Happy New Year!!

Welcome 2014!!

Melissa here. As most of you know, Henning has spent the last three months in the states with me. As you also know, I was booted out of Denmark, so our situation has been complicated by not only health issues but logistical issues, as well.

I have been busy making a new life in NH, while Henning has been figuring out home hemodialysis in Denmark. We had planned on his being able to travel with the NxStage System One (the only portable home dialysis machine) but due to tons of red tape and a complete lack of urgency of his care team, time was ticking away, and away, and away.

Thanks to NxStage and HDU (courtesy of Rich Berkowitz) Henning was able to travel to the US for a conference in October. He was officially invited by HDU, and Rich gave us tons of advice and lots of pushing in the right direction. NxStage stepped up and got on board, as Henning is the first Scandinavian and only one of a handful of Europeans on home dialysis to travel to the US, and perhaps the only one to do so for  such an extended visit. This is a Very Big Deal, medically speaking.

Thanks to some sponsorship, good connections and a lot of great timing, Henning’s visit has been relatively drama-free. He did have some access issues at first. In Florida at the conference, it was getting pretty urgent as he was unable to dialyze for nearly three days. That’s a lot of days. NOT good. But due to some great support, material, emotional and physical, from NxStage staff, he was able to finally get a good cleaning and we had a great time, over all. I’ll post more about the conference now that I will have some free time to really work on my backlogged posting.

Once we were back in NH, access issues continued to be a problem. Thankfully we have great support here as well, again thanks to NxStage finding a local doctor willing to work with them and Henning. International prescription and care issues continue to be a problem with home hemo users and international travel. His doc did a scan and discovered Henning’s venus access site was about 1/4″ away from the actual fistula. Again, NOT GOOD. And… also… no great surprise. I’ve said it before and I’m sure I’ll say it again, Henning’s care in Denmark is sub-par, and that’s the most flattering comment I can make.

Once Henning established a new access, he’s had no further access issues. In fact, dialysis has been pretty boringly unremarkable, and that’s GOOD.

We have visited some great friends, had some great dinners out, done too much shopping, and spent too much money in the three months he’s been here. We took the girls to New York City the weekend before Christmas, and that was quite an adventure! The girls had never been, and it was great seeing the city fresh from their points of view. Neither Henning nor I had been to the City during the holidays, and we did have a few cranky moments in the crush of Times Square, but otherwise we had a blast. We walked over 120 blocks, and checked off almost everything on our “If you could only spend one day in NYC what would you do” list.

We had a quiet Thanksgiving and Christmas and spent lots of time with the girls. Our oldest lives next door to us, so spending time with her, her fiance and our grandson is always fun!! Megan and Larry are getting married on New Year’s Eve, so I’m thrilled that Henning will be able to be here for that.

We are sad to see his time here end. He goes back to Denmark on January 6th. So we have just a few more days together, this time around. We are already planning the next visit sometime in the spring.

Look for more posts as we catch up after a few months of just reveling in each other’s company.

We are launching a new site, as well. This page has served it’s purpose and while we have not yet decided what to do with it, we have decided, in light of all of our recent adventures and media attention (due to Henning’s astonishing journey and medical status) that this was a little too… little. Look for KidneyNerd.com, coming soon.

Happy New Year!!

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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

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.