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shorty590000
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« on: November 13, 2011, 12:15:23 PM »

Hi there.. My name Is Michelle.. I live in Greenville COunty, SC... and I went into full renal failure back in May due to toxic shock... i have been on dialysis every since coming out of the hospital a month later... and just recently they estimated my kidney function to be 18-20 % so they have pulled me off dialysis.. It has been 3 weeks now.. they are doing blood work weekly.. I just feel so tired alll the time.. and depression is relaly starting to kick in.. Has anyone else been through this where you are trying to come off of dialysis? if so, how did it go?
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Michelle
Rerun
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« Reply #1 on: November 13, 2011, 05:03:40 PM »

Hi Shorty and welcome to IHD.  I'm so glad you found us.  Not too many get your opportunity.  I'm saying to run and never look back.  You may be tired due to being so sick in the spring.  Start slow, but walk and exercise to strengthen yourself back.  Drink a glass of milk for me since I love it and can't have it. 

I know one guy who really hated dialysis so he quit, but is still doing OK.  He must have been close to 18% function to be doing so well.

Hang in there.

Rerun, Moderator         :welcomesign;
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willowtreewren
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My two beautifull granddaughters

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« Reply #2 on: November 13, 2011, 06:08:05 PM »

HI, Michelle!

You are indeed fortunate to be able to come off dialysis. I agree with Rerun. Slowly build up your stamina through exercise. Eat carefully and hopefully you can stay off dialysis.

Welcome to IHD!

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. :)
Cordelia
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« Reply #3 on: November 14, 2011, 06:57:48 AM »

Hi Michelle! Welcome to IHD!       :welcomesign;       :grouphug;
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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
Rerun
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Going through life tied to a chair!

« Reply #4 on: November 15, 2011, 03:45:00 AM »

 :bump;
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looneytunes
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Wishin' I was Fishin'

« Reply #5 on: November 16, 2011, 06:28:42 PM »

Hi Shorty and I also welcome you to IHD!   :welcomesign;   It sounds like you are one of the few who may be able to come off dialysis.  Let us know how you are doing. 
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"The key to being patient is having something to do in the meantime" AU
monrein
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Might as well smile

« Reply #6 on: November 17, 2011, 07:44:58 AM »

 :welcomesign; to IHD.  I'm very glad that you are off of dialysis but no wonder you're tired.  20% function is still quite low in absolute terms and will most definitely affect your energy levels.  You are fortunate to have "acute" (meaning temporary) kidney failure rather than "chronic" (no returning really) and I hope that your function will continue to return to higher levels so that you will feel more like your former self.  Depression is also no surprise given what you've been through and I hope you will find this forum as helpful to you as so many of us have.   :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Ang
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« Reply #7 on: November 24, 2011, 11:56:50 PM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
Traveller1947
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« Reply #8 on: November 27, 2011, 02:59:34 AM »

Hi shorty590000 and welcome!  Don't have much to add to what monrein told you.  She just about said everything I would have.  Rerun has it right too.  Walking and other light exercise will build some strength back and might help your depression too.  Life is a struggle, isn't it?  But so worth the journey...
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shorty590000
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« Reply #9 on: November 27, 2011, 10:00:10 AM »

Thank you so much everyone for the input...I just can't find the info. I am looking for anywhere else but I am reading through threads and learning so much.... I am still off dialysis... they checked my blood for 3 weeks and function bounced from 18 to 20% still.... the thing is the doc told me they don't believe I will regain more than 20% function, ever, due to scar tissue in my kidneys.. i went into septic shock due to fungus that got in my blood.. so I had mutliple organ failure... I am just trying to grasp that idea of that much scar tissue being there that quickly... still looking for answers.. but thank you so much for your input...
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Michelle
shorty590000
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« Reply #10 on: December 20, 2011, 09:07:15 PM »

Still off dialysis.... kidney function is still between 18 and 20%....battling low hemloglobin now.. around 8... taking procrit shots... went to neph couple weeks ago and asked him bout this scar tissue thing.. he said, yes, it was his belief that based on amt of time i was in shock and in ICU.. and dying really, blood clots were thrown to the kidneys and therefore scar tissue developed.. does that make any sense? help me to understand. somebody please...so the doc does not believe I will ever regain more function that I have now.. so is this chronic or acute.. i would think chronic.. but just at that point where i am off dialysis at the time... dialysis made me so sick... bp bottoming out.. migraines,, every single time i had a treatment. the whole day was shot.. i dread the day I have to go back on... i will search out other methods than in center hemo. for sure about that..
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Michelle
Ang
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« Reply #11 on: December 26, 2011, 10:32:26 PM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
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