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jazzthaaagawjus
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« on: June 01, 2014, 10:22:02 PM »
Hi everyone

thanks for letting me join. My names jazz and im 18 years old, ive recently been diagnosed with polycystic kidneys with countless amounts of cysts of each kidney,  my gfr is 40 and I thought I'd join up by reading about what I have to expect in the near future.

Thanks!
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Darthvadar
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« Reply #1 on: June 02, 2014, 01:47:37 AM »
Hello Jazz....

 :welcomesign; to IHD.... Glad to have you....

Please feel free to ask for any information you need... We're a friendly bunch, and are always happy to share our experiences of dialysis... The good, the bad, and the ugly...

Hope to see you visiting and posting often....

Darth, Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
cassandra
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« Reply #2 on: June 02, 2014, 02:51:59 AM »
Welcome to the site Jazz

    : :welcomesign;


I hope D is still a long way of yet.

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
jazzthaaagawjus
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« Reply #3 on: June 02, 2014, 07:09:07 AM »
Hi to both of you, thank you for making me feel welcome! I hope the dialysis will be a very long time away also! Just wanted to prepare myself for what might happen, also my dad has polycystic kidneys too and will be starting dialysis soon so its nice to know there's lots of advice here from everyone:)
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Joe
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« Reply #4 on: June 02, 2014, 10:57:42 AM »
Welcome to the site Jazz. I think you will find a lot of background about this disease here. Happy reading.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
goofball
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« Reply #5 on: June 02, 2014, 11:56:40 AM »
Hi jazz,

Your kidney function might remain stable with just a gentle downward slope for years before you notice anything.  Make sure to take your BP medication if you have some prescribed.  Enjoy the many years of health that lie ahead!
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APKD - 47yr-old

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jazzthaaagawjus
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« Reply #6 on: June 02, 2014, 10:14:17 PM »
Hi goofball

I hope so too, my doctor hasn't really given me much information about this, so I'm just a bit curious, as you have polycystic kidney disease also what were the first signs that you knew you needed to go on dialysis? Like what symptoms to look out for?

thanks!
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Bambino_Bear
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« Reply #7 on: June 02, 2014, 11:55:14 PM »
 :welcomesign; Jazz!
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
Simon Dog
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« Reply #8 on: June 03, 2014, 01:12:04 PM »
My signs when I first went on PD were all in lab tests, but when I had my residual drop off and PD wasn't enough, the main symptom was that my stomach was on a hair trigger.  I'd be walking the dogs, and pause to puke; I kept a bag in my desk "just in case" (and used it); and I remember opening the door at a stoplight and heaving onto the pavement.  By the time I was in the hospital, I could not keep food down.  My doc transitioned me to hemo and told me "if your symptoms are uremia, your symptoms will reverse quickly".  He was right - I have had no trouble keeping food down since the transition.
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goofball
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« Reply #9 on: June 04, 2014, 05:49:40 PM »
I'm not on dialysis yet, I have about a year to go.  I hate it in advance, LOL.
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APKD - 47yr-old

Renal Diet Chef
jazzthaaagawjus
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« Reply #10 on: June 04, 2014, 10:19:00 PM »
Quote from: Simon Dog on June 03, 2014, 01:12:04 PM
My signs when I first went on PD were all in lab tests, but when I had my residual drop off and PD wasn't enough, the main symptom was that my stomach was on a hair trigger.  I'd be walking the dogs, and pause to puke; I kept a bag in my desk "just in case" (and used it); and I remember opening the door at a stoplight and heaving onto the pavement.  By the time I was in the hospital, I could not keep food down.  My doc transitioned me to hemo and told me "if your symptoms are uremia, your symptoms will reverse quickly".  He was right - I have had no trouble keeping food down since the transition.

Hi simon dog thanks for sharing that with me I never thought it would have caused sickness all the time I'll have to look out for that nearer the time that sounds awful!

& goofball, me too! I hate it in advance also!
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Ninanna
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« Reply #11 on: June 05, 2014, 07:00:11 AM »
Welcome Jazz!  I'm glad you are doing your research and that you found us. I look forward getting to know you better. :)
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Poppylicious
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« Reply #12 on: June 08, 2014, 07:20:01 AM »
Hello Jazz, and a big  :welcomesign; to the ihd forums! We're a supportive and lovely bunch, mostly!

 ;D

Poppylicious, Moderator
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Jean
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« Reply #13 on: June 08, 2014, 02:00:58 PM »
 there are lots of younger folks like you in this forum. Hopefully you will hear from them and soon. You have a pretty good amount of time before you have to start, hopefully. I was at GFR of 29 in 2007 and am now only at 20.  :welcomesign;  to IHD
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One day at a time, thats all I can do.
goofball
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« Reply #14 on: June 09, 2014, 06:31:07 PM »


This is a chart of my renal function decline and, in red and orange, predictions.  I estimate I will need to be readied for dialysis Spring 2015, to start in the fall.
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APKD - 47yr-old

Renal Diet Chef
jazzthaaagawjus
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« Reply #15 on: June 18, 2014, 07:38:32 AM »
Hi everyone!  Thanks to all for being so welcoming!

& goofball: This chart is really interesting! It really gives a good view of exactly how much it goes down after a certain amount of time,  I'm really glad you posted that its really interesting

Thank you!
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