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.
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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.

 

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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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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!!!