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. 😀

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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!

Great post on a topic we are discussing quite a lot: Nocturnal Dialysis. Thanks, Greg!!

Big D and Me

Kevin Collins emailed me the other day, to follow up on my post about the Nocturnal Dialysis service being offered by the Diaverum Dialysis Unit at North Melbourne.  In it I said that nocturnal dialysis started in Australia in Geelong in the late ‘90s.  But no! There was much work done and quite a story before that.  A story that is well worth sharing.

Kevin is a very interesting guy.  He was born in 1963 with Alport Syndrome, a genetic disorder which results in end-stage kidney disease and hearing and vision difficulties.  His kidneys started failing when he was 3.5 years old,

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Getting Ready for Home Dialysis

It’s a big deal. Dialysis is a really big deal. It takes a lot of time, up to 20 hours a week for in-center dialysis, if you count driving and prep time. It is a part-time job that affects the entire rest of your life. You can’t call out sick, you can’t get coverage for your shift, and if you are late, you still have to put in the entire time. There is no leaving early.

Right now, Henning is on a three-day a week schedule: Monday, Wednesday and Friday, 9-12:30. We show up at 8:30 to set up, and we are usually out of there by 1:00pm or so. We are learning how to set-up the home machine, how to run it, deal with the alarms and how to clean-up after. The learning can take months. But the pay-offs to home dialysis are enormous.

First of all, the cons. Doing it at home means we need more room. There is no way the machine and all the supplies would ever fit into this apartment, so Henning is on the list for a bigger one. That means a move, and that adds a level of uncertainty to our lives that is really not needed right now. While I love moving in general, I have still not fully settled in here, and with things up in the air with immigration, I just don’t look forward to doing another major move… but it is inevitable.

Dialyzing at home means it’s all on us. I kind of like the support of in-center dialysis. If the machine alarms, or if it doesn’t turn on, or if it won’t prime… there is not only another machine, there is a person to walk us through the event, and step in if needed. At home, support will be a phone call away, at least. Of course, by then we will be pros… but it is still daunting.

I think that’s it… for cons.

Pros is a much longer list:

*Time!! We can do it on our schedule, more frequently, and for longer. Studies show that the longer and gentler the dialysis, the better outcomes for kidney patients. Also, daily dialysis is so much better than three times a week. You don’t have to read too many articles before you start to freak out about three-day-a-week dialyzing… I don’t recommend that type of reading unless you really are wildly curious or just want to put a damper on your day.

*Travel!! Right now, we are limited to how far we can go between Friday afternoon and Sunday afternoon. Which… is further limited by how he feels, the second day out from his last cleaning. Needless to say, even an overnight trip is draining. We went to a party last month that was an overnight event. The party was fantastic!!! We are glad to have been able to go. But it was quite a drive there, and we had to drive home in a snowstorm. That part was not fun.

We had been pressed to stay longer, wait out the storm… but the deadline of dialysis the next day plus the knowledge that as the day wore on he’d feel less and less well… *shrug* We were glad to just be home. Which is not how we are, historically.

With a portable machine, Henning can travel again! We aren’t that far in the process, but he thinks there is no reason to doubt he would be approved for the smaller machine. The one con is you have to do it longer… but see above… that is not really a bad thing… Plus, you can dialyze at night with the small machine… so… that’s a huge plus both for home AND for travel.

*Space! Since we are forced to get more space… it means we will have more space. I listed the move itself as a con, but having a bigger apartment will be a HUGE pro. Right now, the other chair, the stairclimber, and miscellaneous equipment are stored in the room across the hall, outside the apartment. While not terribly inconvenient, technically he’s not supposed to use it. If our stuff were evicted from that space, we’d be hard pressed to store it inside, and keeping it in the basement storage is just not an option.

Another room and a half (which I believe is what he is approved for) gives us not only space for the dialysis machine and supplies, but also his OTHER equipment and supplies.

ETA: Stairclimber:
THIS:
scalamobil_02

NOT THIS:
stairclimber girl

*Independence. While I listed being on our own as a con from the viewpoint of support, the ability to determine when and how to dialyze is a HUGE pro. It puts control back in Henning’s grasp, and he will not be dependent on the center’s staff, schedule or location.

There is one nurse, who I call Nurse Scabby. She has these huge open sores all over her arms… and I pray every time we go that she is not the one to work with Henning. She also is lax on cleaning the ports EVERY time they are touched (I may have mentioned, these go right to the heart, right??) so she gets on my nerves two ways. I think she should not be allowed to work there… but I am also a raging bitch these days… *shrug*

Also, the center we have transferred to (limited care) is far better with schedule accommodations (surgery seems to always happen on a dialysis day) but it will still be nice to be able to do it at home the night before and after, and not worry about whether he will have TWO two-day gaps in dialysis that week. And it will be nice to not have to get out and drive to the center. I’m lazy. I don’t like getting up early. I do it, but it will be nice not to have to.

*Privacy. I am getting used to the lack of privacy afforded here in Denmark, as opposed to the US. Sort of. I still don’t understand doing intake in the waiting room, or getting information or directions out in the hallway… but I do understand that the system here is overwhelmed… and so I’m getting better at dealing with Henning being partially dressed in full view of God and everyone during exams, at having to answer questions in a room full of strangers, etc. But… the other day I finally lost it.

We are learning to use the regular home machine, which is in its own room for training purposes. The smaller, portable machine lives in that room, too. Which is the cause of my meltdown. Henning dialyzes MWF, 9-12:30… every week. It is a regular thing. It is on the schedule. One time, a PD patient (peritoneal dialysis) needed a space for… something… so they asked if they could use part of the room. No big deal. They put up a screen, the patient was in, and out, in a hurry.

However, last week… with no warning or asking… this woman comes in with a burly sort of guy, and starts moving all the equipment around. They wanted to take out the smaller machine. It IS portable… but it’s not like you can sling it over your shoulder. So they started climbing over hoses, moving tubes, pushing Henning’s chair all around. I may have mentioned this, and most people know it… but hey. Dialysis means all the blood is removed from your body, cleaned and pumped back. Over and over again. Which means… those damn tubes are important, ya know?? Don’t f*ck with the tubes… and that is exactly what they were doing. Gah!!!

I was too upset not to have hit the chick, so I sat there making snarky and perhaps inappropriate comments, and generally impeding their progress as much as I dared, once I was certain they weren’t going to disconnect Henning or tip the machine… After they left the room I complained about it to our staff. I said anyone not capable of knowing their schedule three hours in advance (remove the machine prior to Henning’s arrival) or unable to delay it by 30 minutes (Henning only had a half-hour to go) should not have the authority to manage anything. We got an apology. But it still makes me upset to think of it.

So, home dialysis provides far more pros than cons, and we are very much looking forward to it.

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.