Bob's Blog 3-2-13: Home is Where the Hemo Is

[BobN]

Bob Here.

It's two months in, and I hope everyone has a good start to 2013 going on.

Sometimes we go overboard trying to make a significant change in our lives around the New Year.  Maybe we're trying to prove to ourselves that, yes, we've talked about change in the past, but doggone it, this year will really be different.

At the start of this year, however, I really did make a significant change.

Fad diet?  No.  Promise to attend church more often?  No (sorry).  Major change in attitude?  No chance.  Gym membership so I can work out for a couple of weeks as part of my new exercise routine?  Well...yes, but that's not what I was talking about.

So, you're probably all thinking, what did you do, up and join the Marines on impulse?  Dedicate yourself to finding Noah's Ark?  Vow to jump out of an airplane and swim across the Pacific for your birthday?

Hah.  Nothing that simple.  No, starting in January, I decided that I would do home hemo.

Is that taking the plunge, or what?

Yes, I'm now doing my hemodialysis treatments at home.  With no attendants, nurse, doctors, EMT's, or SWAT teams nearby.

For the longest time, my position was that I would rather have my arterial needle inserted through my ear than have hemo at home.

This opinion presided despite the fact that my nephrologist had been riding my case to switch from in-center to home for a number of years.

Now, I know that some of you, especially non-dialysis patients, are probably thinking, wait, you can choose to have these awful-sounding hemodialysis treatments in the comfort of your own home instead of trucking to a dialysis center every other day?  And you chose NOT to do that??  Man, your corn flakes have really gone soggy.

Maybe a quick description of the conversation the first time I was approached about home hemo would clarify the situation and my stance on the subject.

It was early on in my dialysis life and the doctor associated with the center was doing his rounds.  Now those of you who have read my book or have followed my blogs know that I make no secret of my feelings for doctors in general. 

I don't like them.  There are exceptions, of course, but for the most part, doctors make me crazy just by walking in the room.

(Q:  You know how many doctors it takes to plaster a wall?
  A:  It depends on how hard you throw them.)

(Q:  Do you know what you have when you have 100 doctors buried up to their necks in sand?
A:  Not enough sand.)

Anyway, this doctor wasn't spending any time diagnosing me or anything frivolous like that, he was mainly interested in talking me into home hemo.  So when he came over to me one day, I started him off with a joke.

I said, "Hey doc, what did the one Japanese guy say to the other?"

The doctor says, "I don't know, what?"

I said, "I don't know either.  I don't speak Japanese."

He took a deep breath, let that one go and started in on the home hemo thing.

"So, what about switching to home hemo?" he asked.

"I'd rather fight than switch," I said.  "Ha ha ha."

He was just looking at me as if I had lost my mind.

I said, "Sorry doc.  Age appropriate joke.  It was from an old cigarette commercial."

"Cigarette commercial?  On television?"

I said, "Yeah, they actually used to have those.  How old are you anyway?"

He looked perturbed that I would ask him that.  "How old am I?" he asked incredulously.

"I asked you first," I said with a big smile on my face.

He didn't really want to tell me, but when I pressed him, he admitted that he was 38.

I just said, "Hmmph.  I've got sweat socks older than that."

Trying to get us back on track, he said, "So, what are your major objections to home dialysis?"

I held out my hand and said, "Slap me five doc."

Eight years of medical school and the best he could come up with was, "Huh?"

"Slap me five," I repeated.

He hesitated, but then came over and weakly slapped my hand.  I just sat there looking at him.  At this point, he was probably wondering if my glue had truly melted.

"I don't get it," he said finally.

I sighed.  "Five doc.  Five.  You know.  Five treatments per week?  Do I look like I'm having so much fun with my three treatments per week that I want to sign up for two more?  That'd be like asking for a glass of water on the Titanic.  Do I look like I'm into punishment?  Don't answer that.  Nope.  Not doing it doc.  Not doing five treatments per week."

As a sign of how clueless this guy was, he said, "Well, some of my home patients are on six treatments per week."

I just sat there staring at him in amazement.

So anyway, conceptually, home dialysis treatments have a lot of pros and cons.  Yes, the treatments are more frequent, but shorter in duration.  In my case, I now do five treatments at home at 2.5 hours each compared to my in-center regimen of three 3.5 hour treatments per week.

Those of you who are quick at math can see that home does mean more dialysis - 12.5 hours per week versus 10.5.  But since the treatments are more frequent, and you are getting your blood cleaned for more hours, you tend to feel better and the dietary restrictions are eased somewhat.

When I finally agreed to give home a try, the diet issue was clearly on my mind.  I was meeting with my current nephrologist and the home coordinator and they were talking up some of the technical aspects of the home machine.  The doc was all serious, but as we were nearing the end of the meeting, he said, "Any questions?"

I pulled out a twenty dollar bill, handed it to him and said, "Yeah, could you run out and get me a pizza and a coke?"

He just snorted, but the coordinator looked like she was going to burst.

The other big advantage to doing home is the flexibility.  You can basically do your treatments any time during the day as long as you get your five (or six) treatments per week.

In other words, you're no longer a slave to the schedule of whatever center you're going to.

When I finally made the decision, I mentioned it to my in-center neighbor, a guy I'd sat next to for a long time.  You may remember from a previous blog that the two of us had an ongoing challenge to see who could crack the other up.  We had discussed home treatments many times and, to put it mildly, we were not looking at the option favorably.

So, one day I came sauntering in to my usual place.  My neighbor's treatment was already underway.

"I'm gonna do home hemo," I said.

"Hah hah.  Very funny," he said, not looking up from his book.  "I'm gonna be the new pope."

I said, "No, I'm serious.  I start my training next week."

He looked up.  "What are you?  Nuts?"

"Well...yeah, maybe."

"You know you have to do five treatments per week?"

"Or six," I said, remembering the clueless doctor.

"Huh.  You mean you enjoy these treatments so much you want to do some more of them?"

"But, I'll have total flexibility.  I'll be able to do treatments whenever I want."

"Oh, so you have a lot of other social engagements you can work into your schedule at 5 a.m. when we usually start our treatments?"

"Well, you know if you do five treatments you can ease up on the diet restrictions."

"Yeah that would be good."  He went back to reading his book.  "Anyway, you can tell me all about it, when you abandon the whole foolish idea and come back to the center.  You probably won't get your prime seating arrangement back," he said, nodding at my chair.

"Well, these are the risks you take in life," I said, laughing.

The discussion brought all the doubts I had about home hemo flooding back.  But I was determined to give it a shot and see if the pro's truly outweighed the cons.

Anyway, doing home treatments involves four weeks of intensive training.  Since I'm what could be politely described as "technically challenged," some of the training sessions turned into a comedy of errors.  There's a whole future blog in the works on that fiasco.

In the meantime, when my wife is asked how the home treatments are going, her response is, "Well, I haven't killed him yet."

Very encouraging.

So, what would I say now, after doing home for a couple of months?  Well, it's kind of like your doctor driving off a cliff in your Cadillac - mixed feelings.

I'll have much more on the whole home odyssey going forward.

Thanks for reading.  Hope all your treatments (dialysis or otherwise) are good ones no matter where they take place.

Take care.

[Riki]

I'd love to try home hemo.  I did PD for years and I miss the flexibility that I had with it.  I have several strikes against it however.

1.  I need someone else to put my needles in, as I'm legally blind and not a contortionist.  Also, my mother refuses to do it.

2.  It's not available in my backwater province.  I'm not sure if it's available east of Quebec.

I've also thought about nocturnal dialysis, but again, it's not available here.

[BobN]

Riki, I hear you.  The flexibility is good, and I'm putting my own needles in.

Sorry to hear the option is not available to you.  Maybe as the science advances, more people will have access to home.

[Riki]

I don't think it has to do with science.  I think it's more of a resistance to change.  I do think that those who make the decisions of what can be offered and what is not will have to go to different modalities of dialysis besides PD and in centre hemo, and soon.  The numbers of people starting dialysis in my province has steadily gone up in the last 5 years, and I've seen that much myself.  When I started hemo 4 years ago, the unit I was in had 7 chairs, and 3 of them were usually empty.  By the time that unit closed in September, it had 9 chairs, and the unit was running over capacity.  The new unit has 18 spots.  They're only supposed to be using 14 of them, but they generally use 16 of them.  Something will have to be done so that this new unit, after only being open for 6 months, isn't running over capacity.  I think home hemo could be an option, and I certainly would give it a shot if I had someone who'd put my needles in for me.

[monrein]

I don't think it has to do with science.  I think it's more of a resistance to change.  I do think that those who make the decisions of what can be offered and what is not will have to go to different modalities of dialysis besides PD and in centre hemo, and soon.  The numbers of people starting dialysis in my province has steadily gone up in the last 5 years, and I've seen that much myself.  When I started hemo 4 years ago, the unit I was in had 7 chairs, and 3 of them were usually empty.  By the time that unit closed in September, it had 9 chairs, and the unit was running over capacity.  The new unit has 18 spots.  They're only supposed to be using 14 of them, but they generally use 16 of them.  Something will have to be done so that this new unit, after only being open for 6 months, isn't running over capacity.  I think home hemo could be an option, and I certainly would give it a shot if I had someone who'd put my needles in for me.

I've never been on D in PEI but I was on home hemo, many years ago (1980-1983) in Nova Scotia.  I was living in Wolfville at the time but my hospital was in Halifax.  I did my own needles but they would have been happy to train a partner to do them if that was what I wanted.  Home hemo was encouraged for patients who were willing and able because it saved our system a lot of money as well as being more convenient and pleasant for many patients.  The same was true here in Ontario when the hospital in Toronto outfitted my cottage (an hour away) with a machine.

[Riki]

There was one person doing home hemo here, but I don`t think he does it anymore.  He bought his machine and had his house outfitted for it.  I think the govt was paying for a nurse to come in and help him, but they stopped the funding for that.  His health has declined in the last few years, so I think he`s gone back in centre.