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.

Another day of waiting…

I can’t WAIT to have some good news to put on here. I will tag it and categorize it and put it on facebook and twitter and perhaps even shoot off fireworks on that day. Today… is not that day.

We arrived at 9:30 for our scheduled chat with the head doc. Henrik something. The very same doc who teased the nurse last Wednesday, so my impression of this guy is not that great. But whatever. You don’t get to pick who’s in charge.

AGAIN there was no one at the front desk. Seriously. Perhaps at 4 or 5 in the evening, I can see someone having to step away to take care of something… but at 9:30 in the morning? And AGAIN… they were not ready for us. When the nurse finally noticed the two of us waiting, she immediately led us to a room to begin dialysis. She was ASTONISHED that Henning had an appt. to see the doctor.

Henning explained (as should be written somewhere in his chart?) that since the fistula was not working, they had told him to come in today to talk to the doc. Based on his bloodwork that was done Friday, then they would determine what to do. The nurse listened to the entire tale and at the end actually asked, “But, don’t you want to try again anyway?”

She left us in the doorway and … well, she just left us in the doorway. We found our way to a waiting area to… you know… wait.

About 10 minutes later, another someone (nurse? aid?) asked us if we wanted anything, coffee, water? I declined. The last two times we got all snacked up and comfortable, we were sent home. Henning had coffee. The main thought that I was having (besides existential thoughts like, “How big are souls, and how would you store them? Could eternal hellfire be no bigger than a votive candle somewhere on a shelf?”) was this: How in the HELL does hospitality compensate for a complete and utter lack of basic patient care?? But I digress…

About a half an hour later, we were told the doctor was busy, had NOT read the blood results, was all alone (yeah, poor guy) and would be with us when he could. Expect to wait another half hour or so… I should point out that we bring books, computers, snacks, etc. Not that we were happy, but at least we weren’t staring at the lamp, which was hanging by its cord, tied in THE most intricate knot, and no kidding, someone had used a PEN to tighten said knot in a very fascinating manner. Well… Henning wasn’t staring at the lamp, anyway.

Finally this guy shows up who is NOT Henrik something-or-other. He looks to be maybe 16 years old. That was Henning’s assessment. I would wager he has at least a decade more in him. But he DID look young, unseasoned, and worst of all, completely uncertain as to what to do next. He was also determined to call Henning by the wrong name. Which only enhanced my confidence. At least this guy wasn’t teasing anyone…

He had read the blood results and said yes, Henning (I say “Henning” so as not to confuse you, dear reader, because he persisted on calling him by the wrong name) needed a catheter. So… after talking to another nurse (the head nurse, apparently, who also told us that Henrik something or other was not even WORKING today), we headed downstairs where they would do the procedure. Today? Yes, today. I was not ready for that. I was gonna do more research…

We arrived downstairs (floor 9, as opposed to 11) and it looked EXACTLY the same. Except for one thing, THERE WAS SOMEONE AT THE DESK!! I know, I was astounded, too. But they were STILL not ready for us. Whew… I was worried for a second.

She asked for the paperwork. We didn’t have any… so guess what? I know, it’s a shocker. We were asked to wait. So we waited.

After a week or so, two nurses showed up to do intake. IN the waiting area. I kid you not. Vitals, questions, the whole nine yards. Right there. In front of God and everybody. For those of you not familiar with American slang, that phrase indicates a level of disbelief previously unreached. Which is saying something…

Then they came back a bit later, and started discussing the procedure… which was the WRONG one. They were going to put in the acute version… which is the one you get if you collapse on the street because ýou didn’t know you were sick. The one Henning is supposed to get is more durable, more workable for his lifestyle (he is still working, teaching, seeing clients, shopping, socializing, etc.), and has FAR less risk involved.

So… Henning told them that when they got it straightened out to call him back, we were leaving. And we did.

BUT… we were chased to the elevators by ANOTHER woman (higher up that the two with the vitals and intake forms, apparently) who all but blocked the elevator doors with her body as she pleaded with Henning to stay. She wanted to do more bloodwork (his level are pretty serious… yeah, we know this) to see where he is today (as opposed to three days ago) and was pretty worked up. As it turns out, his levels are no worse than they were last month, and yes, they suck. But no one was chasing us through hallways and throwing themselves down elevator shafts last month… so why now? But Henning relented, let her draw the blood, and THEN we left.

So now we wait… again.

Perhaps next time there will be fireworks? I hope so.

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.

For more information

I have said this before, but it deserves its own post: For more information, check out http://bigdandme.wordpress.com/ . specifically, this post: http://bigdandme.wordpress.com/2009/08/14/what-to-expect-when-you-start-dialysis/ . Don’t read the comments, though. They are long and depressing.

From there, check out Greg’s Top Posts. You will find out everything you might want to know (and likely more) about how dialysis works, what a fistula does and what it looks like, and why dialysis is not the end of the world, especially when transplant is not an option.

Dialysis, Take Two…

So… now FRIDAY is the big day, since Wednesday was a bust. We arrived, and again were made to stand there waiting. When we got to the room, the blood vials they were planning to use for Henning fell to the floor when the nurse moved the table. She was going to use them anyway… so at that point, things got serious.

Henning had a very nice conversation with the doctor and the nurses. Once he felt confident things were going to proceed differently than on Wednesday, the fun began again.

However, even after three very experienced (and CLEAN) nurses tried four times, no dice. His fistula probably needs more time to mature. So no dialysis… again.

But even so, today’s experience as a whole, while just as unfruitful, was definitely better than Wednesday’s.

What comes next? Good question, and one we don’t have the answers to yet. Henning has another appointment on Monday morning, and we will hopefully know at that point where to go from here.

Dialysis, Take One…

So this past Wednesday was the big day. After years of declining kidney function, and months of feeling generally worse all the time, and since he is not a candidate for transplant, Henning made the decision to start dialysis. It was a big day, emotionally charged, as you might imagine.

The experience was not great, to put it mildly. We arrived, and were left standing by an unattended desk for several minutes. That was probably the best part of the evening. Henning was scheduled to start at 4:30 pm (16:30 for those of you not in the states) for three hours, first time around. It will likely be 4 hours, 3 times a week, once it gets going.

We had a crowded, dirty room, harried, indifferent nurses, and a severe lack of communication happening between staff and us. The other patients were catcalling and heckling both staff and each other, it was madness. Ok, it probably wasn’t quite that bad, but it certainly felt like it. I have a friend who says I described it to her like something from a SAW movie… so I have toned it down a bit from that.

The nurse WAS busy, though. And if not indifferent, certainly more concerned with whether or not to wear gloves than communicating effectively with Henning. As for me, well, anyone here in Denmark who has tried to communicate with me knows I am good at the ‘smile and nod’, but that’s about it.

The nurse was finally able to get one line in, but not both. So she opted to try with just the one. It worked… for 34 minutes.

Then the machine started sounding the alarm, the other patients began offering comments, and the doctor came in, only to tease the nurse about her failure (NOT exaggerating that one, sorry to say). In the wake of a general flurry of activity that was not productive in any measurable way, we were sent home.

Henning was still feeling crappy physically, but the emotional kick was harder to deal with. But he did not come home empty handed. He ended up with a fantastically spectacular bruise.

Try, try again…

Thanks for reading!

Thanks for stopping in. The first few posts are going to be about where things are right now. Henning has his own blog that he is tweaking, so this may be short lived. But for now, I figured it was more important to get information out there, even if the site isn’t perfect.

If you have a specific question, you can leave it in the replies, or you can email us. Since we have discovered most people have a lot of the same questions, I do suggest you reply in comments, and we can respond once. That is kind of the purpose of this thing, after all. However, if you have sensitive questions, or really private things (I can’t imagine anything like that right now) or if you are just that shy (and I really can’t imagine that either, from those of you I know personally) I will do my best to see those questions or concerns are taken care of in a timely manner. I make no promises, nor will I define “timely”. 😛

If you are curious about kidney disease, kidney function, dialysis, or just having a really boring couple of days and have several hours to kill, I recommend this site: http://bigdandme.wordpress.com/

The guy is a lifer, so he’s on the level without being too dramatic. His posts link to other blogs and sites and he is a wealth of information. Most of what I (we?) know came from either his site, or someplace linked from his site. He also answers emails in a (relatively) timely manner, which I truly appreciate, but doubt I can emulate.

In any case, thanks for reading, and keep in touch!