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Author Topic: What can I say about myself?  (Read 991 times)
Klopez15
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« on: January 25, 2016, 06:01:19 AM »

My name is Karen and I had kidney failure when I was 24. I was diagnosed with FSGS which basically is that my own body attacked my kidneys. This slightly happened to my transplanted one. I was on dialysis for about 3 months till my mother donated her kidney to me. It lasted for about 6 years. I had many utis and finally an antibody rejection which led to my failure again. So now I am on the list for another one. This time around I went on hemodialysis first and just recent switched to PD. I don't know which one I will like better, but I needed more free time and from what I know PD allows you to have more fee time.
Glad to know there are so many people out there having the same problems as me because sometimes I feel no one I know has any medical problems where they can connect with me.
Personal life- well I recently got married and am a teacher. I still work full time and while it can be stressful I still handle it.
If anyone has anything to share about PD I would greatly appreciate it. I'm still getting used to the tube and right now it's more of an annoyance than anything. Can't seem to wear my jeans without it irritating the tube  :rant;
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: January 25, 2016, 06:24:30 AM »

Welcome to the site Klopez15. 


        :welcomesign;


Take care, Cas

 I'm sure you'll find a lot of interesting PD post already in the PD section too
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
SooMK
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« Reply #2 on: January 25, 2016, 06:32:09 AM »

Welcome Karen!
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Vt Big Rig
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« Reply #3 on: January 25, 2016, 06:45:51 AM »

Welcome to the site Karen.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
kickingandscreaming
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« Reply #4 on: February 14, 2016, 03:31:46 AM »

Welcome Karen.  Sorry you have to be here.  But at least there is s "here."

I have been doing PD for about a month now--since training.  At first, it was a nightmare because my catheter had lots of issues and it turns out that I'm a fibrin producer so I need to use heparin in 2 of my daily exchanges..  Since that change, PD is working well (knock on wood). 

At first, it's a huge disruption of your normal life.  But then it settles into a routine that is not hard, but is a bit tedious.  My blood work has been excellent since starting PD, and that is a very good thing.  The diet is much more liberal than HD and that's good too. I don't like walking around feeling like I just ate too much Thanksgiving dinner, but I am experimenting with smaller volumes of dialysate and so far that is OK. That helps me feel less stuffed all the time. Now that I've got the process into a rhythm it doesn't feel nearly as intrusive.  It's just something I do every day.

Best of luck with it.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #5 on: February 14, 2016, 10:58:31 AM »


Hi Karen,

Glad you joined us here at IHD.  Sad that you had to.

One of the first things you will learn is to well support your cath to prevent movement of the hose at the site which causes irratation.

I had LOTS of problems my first 6 months.  I have a chest cath tunneled below the skin down to the abdomen.   Due to prior heart by-pass many years ago the nerves at the site surface are ? Damaged, it is totally numb.  In itself that isn't a bad thing except when the hose gets tugged on, I don't feel it and the site hole gets elongated.  Terribly irratated and slightly red weepy.  My PD Nurses didn't like that at all, constantly sticking those silver Q-tips in there cauterizing the area to stop the weeping.

Nurse Lou showed me how to 'curl' the hose as I am bandaging the site such that there is small 'circle' of hose laying just on top of the gauze pads.  As the tape goes on it holds that whole circle down.  No matter how much force is tugged on the hose it can NOT pull  on the hose at the site as all that contact area holds it very well.

Each time I change my dressing I change the direction of that hose from the site.  Kind of like the quarters on a clock face so it is never the same until 4 dressing changes.   This also uses up some length of hose so there isn't quite so much left to secure,  I have a couple of the PD Belts but prefer to use a piece of tape and inch behind the valve fitting.  This has been working well for me for three years now.

It takes a bit of practice.

Take Care,

Charlie B53
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Fabkiwi06
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« Reply #6 on: February 22, 2016, 02:32:19 PM »

Welcome Karen!

I'm also on PD and one of the first things my nurse recommended was to pick up a couple of those stretchy boob tube tops. You wear them around your middle to cover your access site and keep the tubes contained and concealed. Plus it helps cover the shirt/pants gap. :thumbup;
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
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