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!!

No news…

…is good news, right??

As an excuse for not posting recently, it’s a good one, no?

I have stopped going to dialysis with Henning, so I have far less to report lately. He tells me all is well there. I stopped because while it is important for me to know about the machine and how to set it up, tear it down, etc. for when he comes home, I felt that my presence was hindering HIS learning process. He was becoming snappy and irritable with me. On top of that there were issues with his blood pressure and pulse, and his stress over our different learning styles was not helping… So one day, after he totally lost it on me after I recorded what he was sure was a false reading, I just walked out on him. There are nurses there to do what I was doing, after all. And they get paid. It works better this way, I think.

The only down side is… Henning isn’t a great historian, as we used to say during intake when I worked at the hospital, so… I didn’t have much to pass along.

But now I do:

Henning has regular blood work, and his numbers are fantastic. His levels of the more troublesome minerals are within normal limits, for the most part. Normal for healthy people. Which is practically miraculous.

He also just had a kt/V test, and the results are good. He is dialyzing efficiently, and getting good clearance. That news, combined with his usual blood work results, tells us that he is doing fantastic!

His dietician, Eva, is wonderful. I can’t say enough good things about her. She  has a passion for her work that surpasses probably everyone’s I have seen here in Denmark, so far. She also has a great sense of humor. She’s the one that told us months ago that Henning’s numbers were miraculous for not being on dialysis. The last time we saw her, she said, “I don’t often see numbers like this with dialysis patients. Actually, I never have.” LOL

She discussed healthy food choices, but we also talked about empowerment, how to get the patient to BE the hub of their own health care team. I really enjoy talking to her. If every medical professional had her passion and COMpassion for their patients it would transform medicine.

Henning is still dialyzing via catheter. The fistula seems to be doing well, but no one has dared stick it yet. Henning is getting it scanned soon, and if the nurses continue to be hesitant, the vascular surgeon (Johnny) has offered to draw pictures on Henning’s arm along with directions… *sigh* Johnny has actually done that before, he’s not even kidding. Unlike Eva, the man has very little sense of humor.

Medically, Henning is doing great. But he is still often tired and itchy and “spacey”. Since we know it is not directly related to dialysis or his diet, we are looking at other possible sources for his lack of feeling “well”. It may be exercise, it could be all the stress of the past many months catching up with him, it could be many things. But since it is not caused by anything medically acute, we can relax a bit and take some time just “being” while we investigate.

Our marriage took place amid a whirlwind of medical drama and stress, so we are taking a delayed Honeymoon soon. I am looking forward to this time away from our regular life: house, job, kids, illness, stress… and when we come back, I hope we will both be rested, refreshed and newly ready to tackle what life tosses our way.

 

 

 

 

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 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….