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Author Topic: How long?  (Read 4017 times)
murf
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« on: April 06, 2011, 04:01:32 PM »

I have been constantly told that PD is temporary and one day I will have to go back to hemo. As I love PD, I would like to find out from those of us on PD how long you have been on it. I have been on PD for one and a half years and like to know if anyone has been on it a long time.
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Started Hemodialysis Anzac Day 2005
Patiently waiting for a transplant
Started PD New Year 2010
Taken off transpalnt list, Jan 211
*kana*
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« Reply #1 on: April 06, 2011, 04:41:16 PM »

I've been told the same.  Oddly
My nephrologist told me about 4 mths ago that I would probably have another year on PD.  I've been on it for 2 1/2 years and my kt/v actually has gone up since my first test,so I don't know how he came up with that time frame.  Everyone is so different, but maybe 3-4 years is average, dont know. 
I've talked to others that have said PD could last 20 years but I havent met anyone yet that has been doing it that long. 
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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
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #2 on: April 06, 2011, 05:13:38 PM »

There are a number of factors involved. It depends on the strength of fluid you are using. All other things being equal weakest fluid = longer period peritonium effectivenes. Strongest fluid = shorter period peritoneum effectivenes. Also if you are unlucky enough to have frequent episodes of peritonitis then you need to consider the long term damage it can do to not only to the peritoneum but possible long term bowel complications. For some people it lasts years ( I know someone who has been doing CPD followed by APD for more than 10 years.
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Ken
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #3 on: April 06, 2011, 05:55:27 PM »

I've done PD for 3 and a half years.  No one has ever implied that I would have to do anything else, ever....  I do know I'm the longest running PD patient at my unit.  I love it and hope to get a transplant before anything else changes....
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Jie
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« Reply #4 on: April 06, 2011, 08:11:01 PM »

I heard that my former clinic had two PD patients who have been doing PD for 17 and 15 years. The clinic has about 80 patients. I did PD for close to two years and my transport status had changed from low average to low, so it is not as effective as at the beginning after two years.
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WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #5 on: April 07, 2011, 05:13:04 AM »

what is transport status? 
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Jie
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« Reply #6 on: April 07, 2011, 11:12:48 AM »

At the beginning of PD (usually 3-4 weeks), a PD patient will have a PET test to determine the transport status. Here is a quote about PET test:

"The PET test for PD patients is the peritoneal equilibration test. This test is to determine the quality of the peritoneal membrane, ie, whether it is high, medium or low in transporting molecules across it. This helps the Dr and PD nurse determine the best prescription for you. If a high transporter--the dwell times would be shorter and you would do well on a night cycler. If a low transporter--the dwell times would need to be longer to get the best clearances."


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WishIKnew
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« Reply #7 on: April 07, 2011, 02:20:08 PM »



"The PET test for PD patients is the peritoneal equilibration test. This test is to determine the quality of the peritoneal membrane, ie, whether it is high, medium or low in transporting molecules across it. This helps the Dr and PD nurse determine the best prescription for you. If a high transporter--the dwell times would be shorter and you would do well on a night cycler. If a low transporter--the dwell times would need to be longer to get the best clearances."


Oh, thanks.  I had that.  I do well on the cycler.  Do they/should I repeat the PET test to see if that's still the case after three and a half years on PD?
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Jie
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« Reply #8 on: April 07, 2011, 04:04:39 PM »

Oh, thanks.  I had that.  I do well on the cycler.  Do they/should I repeat the PET test to see if that's still the case after three and a half years on PD?

I think the PET test will not be repeated unless there is a problem. If you are doing well, it does not need any more PET test. When you are not doing well, they may want to find out what it is the problem and PET test may be repeated.
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WishIKnew
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« Reply #9 on: April 07, 2011, 04:13:03 PM »

My adequacy, which they do every three months, is always really good.  I guess I sould not worry.
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cath-hater
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« Reply #10 on: April 19, 2011, 08:48:10 AM »

I've been on dialysis for almost 9 years now (May will be 9 years).  My neph tells me that I could lead a full life til the end on PD.  I've already had one failed transplant at UCLA last year.  I have FSGS which is very bad, so the new kidney never had a chance, but life goes on.
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Currently on PD using Fresenius.
PD for 9 years.
1 failed transplant in 2010 due to FSGS - donor kidney still inside and still producing urine (weird), but spilling alot of protein.
Off all immunosuppressants.
Currently not active on any list (by choice).
*kana*
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« Reply #11 on: May 03, 2011, 06:31:05 PM »

My new Neph told me that most PD patients are on it for 3-4 years.  I guess 20 years is far from the norm. 
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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
lioness
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« Reply #12 on: May 05, 2011, 10:11:51 AM »

I was told PD may be done an average of about 7 years. I'm with it for two years now. My first PET test showed that I'm a medium transporter and that hasn't changed in the meantime. Here in Germany they do a PET test every 6 month. My next one is on May 12th, hopefully everything is still working ok. But I'm confident ...
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Lillupie
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« Reply #13 on: May 06, 2011, 05:57:13 AM »

I thought they usually did that once a year   Your unit doest make you take the test every year? Odd



"The PET test for PD patients is the peritoneal equilibration test. This test is to determine the quality of the peritoneal membrane, ie, whether it is high, medium or low in transporting molecules across it. This helps the Dr and PD nurse determine the best prescription for you. If a high transporter--the dwell times would be shorter and you would do well on a night cycler. If a low transporter--the dwell times would need to be longer to get the best clearances."


Oh, thanks.  I had that.  I do well on the cycler.  Do they/should I repeat the PET test to see if that's still the case after three and a half years on PD?
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
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billybags
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« Reply #14 on: May 06, 2011, 05:58:51 AM »

Our unit in the UK does it every 6 months.
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Lillupie
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« Reply #15 on: May 06, 2011, 06:15:08 AM »

Thank God Im not in the UK! lol once a year is bad enough
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
HouseOfDialysis
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« Reply #16 on: May 07, 2011, 05:13:34 PM »

My unit does it every six months, too.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
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