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Author Topic: Introduction from Jenny  (Read 3303 times)
jenb
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« on: September 15, 2017, 02:02:49 PM »
Hi,

I'm Jenny and so glad to have found this sight.  I have polycystic kidneys and my gfr ranges 14 - 15.  I have been "Inactive" on the kidney transplant list for about three years.  I still feel really good.  Probably going active soon.  I lost my husband last year so having people to talk to during this time will be very helpful to me.

If I have to do dialysis, I want to do pd as needles scare me (I think about a flu shot a week before I have it). 

Many questions to come.
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LoneHighway
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OTR Trucker, Off-Grid in New Mexico
« Reply #1 on: September 15, 2017, 02:55:43 PM »
Hi Jenny and welcome to IHD and the PKD club in particular. I'm with you there, also. Are you inactive on the list by your own choice? I've been stuck in "status 7" for over a year due to various issues. Hopefully you can find a donor and not have to wait long.
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kickingandscreaming
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« Reply #2 on: September 15, 2017, 05:22:32 PM »
Welcome, Jenny.  So sorry about your husband.  I lost mine too, but quite a few years ago.  I also do PD and hate the idea of needles.  So i'm with you there.  I hope you can get what you need from I Hate Dialysis.
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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 #3 on: September 16, 2017, 03:36:20 AM »
Hi Jenny,

Welcome to our IHD Family.

I did very well on PD for 3 1/2 years until I screwed up.  My mistake was doing my set-up in too much of a hurry.  Not taking the time to be as careful as we muxt be, I must have 'touched' one of the fittings with my skin.

Even after cleaning there is some bacteria present on our skin.  This is normal and expected and just fine, outside.  The problem is when even ONE of those buggers get INSIDE.  It grows, and it can KILL us.

Hours later, like less than 8, I was in the ER unable to breath as the abdominal pain was so great.  Days later I was released with a large supply of antibiotics to inject into ever bag of dialysis solution for the next month.  OK Fine.  Two weeks after finishing the antibiotics the infection returned.  Repeat the hospital stay, repeat the antibiotics this time for 6 weeks.  Two DAYS later the infection returned.  Repeat the hospital stay only this time Dr took out my PD Cath and inserted a Hemo Cath.

I've been good ever since.

Moral of this story?  SLOW DOWN!  Take your time EVERY time.  Make sure you are absolutely Religious about cleanliness and being careful with EVERY fitting during every set-up and treatment.

PD can be so easy, no needles, the process can be so gentle.  Using a Cycler you can go to bed and sleep through most the whole treatment.  You can have all day free to continue living a near normal life.

You will be fine.  Just pay attention during training.  Ask questions and post here for any clarification of anything you may not fully understand.

Take Care,

Charlie B53
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cassandra
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When all else fails run in circles, shout loudly
« Reply #4 on: September 16, 2017, 05:10:48 AM »
Welcome to the site Jenny

   :welcomesign;


Take care, Cas
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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
2020 start Gambro AK96

       still on waitinglist, still ok I think
OldKritter
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« Reply #5 on: September 16, 2017, 06:21:44 AM »
Welcome
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iolaire
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« Reply #6 on: September 16, 2017, 02:52:06 PM »
Welcome they say PD will help retain residual kidney function longer than HD.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
jenb
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« Reply #7 on: September 16, 2017, 03:13:29 PM »
Thank you all for the kind words and good information.

Lone Highway - the reason I'm inactive is my doctor and my choice since I am feeling so good, though, doc is now talking about a fistula  - he says as a safety net.  I'm not good with it as I really am only interested in doing pd.   Doctor at the transplant center said not to wait and get sick before dialysis so I guess it is sort of a balancing act.     What is  status 7?  I too wish you good luck on finding a kidney.
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Charlie B53
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« Reply #8 on: September 16, 2017, 06:25:19 PM »

One real advantage to getting a fistula done NOW, is if you do unexpectedly crash they can immediately begin Hemo.  THEN have the PD cath done.  You have the time doing Hemo while the PD cath heals and you go through training.  Once you begin PD stop going to the Hemo Clinic.

Sort of a very good back up plan.  That keeps you out of the hospital much longer, prevents an emergency Hemo cath that will later need to be pulled out.
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Michael Murphy
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« Reply #9 on: September 16, 2017, 06:49:48 PM »
Hi welcome, I am on Hemo by choice.  I had my fistula installed several years before I started dialysis.  I  picked hemo because I have a house in the Adirondacks by a big lake, and during the summer going for a swim on hot days is still something I look forward to.  On PD I would most be allowed in the lake.  As for the needles my approach is don't look.  Coming out they look fine going in they look like the holland tunnel.
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MooseMom
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« Reply #10 on: September 16, 2017, 07:26:54 PM »
Welcome to our wonderful community!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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