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Darlene M Caban

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Lessons learned on dialysis
by Darlene M Caban   

Last edited: Wednesday, November 06, 2002
Posted: Wednesday, November 06, 2002

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After seven years on the machine, I've learned a few things about myself and life.

This month, I'll have been on dialysis for 7 years... when I started, I never thought I'd live this long. I went through a LOT of complications, and was in and out of the hospital. Now that I'm a 'vet', I've seen new patients go through the same thing and I've concluded that there is a 'dues-paying' period when you start dialysis: Constant problems with your dialysis access, clotting, nausea, vomiting, passing out at treatments, and just feeling like crap. It seems like you take a step backward for every improvement-- you fix one thing, and three more problems pop up. I think a certain amount of depression is necessary and normal-- dialysis is an invasive, barbaric procedure, and your body and mind take a real beating from it. Friends and relatives can't understand the magnitude of the changes it causes in your outlook-- they expect you to be your 'old' self, but you really can't be. Until their butts are in that dialysis chair, they'll never know what it's like to live with kidney failure... the hours of treatment, the pain of the needles, the restrictive diet, the unending thirst that can never be satisfied.

There's been plenty written about the importance of a positive attitude when dealing with being on dialysis, but I think a certain amount of depression is unavoidable-- and shouldn't be medicated away. The nature of dialysis treatment reminds you that life is fragile, and that your lifespan will be shortened-- so introspection becomes important. You have to re-examine your priorities, because you won't have time to do everything you want... you have to decide what's really important. That may include severing relationships with people who don't support you emotionally and who drain your strength-- you need that strength for yourself now, and shouldn't waste it fighting people who are ignorant.

In a weird way, I now have more freedom since starting dialysis-- I don't have to work in a factory anymore, I have my own apartment, and (aside from 3 weekly dialysis treatments) I basically do what I want, when I want... and I can SAY what I want now, too, because I know my time is limited and I no longer care about getting people mad at me. After years of biting my tongue, I'm finally saying what I mean instead of searching for a polite way to put it. Sometimes, there IS no polite way to say, "Hey, quit being such an asshole!" I no longer wonder what I did to provoke someone else's rude behavior; I now realize that some people are just jerks and there's no way to educate them out of it.

I also no longer take it personally when someone comes out with a line like, "Oh, I wish someone would make ME sit in a recliner for 4 hours!" People who say crap like that think they're being funny, because they don't know how to respond to your medical condition. Usually, an evil glare shuts these people up. If someone truly wants to know more about dialysis, I am more than happy to talk about it... but let ME make the jokes, please!

One thing I'm very grateful for is the fact that I don't have diabetes-- most of my fellow patients have it, and it further complicates dialysis and reduces their lifespans. They fight so hard, they make me feel guilty for enjoying realtive good health. If there was any way for me to donate part of my life-force to these people, I'd do it.

The 'pre-dialysis me' was a short-tempered factory employee who really didn't care about anyone else but herself... the 'dialysis me' is a lot more concerned about other people. I might have lost my kidneys, but I think I've gained a lot more.

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Reviewed by Shar Phoenix 12/23/2002
You write with clean, incisive honesty and this is a very important piece for folks on both sides of the recliner and for medical professionals.
Keep it up - we've gotta get the word out, to make a better world! I'm glad to be working beside you.
Thank you so much!
Reviewed by Sharon 11/20/2002
It is always a pleasure to read your posts. You have a gift with words and express yourself so well. I'm not writing these days since WBM closed, but try to check on my favorite people from time to time. You are on the top of my list.
Reviewed by Matthew Wright 11/6/2002
Yes, you're an inspiration. How you deal with all that, I don't know. Dialysis seems so tough, although I can understand how it could have some benefits, as you describe. I try to have such a positive outlook.
Reviewed by Karla Dorman, The StormSpinner 11/6/2002
(((HUGS))) darlene, for this informative article...i think it ought to be required of anyone considering entering the medical field to be forced to become a patient in a hospital for two to three'll give them more compassion! until it happened to me (five surgeries and ten hospitalizations in two and one half years), i had no idea...and i was a ward clerk! i sure empathize with people now...because i may have walked in their shoes...excellent write, darlene, hope you continue to improve and inspire! (((HUGS))) and love, karla. :)

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