Friday, January 15, 2016

Always Another Baby Step ...

It's odd how our perceptions change.  How something that is completely unacceptable one moment can morph into something that seems perfectly reasonable.

I've always hated writing about health stuff here. It feels like whining ... like begging for sympathy from a world with people who have lives so much harder than mine. I've even considered starting a second blog JUST for my kidney issues ... but common.  I don't have enough energy these days to post here.  Why start a second blog to be ignored and neglected?

So there are two types of dialysis - peritoneal dialysis using a stomach port and hemo dialysis using a fistula on your arm.  Okay, yes there are technically more options ... if you find yourself in the ER with kidney failure, they can (and will) shove a catheter into the side of your neck and dialyze through that type of port.  But we aren't discussing catastrophic situations here. 

I'd decided on peritoneal ... it doesn't involve blood or needles and I was under the impression you did exchanges while you slept.  In my mind, I'd imagined hooking myself up before bed ... and unhooking myself in the morning.  Simple, clean, and it wouldn't involve anyone else having to be a caretaker.  That's an issue with me ... something I really wanted to avoid.

But apparently I was mistaken. Peritoneal DOES allow you to do dialysis without working with blood or needles ... but it involves MUCH more time. Ten to twelve hours of time.  What that means is that, for many people, you go home ... hook yourself up at seven o'clock ... and then unhook yourself at seven o'clock the next morning. Twelve hours. Every day. For the rest of your life.

I'm numb with the thought.  I don't even know how that fits into a normal lifestyle. So you can't ever do anything at night for the rest of your life?  The surgeon told me that there's wiggle room ... if we wanted to go to dinner and a movie on a Friday night, that was fine. I could hook myself up at ten o'clock with no problem. But then I couldn't unhook myself until ten o'clock on Saturday.  How would you travel?  How would you have friends over?  I'm still heartbroken.

And so ... it was a short hop from "I won't work with blood or needles" to "I won't tie myself (or us) to the house for twelve hours every day."

So now I'm considering hemo dialysis. Unfortunately, that type, once again, involves blood and needles. Maybe that should be the name of my new, kidney-related blog?  Blood and Needles or (My kidneys Are Trying To Kill Me).

So there was a hop ... from peritoneal dialysis to hemodialysis ... and once you're there?  Once you have no choice but to be there, what's another hop?  To go from in-center to in-home? 

With hemodialysis, you spent 3-4 hours three days a week hooked up to a machine that cleans your blood. You can do that in a center ... and a lot of people do.  But if you can learn to do the technical bits yourself, you can dialyze in-home.

So let's look at the choice ... to leave work and go to a center ... where I'll sit from five o'clock to nine o'clock ... three days a week.  Or two days a week if I can get on the Tuesday/Thursday/Saturday schedule.  If I could manage that, I'd just come home late two days a week and then spend Saturday morning at the center each week.

Or ...

Come home from work ... have dinner ... and then, two days a week, hook up and sit for three or four hours at home.  Watch a movie ... talk to Stoney ... watch the Goldbergs ... color ... crochet ... whatever.  Then maybe on Saturday or Sunday while Stoney watches football ... hook up and nap while I'm cycling?

Don't get me wrong. None of this is good. There are no silver linings and there's no, "But, hey at least there's THIS!"  It all sucks and it sucks hard.

The trick lies in finding which one sucks the least.

I have to talk to Matt at the dialysis center again ... he's the RN Who does the training. I have more questions ... more things to nail down in my head. And then I guess the only thing left is to get the fistula.  You can do that at any point ... but it takes 2-3 months for that new vein in your arm to grow strong enough to use ... so you have to start planning ahead for when that time comes.

And the time is coming. I'm holding it off as best I can ... but it's coming.

'Cause love's such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure

Queen - Under Pressure

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