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Xavierleander
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« on: March 01, 2017, 10:25:57 PM »

Hi.
My name is Robin , I am 63 year old bloke living in New Zealand.

I had a abdominal aortic aneurysm AAA repaired (saved my life  :2thumbsup;) but, lost left kidney in the process and the right kidney got muntered. eGFR 24 currently. Usual problems with bowels and nerve damage. Nevertheless, really glad to be alive.

I am also allergic/intolerant to antibiotics which does raise eyebrows and causes a lot of hmmmmmm's.

Doctors now muttering about dialysis in the not too distant future, but getting a straight answer is challenging. So, I am educating my self, please be patient.
I need to educate myself and discover real options.

Thanking you for you forbearance.
Robin
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: March 02, 2017, 02:24:32 AM »

Welcome to the site Robin

   :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
Michael Murphy
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« Reply #2 on: March 06, 2017, 12:52:23 AM »

Don't fall in the numbers trap, and don't fall in the wait to be hospitalized trap.  Every one reacts differently to the effects of CKD.  I was told every month for two years to start, I felt good so why start, then I  had my first symptom and I started. The end result was 2 glorious years with out dialysis.  The second warning is caused by the it's not bad enough yet syndrome, there people wait till it's a emergency and start dialysis in the hospital. Good Luck glad you joined and I hope you get many dialysis free years.
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Charlie B53
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« Reply #3 on: March 06, 2017, 05:02:41 AM »

Hi Robin,

Welcome to IHD.  We are always glad to Welcome another Member to our Family.  It sucks that you've had to find us, but you have come to the right place to find answers to many of your questions from Brothers and Sisters that have been, and are living the same Hell that you are approaching.  For some, it is a form of Hell, having many bad experiences until they have found the means to adapt to the life on Dialysis.  Many, like you, have a bit of warnings, a little more time to prepare for the rigors of the Dialysis Life.  Some of those with warning have changed the way they live just a bit, making changes in their diet to reduce the workload on their kidneys, greatly extending their time before needing to start Dialysis.  You have a lot to learn in a very short time for this to be an effective method to forestall the big D.  Google 'Renal Diet', you will find pages and pages of information to learn of the amounts of potassium and phosphorus in foods.  Reducing your intake of these two elements can greatly reduce the rate of kidney function loss.   Talk with your Dr about whether taking phosphorus Binders at this stage may also help reduce the kidney work load.

I myself started way early using PD.  While I wasn't sick yet from kidney failure, I was still about 20% function, I was often hospitalized with nasty terrible leg infections from the daily leakage.  Legs swollen so fat and tight the water just leaked out of them, huge sores that took forever to heal, if they didn't get infected first.   Dialysis stopped all that within the first week.

Come back and post often, we are always near.  Ask anything, rant about the things that bother you, sometimes it helps to vent.

Take Care,

Charlie B53
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OldKritter
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« Reply #4 on: March 06, 2017, 05:09:32 AM »

Welcome Robin

This is a good group to assist you in your quest for knowledge
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iolaire
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« Reply #5 on: March 06, 2017, 05:45:35 AM »

Welcome to the forum.  From what I've read New Zealand really pushes home dialysis so as you do your research think about your choices from that standpoint.  Additionally from what I've ready PD (peritoneal dialysis) has a good risk of serious infections, something to keep in mind if you don't want antibiotics.  I don't read about much infection from HD (hemodialysis) so if you have a chance get your fistula put in prior to starting dialysis so that's ready when you need it.
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I travel with my wife as a hobby and am on Dialysis, recent trips include Brussels.  We return to South Africa (Cape Town) in November 2016. I've also visited a few other US DaVita centers and have had good experiences.

I still owe a write-up for Montreal for October 2016.
LorinnPKD
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« Reply #6 on: March 06, 2017, 08:32:04 AM »

Welcome, Robin!
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DayaraLee
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« Reply #7 on: March 06, 2017, 01:31:14 PM »

Welcome to the site, Robin! Best place I've found to ask questions, read about others' experiences (unbelievable knowledge bank here!), and get support from people who know what it's like. Glad you found IHD!
 :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
Xavierleander
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« Reply #8 on: March 06, 2017, 09:52:55 PM »

Thank you for the generous welcome folks.

My list of questions for the renal consultant grows daily and my preventative maintenance efforts redouble.

Kia kaha.

Robin
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PrimeTimer
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« Reply #9 on: March 06, 2017, 10:18:48 PM »

Welcome to ihd! Lots of people here who have been in your shoes trying to weigh out their options. Speak up and ask, they love to answer. Some prefer doing PD at home because it's done in the privacy of your own home on your own time by yourself or carepartner, same thing with home hemo, you basically call your own shots while some go to a center for their dialysis and where they can do a little socializing with staff and fellow chair mates. Just depends on your lifestyle. You won't know unless you ask...
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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.
willowtreewren
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My two beautifull granddaughters

WWW
« Reply #10 on: May 25, 2017, 04:08:16 PM »

Kia ora, Robin.

You will get lots of answers here.

You live in a stunningly beautiful country.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Michelle2016
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« Reply #11 on: May 25, 2017, 06:43:31 PM »

As other said, the numbers can be changed or improved. You are still in recover. Try your best. Cut salt, eat healthy food., relax. The kidney may last many  years.  The creatinine level is the key number to be considered. It can be fluctuate before settling down. Sometimes it takes two years to be settled down.

Best wishes.
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Charlie B53
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« Reply #12 on: May 25, 2017, 07:23:31 PM »


Like Michelle said, eating healthy is critical.  Look into the Renal Diet.  Reducing the work load on your existing kidney function can greatly extent it's effects.

Why I didn't find that out years ago I'll never know.
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Michael Murphy
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« Reply #13 on: May 25, 2017, 09:15:51 PM »

The most important person to find at this point is a good renal dietician one who knows what a predialysis diet should be.  The two pre and post dialysis are quite different.  So make sure the dietician is giving pre advise.  At your GFR it's possible to add years to your pre dialysis time.  Good Luck
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smartcookie
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LMSW

« Reply #14 on: May 26, 2017, 09:00:01 AM »

 :welcomesign;  Hi, Xavier!!  I love that this in an international site!  I pray that you can avoid dialysis for as long as possible, but if you have to be on dialysis, this is the place to be!!  I look forward to reading your posts!  I would think about what Iolaire said about infection with PD when thinking about the type of dialysis you want to do.  That is some very good advice!
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
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