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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And finally…

… we had a really fantastic day.

Friday morning, Henning went to dialysis while I prepared the turkey and side dishes. I managed my Embassy errand, and Henning’s dad was kind enough to play chauffeur. He didn’t even laugh when I started belting out, “Cecilia” along with the radio. What can I say. I was tired. Plus… who doesn’t love that song?!

By the time Henning returned home, dinner was nearly ready, and our first guests were arriving.

I can’t even describe the day. It was sublime. Everyone brought a dish to share, and all the food was spectacular. Our friends are amazing. Everyone was full of love and good wishes. We had jazz in the background, wine in the foreground, and we were all in great spirits. 🙂

The day ranks in the very top percentage of good days I have had. After the month we have had, to spend the very last day of it in such great company, surrounded with love and support, was truly a gift.

November is a month of Thanksgiving for my country. I have struggled sometimes with trying to find things to be thankful for, in the midst of all we have faced this month. I have been sarcastic, I have been angry, mostly I have been fearful… But, looking back over the month, it is clear to me how very blessed I am, to have the opportunity to live this life I chose with the man I love.

To everyone reading, thank you for all you have given us. I enter the holiday season with a lighter, yet vastly fuller heart, and I look forward to sharing more adventures with you soon.

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 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!!!

Why we started this blog

I just had a good friend suggest I put the “Why” here in a post, in addition to the menu bar, because she hadn’t gone farther than the posts… and figured not everyone else was looking, either. So, here it is. Please check out the other sections of this blog, if you haven’t done so.

We started this blog because saying how sick you are over and over again is draining and traumatizing, no matter how much you love the person on the other end of the phone.

When someone you care about is sick, you worry. You want information. You want contact. You want to know what is happening. Most of all, you just want to know that he or she is ok, at the moment. You ALSO want the person you care about to be a good correspondent.

When YOU are sick, dealing with the dramas of doctor appointments, tests, treatments, and generally feeling sick and tired, takes up all your energy. You just CAN’T be a good correspondent.

That is what this blog is all about. I hope it will be a space where Henning’s friends can come and get updates about his health, where he is with treatment, and basically have some reassurance, while at the same time freeing Henning from having to say the same things over and over again. Especially when they are not always good things.

Nothing takes the place of personal contact. But after a very bad treatment day, followed by many calls and texts from worried friends, that were largely ignored because neither of us had it in us to respond to each person, I said, “Enough is enough.” So if this works, great. If not, well… we’ll try something else.

Please feel free to leave specific questions or concerns on the blog posts.