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Veedubkid
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« on: October 28, 2013, 09:02:16 AM »
Hello there guys and gals, my name is Jay Mason and I have been lurking here for awhile and on PD since August 2013.
I am originally from New Jersey but find myself now in sunny Florida. I have a hereditary kidney disease (Medullary cystic kidney disease type 2 is an uncommon autosomal dominant condition)
that has afflicted my mother (she had a transplant in 2005) and pretty much all of her first cousins. They are doing a study at Wake Forrest on it.
As for my PD situation I was doing 4x 2500 a day now they have me up to 5x a day which is ridiculous. I am waiting for Baxter to send me 3000ml bags so I can go back to 4x a day. Please
feel free to question or comment to me about anything. Thank you all for reading. Jay Mason K.

That is my story and I am sticking with it!
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MooseMom
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« Reply #1 on: October 28, 2013, 09:05:12 AM »
So, you're going to be the subject of a medical study?  That makes you famous!  Yay!

I'm glad you joined and hope you find this site supportive and informative.  Feel free to pitch in and offer whatever wisdom you've gained thanks to PKD (a rare and special kind, I see) and dialysis.
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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."
Shaks24
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« Reply #2 on: October 28, 2013, 11:06:51 AM »
Welcome to IHD Jay. I started PD September. Doing 4 manuals of 2000 1.5. Started training on cycler today. Glad you made your way here.   :welcomesign;
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Desert Dancer
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« Reply #3 on: October 28, 2013, 12:33:47 PM »
Hi, Jay -

Dr. Anthony Bleyer at Wake Forest, yes?  ;D

Our family has been enrolled in the same study since the early 2000s but at that time they were researching Familial Juvenile Hyperurecemic Nephropathy (FJHN). They have since discovered that FJHN and MCKDII are genetically the same disease, though ours features early-onset gout (age 9 or 10).

Welcome!
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
Joe
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« Reply #4 on: October 28, 2013, 12:40:39 PM »
Hi Jay, and welcome. Have you considered going over to CCPD? I let my cycler take me through 5x2000 while I sleep, it works pretty well.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
Veedubkid
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« Reply #5 on: November 06, 2013, 10:32:06 AM »
Well dialysis family, since last I posted, I just got out of the hospital. :( Later that day that I posted my greeting I was getting really bad stomach pains. It wound up getting so bad I had to call an ambulance. Turns out I had a strangulated hernia and had to have emergency surgery. I am now on HemoDialysis until my belly recovers and I can go back to PD. What a week. I am just glad I am alive. Surgeon said one more day and gangrene would had set in and then I really would had been in trouble. I now have a heart catheter and HATE IT! Why can't anything just be simple????
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Shaks24
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« Reply #6 on: November 06, 2013, 11:36:54 AM »
Sorry to hear this. Hope you get to full recovery real soon. Take care of yourself Jay.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Rerun
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Going through life tied to a chair!
« Reply #7 on: November 06, 2013, 01:01:34 PM »
Oh, NO!  Glad you are feeling better.  Thank you for joining.  At least with a cath there are no needles.  So glad you found us.

Come post often.

Rerun, Moderator     :welcomesign;
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