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.

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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

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.