To Live and Dialysis

As I've mentioned, I've been in Chicago on family business while the elves back at the homefront have been keeping every thing else running smoothly (probably even better than when I'm there...)  The reason I'm here is that my dad, who'll been 93 next month, had to start dialysis.  And therein lies the tale.

When I wander around the residence where my father lives, it tends to take me twice as long to get to my destination, because all along the way I get stopped by people calling out, "How's your dad?  What's going on?  Is he at the hospital? Tell him that we miss him at dinner.  Tell him that we miss him at the short story group.  Tell him we miss seeing him."  I sure will, I always say, and then add, as politely as possible, "And can you remind me your name..."  (I do recognize them, usually, and know some of their names, but for the most part I don't have a clue.  One guy, who's the most aggressive by far and even a bit intrusive about it -- and hard of hearing -- always stops me whenever I'm within 50 paces and shouts, "HOW'S YOUR DAD?  WHAT'S WRONG WITH HIM??"  HUNH??!  WHAT'D YOU SAY??! " The problem is, it's clear that he more than most is sure I know his name, but I don't have a clue and feel awkward asking him.  So, the best I can do with my dad is try to describe the guy, but "Old, gray hair, sort of bent over" doesn't help much here.  Then I finally had a brainstorm -- one day, I took out my mobile phone and surreptitiously took a picture of him and showed it to my dad.  "Oh, that's Herman Belkin" -- or whatever his name was, I forget -- "nice guy, I used to play golf with him.")  I've always come up with a good default answer when I don't want to give a long response.  When asked, "How's your dad??!", I say, "Well, he was better 40 years ago."  They laugh, say "Weren't we all," I add a quick "He's okay, we'll see," and we move on.  Though usually, I try to give some sort of answer.

(With "Herman Belkin", I also came up with a good trick, to keep him from drilling me with questions.  I'll say, "He's getting better" and then quickly turn the tables and ask, "And how are you doing??"  People here looove to tell you how they're doing, it's the national pasttime, so  immediately it changes his attention completely.  The downside is that I now have to listen to how he's doing.  But that's okay, I don't mind.  And it's not me doing the talking.  Besides, at any moment I can use the default, "Well, I really hope you feel better" and head off.)

That was then, this is now.  And now when stopped, I go for full disclosure, but a) it gets to the point quicker, and b) leads to the point I want to make.  So, when asked now, I tell people he's having dialysis.  What happens at first is that  their faces all drop.  "Ohhhh, I'm so sorry to hear that."  But -- no, I tell them.  And get to the point.  This isn't a bad thing at all.  It's a good thing.  It's not like they just discovered he has kidney problems, I explain.  He's had failing kidneys for the past year, but now he's getting treatment for it and seeing real benefits.

Boy, howdy, is he ever.  This is what all this rambling is getting to.

For nearly the past year-and-a-half, my dad has been pounded -- by several things, but in large part by his kidneys going bad.  He hasn't gone out for any socializing, just for doctor's appointments.  He hasn't even felt like simply going downstairs to dinner. He's had terrible physical side effects from it that have been ongoing painful.  He's gotten bloated, pale, lost his appetite, lost his sense of taste, and lost most of his energy.  (Don't worry, I'm saying all this for a reason.)  When he was just in the hospital, getting the dialysis tubes put in, he could only walk from the bed to the bathroom, 15 feet, and it would exhaust him.

And within merely a week of starting dialysis, almost all of that has reversed.

Days after coming home, he'd take exercise walks of 100-150 yards -- and not be out of breath.  He eats about 50% more now, and is even starting to taste some flavors.  Color has come back to his cheeks -- everyone is commenting on that, "You look great, Ed,", the bloating has disappeared, he doesn't fall asleep remotely as much during the day, and almost best of all, most of the painful physical side effects of kidney disease have completely gone away.

So, like I say to these people who stop me and are so sorry to hear he's on dialysis, "No, you don't understand, this is A Good Thing."

But that's only part of the story because there's one other change that arguably is the best (or at least more surprising) thing of all.

As I said, for the past year or maybe even year-and-a-half, my father hasn't gone out or even gone downstairs to have even a single meal.  People have brought it up to him so often -- just a short meal, just a brief visit -- that he'd just put up an enough-already, stop asking already, brick wall and snap a brusque, "No."  Period.  N-O.

On Thursday, a cousin of his was having a sort of family open-house.  Another of his dear cousins would be there, too.  I was going, and would serve as his rep, but not him.  And then a couple days before...he said he really wanted to go, and went!  It was his first social visit in a year-and-a-half.  And he said how much he enjoyed himself.  (He also wasn't the oldest there -- or even second oldest.  His cousin Elinor is 98.  Cousin Marion is 96.  My dad's the kid at 93.)  When Elinor saw him arrive at her house -- she didn't know he was coming -- she burst into tears.

That's not all.  His club holds a yearly party to open the season.  And he always loves the party, but didn't go last year.  This year, the party was the next night after the family open-house -- yesterday.  And last night...he went to that, as well.  He ate more than he has been lately, could taste things, and had a wonderful evening for two hours.  This wasn't anything intimate and quiet, about 400 people were there, and it could have been sensory overload for him, but he wasn't wiped out by it at all.  (In fairness, he didn't really mingle, but went to our group table in a side room and socialized there.)

And even that's not all.  This Monday, the residence is having a Memorial Day BBQ.  And he wants to go to that, too.  So, what this means is that after maybe a year-and-a-half with zero socializing and not going out at all, he'll now have gone out to three big events within days of each other.

So...yes, having dialysis is A Good Thing.  No, you don't want to have your kidneys shut down.  That's pretty horrible.  But to have the option of dialysis is remarkable.  As I tell people who say, "Oh, I'm so glad he's okay now," there are still plenty of issues, he's not "well," but he has a quality of life now that had disappeared.

The reason he hadn't done this before is that he'd been told he wasn't a candidate for dialysis, that it would be too much of a strain on his heart.  But it turns out that that's only for homeodialysis, which is what most people think of -- done three days a week in a hospital.  But peritoneal dialysis is another matter entirely.  That's done at home, usually overnight, while you sleep.  Because it's done more slowly over the length of the night and done every night, there's less stress on the heart.  It's a much more convoluted process than just going to a hospital and letting do everything, and if you bring in someone to handle it (who stays through the night), it's much more expensive.  People can do it on their own, or have family members do it, but there's a great deal to manage, and it must (MUST) be done anti-septically with great care, or there risk of serious infection.  But as I said, it's done while you sleep, and so you have your whole days all left open and free.  (Which is the only thing free about it...)

By the way, my dad was feeling well enough last night at the club that we could have stayed even longer, but he wanted to be sure to get back home when the caregiver arrived.  As he quipped, "I don't want him to start the dialysis without me."

Anyway, that's the point of it all.  Needing to have dialysis is not a good thing.  Having dialysis is a great thing.  Once upon a time, there was no option.  You faded.  Now, within only one week, he has a quality of life that had been gone.  We're told he should keep feeling even better for maybe three months, and at that time things will level out.  So, I look forward to him starting to go downstairs to dinner, which I'm sure will happen.  And even if he's not "well," boy, does he ever have a better life than he did before.

Before, people would ask, "How are you doing, Ed?" and he'd explain how miserable he was.  Now, you ask, and he says, "Not bad."  Or "Okay."  Or even sometimes, "Pretty good."  There's no comparison.

Anyway, that's what's been going on here for the past month.  If postings have been more random or less discursive than usual, now you know why.  But it's all been for a good cause.

Health care.  It turns out to be a good thing.  Go figure.