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Friday, June 10, 2016

Cutting Loose

Last month we made the decision to switch dialysis companies and nephrologists. This was a big decision, maybe an order of magnitude bigger than switching from cable to satellite TV. Dissimilar particulars drive these two decisions, but just the same it's uncomfortable for a while; ultimately you hope to have better service once the switch is done. But, my expectations are always tempered these days, so we have no illusions that the grass is necessarily greener. Let's face it, dialysis sucks no matter who's administering it.

This decision actually began to take shape about 18 months ago when I was in for my stem cell transplant (SCT) at Duke Hospital. There my doctors insisted I be on hemodialysis (HD) during the process. Apparently never before had an SCT patient on peritoneal dialysis (PD) gone through the program (which was a surprise to us). So, they understood, or at least had the playbook for, HD during SCT, but not PD. When I say, "had the playbook for," I mean I believe doctors know well what has or hasn't worked in the past, but don't always understand the horrible complexity of every single human body. They understand a lot, but there are just some things that are unknowable until you try them. Then they go into the playbook as do or don't.

The night I arrived for my SCT one of the Duke staff nephrologists stopped by and asked if I was doing PD at home. Yes, I said. Oh, good, so you're dong it here in the hospital, too, then? No. And that was the end of it, my doctors insisted to him it was HD all the way after he inquired about it.

So I made a couple trips in my bed from the relative safety of the SCT ward down to the dialysis clinic. This in itself is a risk for someone whose immune system has just been chemically bombed out of existence. In my safe little pressurized, individually medical-HEPA-filtered air room in the pressurized air safety of the SCT ward, everyone else was required to wash hands before entering, and wear surgical masks in my room. On the dialysis field trips, however, it was the reverse: it was me who had to wear the mask. For the whole 4-hour trip. And let's also face the fact that it's not the healthiest bunch that lands in the dialysis clinic. Plus, they come and get you when they're ready, not when you're ready; regardless if you have eaten your breakfast yet, etc.

They arranged HD once in my room late on the very first (or second) night because the dialysis clinic was closed. My room was barely big enough to turn around in, and they wheeled in an apparatus about the size of two airline luggage carts. The nurse, God love her, was nearly half-engaged in the 4-hour process which began at about 10pm. There was a problem hooking up the water supply and a minor flood occurred. In my room. So not only did we have the dialysis machinery in there, and the nurse, but also now another guy with a mop.

So you might ask yourself how in the world is this minor circus safer than doing PD in your own room? My doctors were 1) pretty set in their ways; 2) not familiar with PD; and 3) apparently pretty influential around the hospital. The latter meaning neither us nor some staff-level nephrologist is changing their mind about it. And I'm not saying they're wrong, either: they know how they've done this in the past, and it's worked. Do you want them going off the playbook on you? They're very smart; and very protective.

On my second or third trip to the the dialysis clinic, I was huffing and puffing in my mask, trying to listen to music on my headphones loud enough to drown out my neighbor's Jerry Springer (seriously, having to do HD is bad enough, but this TV bullshit, too?). That day I caught sight of a tall and imposing looking figure doing rounds between the stations.

When he got to me he jovially introduced himself in a German accent as Director of the Dialysis Clinic there. He asked about my history. He got a puzzled look on his face and asked me if I wanted to be there. It seemed like an easy question, like some 2-0 fastball I could smash out of the park; how could he not know the answer? I looked around the place and said, "no, I'm not in fact enjoying this." After some more questions he got a determined look on his face and said, "I'll talk to your doctors. You should not be here, you should be doing PD in your room." I said my doctors were pretty set on it. "No. I will take care of it. Especially now that the chemo and transplant is done."

I felt a little strange, like I'd just tattled on my doctors, and sent in the big heavy to knock some heads and throw some chairs around the staff room on my behalf. It didn't matter what I thought, though, because he had in fact already made up his mind before any of this. If anybody could convince them, it was him. And did I ever want it to happen. We had tried, and the other kidney doc had tried. And now this doctor took the gloves off and succeeded, apparently setting them straight about the risks of HD (which was being done via large "emergency" port accessing my major arteries/veins) versus PD. He also seemed to be only one that really understood how PD would affect the administration of drugs (which can be a big deal). He was bit furious over the use of an emergency HD port during SCT and wanted it taken out (infection risk).

It was because of him I was then able to stay in my room doing PD privately overnight. What a relief. And this doctor checked on me pretty much every day for a week after; and his fellow did the same for a week after that. They made some adjustments to my PD prescription to make me more comfortable.

Here we were introduced to the Baxter cycler: the machine that automatically pumps the dialysis fluids in/out overnight. I had been using the one from Fresenius, a Liberty cycler. I had always complained that the Liberty cycler was too loud. Especially for sleepy-time. Anyway, this Baxter machine they put me on was so quiet we had had to ask if it was working at all the first night. What a difference. This one sounded like a little aquarium bubbling away. The Liberty machine sounds like one of those old Cox model engines from the 70's or a lawn-mower running low on oil.

I had complained on many occasions at my dialysis clinic visits about the noise level of this machine. Have you called Fresenius to get a new one? Yes, tried that. I mean, what can you even do in a case like this? In my own mind I knew it was a fatal implementation flaw. Not to be solved by stuffing in more insulation for Version 2. The requirements on this machine clearly did not include "within 8 feet of a sleeping person", or if it was, it was ignored or put at the bottom of the priority list.

One time I was talking about this while one of the substitute nephrologists was on rounds, one of the guys I don't really care for. Anyway, he's like "what? it's loud?" with the assurance of someone who's obviously never had one in his bedroom. Yes, I said, it's loud, I measured it with my sound meter: 62+ decibels. Which is above the level of normal conversation. Which you wouldn't think was so loud unless it was otherwise quiet and 8 feet from you at night.

Anyway, we finally came to the decision after a serious mix-up with my supply delivery last month. They shipped me an entire month's supply of fluid bags that were discolored and not clear enough to see through. We are trained never to use fluid bags that are not clear or are leaking, etc. These were not clear, or at least I could not tell if the fluid was. After several phone calls (one with a seriously bad customer support experience: they shipped a whole new month's supply from the same warehouse) and another delivery or two they got it sorted out.

This was pretty much the last straw, but I don't blame any one thing for our decision. It's a complicated decision with a lot of moving parts over a long time. I liked my regular nephrologist, and am grateful to him, but I felt like I needed to break from the routine. It just felt a little too institutional, not like individualized care; too inflexible. We fell into a boring pattern of monthly speed-dating visits. I think some of this can be blamed on the institutional treatment of the kidney failure disease. It's all wrapped up in Medicare and a lot of government interference, lowest common denominator kind of stuff. And none of that will change, unfortunately, by moving. But some is the culture of the clinic.

I will say the customer service from Fresenius was almost always good, other than the one big incident there at the end. Being put into that position of utter dependence is unsettling. But, they were diligent and the picked up the unusable stuff, and another shipment did come in time, luckily from another warehouse, arranged by a much more helpful customer rep. This one major slip-up just came at the tipping point.

So, it's off to another place, and a new company. And guess who's going to be my nephrologist? That tall, jovial doctor from Duke will be my nephrologist at the new clinic. And we are excited about that. He oversees all of the PD patients there, pretty much only him, which provides a good continuity of care. And since I'm on the kidney transplant list at Duke, and he's at Duke..., well you can see the picture.

I can say that one thing that has improved personally for me over the past 2 years is my ability to make these big decisions and move forward. I am grateful for everything my previous team has done, but it's time for me to move on, hopefully to an overall better place.