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Author Topic: Something AMAZING is happening!  (Read 6821 times)
Adam_W
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Me with Baron von Fresenius
« on: November 13, 2009, 04:09:17 PM »
During the last month or so, I have noticed I seem to be producing a little bit more urine. Not a whole lot more, but enough to notice. This last week however, I've started peeing like a racehorse! I've been peeing just as much as I did before I developed kidney problems. On top of that, due to various reasons, I've missed a lot more dialysis the last few weeks than I usually do, and when I drew my latest labs last week, they were not any worse, like you would think they would be after missing a lot of dialysis. My phosphorous had in fact went DOWN! My nurses are going to have me do a 24 hour urine clearance test next week to see just how much my kidney is doing on it's own. My nurse is fairly optimistic that I might be able to lower the amount of dialysis I do, or perhaps even come off of it completely for a while. Physically, I feel just as good as I've felt when I wasn't missing a single day of dialysis (sometimes even giving myself 7 days instead of 6). I know that if I can reduce or come off of dialysis, it will only be temporary, but I'll take all I can get. I'll try to keep you all updated on what I find out.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #1 on: November 13, 2009, 04:38:18 PM »
Wow how amazing.  Let us know how you get on.  Yay.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
pelagia
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« Reply #2 on: November 13, 2009, 04:45:15 PM »
This is great Adam.  :thumbup;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
willowtreewren
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My two beautifull granddaughters

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« Reply #3 on: November 13, 2009, 06:53:30 PM »
OMG, Adam!

That IS amazing! Wonderful, in fact! Fingers crossed for you that you CAN get some time off.

 :cheer: :cheer: :cheer:

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. :)
Jean
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« Reply #4 on: November 13, 2009, 07:10:06 PM »
That truly is amazing Adam. Best of luck, I hope it just keeps getting better and better for you.  :bandance;
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One day at a time, thats all I can do.
Romona
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« Reply #5 on: November 13, 2009, 07:33:16 PM »
Wow, amazing.  :clap;
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cariad
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« Reply #6 on: November 13, 2009, 07:46:07 PM »
Congratulations, Adam, and best of luck for it to keep on this way.

Such great news - I'm so happy for you!

 :cheer:  :cheer:  :cheer:  :cheer:  :cheer:
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Chris
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« Reply #7 on: November 13, 2009, 10:29:06 PM »
Hey adam, hope that does happen and as you said even though it may be temporary, ENJOY it while you can to the fullest.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Mimi
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For any who do not like me I use - prayer.
« Reply #8 on: November 13, 2009, 10:42:24 PM »
Wonderful Adam!!!  My Doc says that there are some people that are able to improve and come off D and then go back on when the numbers fall.
I hope this is true for U.
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
kristina
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« Reply #9 on: November 14, 2009, 01:18:37 AM »

This is amazing!

Do you know/guesstimate what "makes" your kidneys "pick up" again?

Have you changed anything? Diet? Life-style? Anything particular?

Is there a medical explanation?

Whatever it is, I wish you very very very good luck

and I hope you have a chance to "relax" from dialysis.

Best wishes from Kristina.  :bestwishes;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
RichardMEL
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« Reply #10 on: November 14, 2009, 06:49:17 AM »
how exciting! I'd love to wake up and start peeing heaps!!!

I hope this isn't a false positive kind of thing and you can lower your dialysis time.... let us know... sounds great!!! :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Poppylicious
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« Reply #11 on: November 14, 2009, 07:35:31 AM »
That's fabulous!  ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
ceejster
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« Reply #12 on: November 14, 2009, 12:00:18 PM »
Awesome!!!  :)
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RightSide
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« Reply #13 on: November 14, 2009, 08:27:44 PM »
That's fantastic news.  I'm really happy for you.

Spontaneous improvement of Stage 5 chronic kidney disease is rare. But it's not totally unheard of.  I'm glad it's happening to somebody on IHD.
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #14 on: February 08, 2010, 06:16:33 PM »
Hey Adam - any update?
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
jbeany
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« Reply #15 on: February 08, 2010, 07:55:39 PM »
 :clap; :clap; :clap;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Zog
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« Reply #16 on: February 08, 2010, 08:35:59 PM »
 :2thumbsup;  COOL!
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #17 on: February 08, 2010, 09:13:05 PM »
 ???    I know I missed the message
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
sullidog
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« Reply #18 on: February 09, 2010, 04:32:07 PM »
Any updates?
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
peleroja
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« Reply #19 on: February 10, 2010, 11:03:18 AM »
So, I guess the obvious question now is if you're peeing like a racehorse, are you built like a racehorse?  Sorry, someone had to say it  :rofl;  Sounds wonderful, Adam; less dialysis or a break from dialysis completely would be nice.  Hope you keep getting better.
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Zog
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« Reply #20 on: February 10, 2010, 11:19:58 AM »
We should all look at the date of the original post... I know I should have! It appears that Hanify was trying to get an update from Adam.  Adam is probably out drinking a Coke, happily peeing away and has forgot all about us.  Oh well, worse things have happened. 

I can't blame him!  I wouldn't be here if it weren't for my wife.  When was the last time any of us has gone on cysticfibrosis.com, burgada.org or some other niche health forum to chit chat?  I never have... and hope I never have too!
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
nycrtst85
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« Reply #21 on: February 14, 2010, 06:48:24 PM »
That is amazing it is possible that your kidneys regenerated to the point of being almost normal thats beautiful.Anything you did differently that you noticed when your condition improved.???God Blessed You and keep the gang updated.
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Rogelio Ronco
JennyGiggle
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« Reply #22 on: February 15, 2010, 04:49:14 AM »
I know its a few months old, but reading this has brightened my day. To hear that someone has suddenly had a turn around is so lovely to read! Gives me hope! I hope it continues to go good. Would love to read an update!

Jenny
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