Question for PKD Patients

balapandian

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Posts: 23

« on: April 13, 2012, 09:05:22 AM »

Hi,

For how many years were you urinating while on dialysis?
Did the urine output decreased over the years?

In addition to less fluid restriction, what are the other advantages of urinating with respect to dialysis? less dialysis
crash? no cramps?

My neph wants to remove the left pkd kidney because of repeated cyst infection, keeping the right kidney is left to
my choice. I want the right kidney to keep if it can produce urine, to aviod dialysis WASHOUT.

please help me in taking this decision.

Bala


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PKD
2010 Sep AV Fistula
2012 Jun Bilateral Nephrectomy
2012 Jun Hemo Dialysis

Cordelia

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Gender: Female

Posts: 2012

Re: Question for PKD Patients

« Reply #1 on: April 13, 2012, 09:57:28 AM »

Hi there Balapandian:

I have PKD. I have been on in center hemo doing dialysis coming up 2 years this summer.

I do urinate and the amount really has not changed. Except when I get off treatment I really only trickle urine that day. It's like the dialysis temporarily dried me out. Otherwise, frequency and amount hasn't changed. Apparently its better to be able to pee. It's like gold once you're on dialysis.

I have never crashed on the machine. Sometimes I cramp though if they get me down past my dry weight. I cramp more at home than I do at the center I dialyze at.

If you can preserve and keep your right kidney for now, I would recommend doing so. Since you still have urine output, that is a good thing if you are starting dialysis soon. I hope this helps


« Last Edit: April 13, 2012, 09:59:56 AM by Cordelia »	Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs, Mom to 3 kids to twin daughters (One that has PKD) and a high-functioning Autistic son

*kana*

Full Member

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Gender: Female

Posts: 360

Re: Question for PKD Patients

« Reply #2 on: April 16, 2012, 11:14:44 AM »

I have PKD and had a Bil Nephrectomy and it has relieved a lot of issues for me. If it were me, I wouldnt let them take just one out. Sure I miss peeing, but the risk of cancer with PKD is high and pain and infection was an issue for me.


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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014

balapandian

Newbie

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Posts: 23

Re: Question for PKD Patients

« Reply #3 on: April 19, 2012, 02:39:13 AM »

thanks cordelia and kana for the reply.

cordelia - pls drink water during dialysis to avoid dehydration

kana - it seems you have done both PD and HD and pls give me some suggestions

I have AV fistula is my hand, did Hemo dialysis once and hate it due to following reasons:
painful needle stick
hand pain for 2 days
much travel time to the hemo center
lying in the bed for more than 4 hours

I'm now more interested in PD because:
no needle stick, no pain, no travel

I'm planning for a single or double kidney removal, does this surgery affects the peritonial cavity?
does kidney transplant surgery affects PD?

Bala


	Logged

PKD
2010 Sep AV Fistula
2012 Jun Bilateral Nephrectomy
2012 Jun Hemo Dialysis

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