About WriterMel

Mid-life crisis-ing my way through my forties.

Inspiration porn revisited

Disability Rights Bastard

In the past week I have encountered two incidents of the most insidious kind of inspiration porn that I have seen for a long time.

The first one is your typical picture where somebody with a disability is in a situation that is so perfectly normal that to me it is mundane. But apparently it becomes something ‘special’ to a bunch of people because one of the people in it is disabled. The other incident is a family who is exploited by the sort of idiots who create this particular nasty kind of trash by having a family image stolen from their blog.
Yes, they put the photo out there on the internet but nobody asked them if they felt like being exploited before their photo was stolen and exploited in the worst possible kind of way.

So the first story is an image I found on facebook. You can…

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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!!

Fistula success at last!!

Last week, Henning had his fistula scanned. Everything looks fine, so they decided to begin using it on Wednesday. The first stick, the nurse went straight through the fistula. He still has the catheter, so while he iced his arm and applied pressure, he was able to complete dialysis. He came home with a small bump and bruise that spread quite widely.

Friday, they tried again, and managed to use the fistula for venous access. He still used the catheter for the arterial access, and the fistula worked well the entire session. Success!!! If only partial. His pressure was great, and everyone was happy. But it also bruised pretty significantly. Hmm….

Today (Monday) they used the fistula for venous access only, but are concerned the fistula is not “quite ready” because of the bruising. *sigh* His vascular surgeon was sure it was “quite ready” weeks before… and offered to draw on Henning’s arm if necessary. Since Henning has a follow-up with him tomorrow, I’m wondering if Henning will come home with new ink…

In any case, slow progress is still progress. As long as the pressure is good, his cleanings are good, and he feels good (relatively speaking), I am happy. I wish it were all happening faster, but I feel that way about everything, usually.

Henning also has an appointment with the cardiologist tomorrow. While his blood pressure and pulse issues have responded to medication, they are fitting him with a halter to do a 24-hour check. The last time he had this appointment, he had to walk out before they saw him because they were so short-staffed and running hours behind schedule. He was going to miss dialysis if he stayed in the cardiology ward, so chose to abandon that appointment in favor of dialysis. His appointment with the surgeon tomorrow is two hours AFTER the cardiologist, so I hope they are doing better with scheduling. Afer all, a two-hour grace period should be MORE than enough.

*Fingers crossed*

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.

 

 

 

 

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. 😀

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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