YOUR story/experiences

We'll go with John (always wanted a plain name !)
35/Male
Qualified Medication Assistant at a Long Term Care/ Transitional Care Facility
Started Hemodialysis 10-22-09

I have been diabetic since age 7 in moderate control. You could set a clock to my vitals until about 3 years ago. BP started fluctuating. After a brief hospitalization with throat surgery, my kidneys had a temporary "shutdown" and the docs recommended keping an eye on them. No abnormal health problems until April of 09, again hospitalized with BP of 220/140, I swelled up like Elvis after discharge, but it went away after a week. Nephrology dropped the ball on 2 subsequent follow up appointments that were both scheduled 6-8 weeks out. So right after my 35th birthday I began swelling moderately. When it got bad enough that I couldn't breathe comfortably and my coworkers said I looked fatter, I decided to go to an emergency room instead of waiting 2 more weeks for a possible successful attempt at a nephrology appointment.

Diagnosis after 5 hours in ER and some crazy labs that got crazier looks from the staff on why I waited. Next day they ripped an artery that they embalm ppl with out of my chest and attached something called a permacath to it. I'm a sexy beast with plastic hanging out slightly below my clavicle on the right side of my chest now. I went about 6 weeks later to a cardio surgeon for assesment to place an AV Fistula in my left (non-dependant) arm. A nice little 3 inch incision in the bend of my arm. The staples came out this week, right before Christmas with a follow up doppler on 2-23-10 for hopeful maturation and many follow up showers, which have been banned since the permacath was inserted due to risk of infection (periocarditis).

As for the actual treatment...I wasn't really given options. There was supposed to be an options course (insert date here) but social services dropped the ball and I already had a permacath in with cardio dying to cut on my arms before I even knew about PD. So I just went the hemo route. It gives me a chance to hang out with all the people on walkers outside of working with them

. So I'm the only person under 40 where I go and 1 of 3 under 50ish there.I'm not supposed to know their info but most of them are residents of the facility I actually work at. It's weird being a patient with the people I take care of.So far my "care team" has been a mix. I love all of my techs, they know to watch for me to go critical in the last 45 mins or so. The charge nurse listens to me now when I have a concern. Now if the docs would listen it'd be awesome, and I might live to see my next birthday.

The first nephrologist I met speaks English, but his grasp on it has something to be desired. I asked for xanax at one point to help with the adjustment period and he prescribed atarax ( anti-itch in laymanss terms)...I got nervous at that point. So far the docs and Nurse Practitioner have yet to get my BP under control, which is the reason my kidneys bit it. I average 180/95ish on my BP and sit on the edge of stroke everyday, but they keep doubling the dose of toprol ( which is ineffectual). We went through these pharmaceutical issues with my younger son, so I'm trying to be patient with mine and pray that the insurance companies dependence on a nice monetary buffer from the pharmacy won't kill all of the ppl with high blood pressure out there.

So I wasn't prepared for some of the issues in dialysis. Like pain. I never knew there was pain. It comes in the form of severe muscle lock up for me. Mostly in the calves and feet. This last time I had it in my hands. I've been warned diabetics get it in the back and stomach. I'm not looking forward to that. The only apprehension I get now is the fact that when I volunteer to strap into the machine may be my last time. They've almost coded me twice in my short time on treatment. Which is to say my BP hit the 90/45ish range and dropping. That's a truelly weird feeling...everything gets hollow and it literally feels like a calm but tense feeling of your soul leaving. I got nervour=s the first time...the second time I wanted to change my code status and maybe take the easy ticket next time it happened. With all this I'm up in the air on death, I woul'n't mind it...I just don't want to suffer. Sometimes I still think I'm too young to realize my mortality.

I want to see my kids grow up and maybe be a grandpa...my oldest is 14 currently...but I don't want to have my kids/grandkids/family in general watch my slowly fall apart and remember me as "he was always kind of sick before he finally went". I laugh when I say these things about myself because that's how I/we at work describe our patients. And now I am one! Anyways, that's the general story, if want or need anymore specifics, I'd be super happy to talk about it...maybe the story will help somebody out there.