It was a rough and traumatic ride, but he is doing better and we hope to see continued improvement.

Third, details on Henning’s medical stuff and how we are dealing with the system are forthcoming, for those of you following, but I didn’t want this to be the world’s longest blog post… LOL If you know someone who is NOT following, and feel like they should be, feel free to point them in this direction. We have had too many bad experiences with people feeling like they are out of the loop, and that is the reason we started this blog, after all.

Fourth (and final?), HUGE thanks to everyone who helped us celebrate our wedding last week, both in person, and virtually!!! In spite of everything, we still managed to get married, and we had a lovely celebration both on the day, and then later in the week. I said this in the beginning, but I can’t say it enough: knowing we have your love and support means the world to us!!!

A Good Day

Perhaps not fireworks worthy, but that is likely because I’m selfish. I want to actually BE there, to see the good stuff, bear witness, so to speak. But Henning tells me it was a good day, and I believe him.

Henning was chosen to be part of an application development team some months ago. He has been to several meetings, been interviewed, videoed, etc. It is pretty cool, actually. He’s a ‘model patient’. So of course he is an excellent candidate for this kind of thing.  It sounds like a really great, USEFUL app, too. I hope they get the funding they need to pursue it.

Today they held a large conference on (ironically?) Patient Empowerment. He had a great time. He met a lot of really cool people, and came home with a plethora of actually useful information.  One of the presenters says he is a great candidate for a home dialysis unit that is small and portable. Like, travel-portable. She said one of her guys has it, and he is always playing golf in Spain. So… Whoo Hoo! He was also able to talk to his dietician (who is part of the app team, as well) and now has some more information on how to manage some of his more worrisome levels. So, great news, all around.

And… it gets better. He decided, since he was already out and about, to swing by the ward and get his blood drawn.  After our disastrous day Monday, the hospital called late that night and confirmed what we had suspected. His levels suck, but they are not “freak out in the hallways” bad. There are some numbers that are more worrisome than others, though, and they can fluctuate pretty quickly either way. They want him to go in twice a week to get blood work, until they figure out what to do for him regarding dialysis and his fistula.

One thing that may be an option is to tie off some blood vessels near the fistula to “force” it to mature faster. We should hear on that in the next day or so. Also, he is waiting to hear what they want to do, regarding the catheter.

So we had decided that we would go in again on Thursday (tomorrow). But, since he was out anyway, and feeling pretty good, he decided to go in after the conference today. That frees up our day tomorrow, which is nice, but I did have mixed feelings about not being there. I hate the place, honestly. After what I have seen and heard, I would really rather never set foot in there again. But on the other hand, if Henning has to be there, then of course I will go.  But whatever.  He went.

He ran into this nurse (a man this time) who was VERY helpful. I say ran into, because Henning reported that again, there was no one at the desk. I would have been more surprised if there had been. The nurse, Steffan, read through Henning’s chart, and even though they didn’t do the blood work there (the person who called us the other night gave us bad info – SHOCKING), he would arrange to have it done tonight, and did so. The mood was very light and easy. I want to be really chauvinistic and say it was because they were both guys. I think there is something in that same gender gathering, which makes things more comfortable, sometimes. But that was not the case tonight.

There was another nurse there in on all of it, the one who did the scan on Friday. She is also very open and communicative, with a great personality. She was one of the nurses who had tried to arrange for us to talk to the doc on Monday, and had pressed the case for the catheter. She was actually pretty disappointed in the way things ended up turning out.

In any case, they gave Henning a TON of information, AND gave him direct numbers to call to get answers for the questions they couldn’t answer. So it was a great experience. It was like Friday, without the needles.

So, why am I still upset? It is because basic patient care shouldn’t depend on WHO Is on staff at any given moment. Receiving good care should not depend on shift, personality or mood. It shouldn’t depend on how “with it” the patient is, or how able they are to manage their own care and ask the right questions. Good care should be a basic right. Any patient should be able to expect good care, hygienic surroundings, and complete information regarding their treatment, and at the same time expect to be treated with dignity and respect. That should be the MINIMUM standard of care.