The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Thursday, October 14, 2010

What it's like....

Sometimes I think people have this image of dialysis as being this minor little procedure I do, and the am done with it.

It's actually, for me, a pretty involved process.  Because I do it at home, I have to prepare all my supplies prior to treatment - laying out protective "chucks", gauze, tape, needles, alcohol prep pads, sterilization pads, etc.  I draw up 4.5 mls of heparin, a blood thinner, into a syringe - which is an easy process, but you do have to maintain sterile technique while opening packages for the syringe, needles, etc. I lay all that out, and then I grab a 1000 ml bag of saline solution and I hang that on a hanger above my NxStage machine.  The NxStage Machine uses "cartridges" that are placed in the front of the machine - you push several tubes into several slots, close the door, and then "spike" the saline bag with the lines off the cart.  You "prime" the machine, which runs the Saline through the lines, preparing the dialyzer for treatment.  It takes 15 minutes to prime.

In the beginning, we used "bags" of pre-mixed dialysate solution - this is what is pumped into the dialyzer during treatment, and it's this solution (with it's proper mixture of chemicals and minerals) that clean your blood through osmotic treatment. Now, though, I have a machine called a "PureFlow" which mixes up 60 liters of fluid per batch.  It takes seven hours to make a batch, so I have to make sure I make one well in advance of treatment.) I use between 20-25 liters a treatment.  With the 5 liter bags, I had to hang 4 or 5 at a time, and they were heavy - so the PureFlow is great.

When the cart is done priming, I have to snap and tap the lines to make sure no air is left in the lines.  You don't want an air embolism going into your blood stream, as it could travel to your heart and potentially kill you.  Yay.  I do live dangerously people.  So once I'm done snapping and tapping, I make the final line connections - connecting the PureFlow to the cartridge, and entering the treatment parameters on the front panel.

This is an involved process.  On a good day, I can do it in less than a half hour, but it usually takes me longer.

And then there's dialysis itself.

I'm often asked: does it hurt?  For me, the answer is no.  Besides the small amount of pain I feel when the needles pierce my skin, the actual treatment doesn't "hurt".  However, I am required to remain in one position for several hours - I cannot move much, for fear of dislodging the needles.  So I keep my arm and body very still.  You can't shift positions other than very subtly - this might not sound bad, but try, as an experiment, to NOT MOVE AT ALL the next time you watch TV.  No laying down, no shifting your weight, no getting up to pee or get a snack.... nothing - and hold your right arm completely immobile at your side on the arm rest.

I've had people say to me "Well, don't you just sit around and watch movies?"   Yes.  Yes, I do - but, like I said, it's not the relaxing, comfy movie-time we all love.  I'm used to it now, after four years, but it took some training to get me not to move - and several times early in my career as a dialysis patient, I "infiltrated" because I moved my arm too much.  That's where the needle comes out of the vessel, but it still under the skin - thus the machine is pumping blood under your skin, not in your vein, causing pain and swelling.  It's about as fun as a porcupine mud wrestling marathon.

Dialysis also requires the removal of all the excess fluid you accumulate - think about it, every time you drink a can of soda (355 ml) or a bottle of water (500 ml), you gain that much weight.  1000 ml = 1 liter and 1 liter of fluid weighs 2.2 lbs.  You can gain a lot in water weight if you drink too much and, like me, don't pee it out.  So dialysis removes that for me.  Sometimes, though, my "dry weight" will fluctuate.  (Dry weight is what your body should weigh with no fluid on it) and when that happens, sometimes I can take off too much water - which results in pretty awful cramps.  I can give myself a bolus of saline for those times, but even then, I'll feel like crap the rest of the day.

So, yeah, dialysis isn't some walk in the park, oh just go and do it while you watch TV event.... it sucks.  Sitting in a comfy chair and having a TV make it more bearable, but I would rather be NOT sitting in the chair and watching TV.  I'd rather be anywhere but there.

~Steve

4 comments:

  1. Great writing as always, it does not sound like a good time. I find it ironic that under this was blog there was an ad for a crappy article on How to Avoid Dialysis, nice placement google!

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  2. Hi Steve,
    I probably shouldn't have read this at work because I'm going to have to cry in the bathroom but I wanted to say thank you for this blog. We're always so excited to see you at camp and eager to have you regale us with music but not everyone (including me) is very sympathetic to what you go through on a day to day basis. For as great as you make each camp visit with music or Dr. Wu (or even by offering your site's shower)I feel like I don't give your condition the understanding it deserves. Our family isn't always good at addressing the tough stuff, but I'm really sorry for not taking it upon myself to better understand the full reality of your daily struggle. I promise to do better in the future and again, thank you so much for having the courage to do what you do every day and then to put it into words.

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  3. Aw, Betsy - thanks. That was really sweet. We really appreciate it.

    ~Steve and Jordan

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