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LorinnPKD
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« on: June 22, 2016, 12:38:00 PM »


Hi everyone,

Just wanted to say hello.  I've been lurking for a while and I'm thankful for all the candid perspectives here on the site.

I have PKD and I'm currently at 6% at age 40 -- the PKD in my family seems to hit us pretty early. I'm taking binders for phosphorus but my potassium is super low.  I'm currently waiting for my fistula to heal up to start in-clinic hemo this summer.  I've been too exhausted and brainfoggy to work, but I'm hoping to return to work if the treatments allow, although I might need to find something a little less detail-oriented than what I was doing before.  There's no swelling or itchiness at this point, thankfully, and I've seemed to have gotten a grip on the nausea through very gentle and careful eating/intake, although going up a flight of stairs is often a herculean effort and I sleep all the time!

It's been so helpful for me to read the accounts here and know that with a condition where nothing's really normal, what I am feeling is normal!

My dad had PKD and handled it with his usual steady strength and perseverance.  He lived 25 years after reaching stage five and fortunately spent 16 of those years with a transplant.  I'm doing my best to follow his example and remain optimistic and grateful.

My thanks to all of you!
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kristina
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« Reply #1 on: June 22, 2016, 01:23:06 PM »

Hello LorinnPKD and welcome to IHD.
IHD is a good place to exchange information and find clever ways of how to survive best in ESRF.
Best wishes and welcome again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Charlie B53
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« Reply #2 on: June 22, 2016, 04:25:03 PM »


Welcome to IHD.  We are glad to have another Member, Just not so happy as to why.  Having witnesses your Father dealing with dialysis you are well familiar with what is going on in your life.  That helps.  So many haven't a clue when they begin.  Still, it is quite a shock when it comes your time.

Learning how, or what, to eat and drink is a major task.  I'm three years into PD and still don't know near enough.  Fortunately on PD I don't have as tight the restrictions placed on me as those on Hemo.  That helps me a lot as I grew up eating, and liking most everything that gets placed on the table.

The exhaustion and extended sleeping go with the territory.  Iron supplements help me.  But you need your Dr to check your labs before considering any supplements.  Also a good renal vitamin.  Generics have too much of some things that can be bad for us.

Keep reading, learn to use the Search.  There is loads of information already here.  Anything else just ask.  Many of us are regularly looking.  We all care.

Take Care,

Charlie B53
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: June 23, 2016, 06:59:38 AM »

Welcome to the site LorinnPKD

      :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
       still on waitinglist, still ok I think
DayaraLee
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« Reply #4 on: June 24, 2016, 01:43:23 PM »

Hello, LorinnPKD. It sounds like you have a lot of knowledge already from your dad's experience, and your attitude is very positive. It's good to know that despite the exhaustion and fogginess, you're doing well and nearly prepared to begin hemo this summer. This is a fabulous place to learn more, share your own info, vent, and receive support.   
:welcomesign; 
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
Michael Murphy
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« Reply #5 on: June 24, 2016, 03:28:46 PM »

It is possible to work while on dialysis.  I spent 30 months working full time while under going in center hemo. I was lucky to have a job that had strange work hours, 12 hour days three days a week.  I was a Solaris Administrator at a major goverment site.  I was 63 and realized I could retire on disability and get 70% of my salary and not have to commute in New Jersey. 
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kickingandscreaming
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« Reply #6 on: June 24, 2016, 06:19:17 PM »

Welcome to IHD, LorinnPKD.  Sorry you have to be here, but if you do have to be here this is a good place to be.  I hope your journey with this dialysis stuff is a smooth one.
K&S
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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
Vt Big Rig
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« Reply #7 on: June 27, 2016, 05:25:23 AM »

Welcome to the site. Sorry you had to look for it.
As others said it is very possible to work while on D.

Flexibility is certainly a requirement. My boss allowed me to come in at 7 am , leave at 3:30. I was hooked up by 4:30 and all done by about 9PM. He also gave me the needed time for clinics and multiple fistulagrams. I am doing home hemo.

I did this for about 15 months and then retired but not because of Dialysis  ...... I am just old!! :shy;
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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
PrimeTimer
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« Reply #8 on: June 27, 2016, 09:17:53 PM »

Welcome, LorinnPKD! There's a lot to read and learn here so make yourself comfortable. Hope your fistula will be ready soon and they tell you it's "beautiful" (code for "it's a good one"). You will probably feel better once you start dialysis, my husband did and altho he's A LOT older than you, he works full time so there's hope. Good luck!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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