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:

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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….

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…