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Author Topic: Introduction from South Louisiana  (Read 241 times)
charlesc
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« on: December 31, 2018, 04:42:49 PM »

I have lived with one kidney since I was 6 yrs old, it ceased functioning due to congenital defect. It was removed due to infection, when I was 20.
Been taking care of it my whole life!. At age 60 Creatinin started to climb above 1.5 under constant care of nephrologist since. Eventually on transplant list in 2013. Entered Stage 5 Oct 2011 to me that is a LONG TIME for stage 5 but I accept it with pleasure! My Creatinine this month is 5 but I usually run 4.2 or so to 4,8 been at 5 several times over the years. I have a full Renal Panel and CBC every month so that I can quickly adjust my DIET and meds. I cannot stress enough how important diet is. When my neph. told me to go on it he referred to it as the "T" diet for terrible and at first glance it is but and a big but it is NOT terrible as my wife and I have learned to live with it and it has worked. I stay within my numbers every month----those that I have control over!
Over time things change, it was only potassium that I was avoiding now added is phosphorus goes with the  territory.
 About the potassium I limit my intake to 2,000mg per day.
I have not been on dialysis but have made prep. for it, had a fistula done in left arm 5 yrs. ago and plumbed my bedroom for PD. Thank God I have not had to use either.
Feb. of 2015 a lesion found on my kidney and the transplant dept. at Ochsner Hospital in New Orleans wanted to remove the kidney as the lesion was inoperable. I said NO, that i have been taking care of this kidney my whole life and doubled down the past 12 yrs. and was not going on dialysis on the "chance" that it might be cancer. I saw an oncologist and he agreed with me and has been checking it by ultra sound every 6 months since and NO sign of cancer. Transplant Dept. will not accept that so I have been on HOLD on transplant since that is they will not transplant me as long as I have my  kidney. Even at this low of function I am doing fine, get exhausted very quickly such as when doing some yard work and such but other than that OK-----hey, my wife and I lead a Senior Exercise Class 3 x per week.
Please forgive the long winded intro but I hope that my condition will put some at ease. I know how concerned I was when my Creatinine was 1.7 and now it is 5 and I am OK, there is HOPE.  Did I mention DIET and Meds? Just do it. I will not bore you with diet hints but get in touch with me if you wish.

CCC
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iolaire
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« Reply #1 on: December 31, 2018, 05:14:11 PM »

Welcome to the group!
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Michael Murphy
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« Reply #2 on: January 01, 2019, 03:39:23 AM »

Welcome to the group, you will be a fine example of dealing with the diagnosis without panicking.  Too many reach a certain grr and instantly begin to panic.  Itís not the numbers but how you feel that counts.  I changed diet and got two more years dialysis free, my diet changes were not as drastic as yours, now I kind of wish they had been.
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Michelle2016
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« Reply #3 on: January 01, 2019, 07:26:53 AM »

A amazing experience. Kudos to you. You know what youíre doing.  Wish you the best in 2019!
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cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: January 01, 2019, 10:22:11 AM »

Welcome to the site CCC


    :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
SooMK
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« Reply #5 on: January 01, 2019, 12:09:49 PM »

Welcome!
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #6 on: January 10, 2019, 02:04:59 PM »

 :welcomesign;

Hello charlesc. Welcome to the site.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
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