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Author Topic: I'm off dialysis!!!  (Read 41295 times)
Maker
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« on: January 16, 2010, 08:43:46 AM »
Yesterday I got the news that my (and many others) prayers have been answered - I am stopping dialysis  :bandance;

I know its so unbelievable, but many of you have seen my previous posts about my improving numbers (GFR, BUN, Creatinine) and my Doctors not listening to me.  In fact, when I got a horrible infection in my permacath I begged them to pull the cath and not give me another one, and just monitor my labs and see how I do.  My Neph and his partner told me straight up that they would NEVER let me get off dialysis no matter what.  Keep in mind...one of these Dr.s owns the facility and right now there are quite a few empty chairs  >:(

I went for transplant evaluation on Thursday, and the transplant center did labs.  I got a call Fri morning from the transplant coordinator and she said there is no way they would transplant a patient with a creatinine of 1.6 and a BUN of 1, and that there is no way any nephrologist could justify keeping me on dialysis.  To which I responded, thanks, please call and tell my neph that!!!

Well a few hours later I got a call that yesterday would be my last treatment, and in 2 weeks I will do a 24 hour urine to see how I'm doing.  I cried, and cried, and then called everyone who has been praying so much for me. 

I knew it was crazy to keep praying for this when it seemed impossible and the Doctors said it would never happen...but it just goes to show, never underestimate God!  He does work miracles  :2thumbsup;

So...now I have the huge challenge of keeping myself healthy and off dialysis for good. It's a bit scary, but I have faith I can do it.  That being said, I asked my dialysis nurses and techs what advice they could give me.  The biggest thing they said was drink drink drink.  Stay super hydrated all the time!  I never retain fluid and pee a lot still. 

And by the way, for anyone else out there who may be in a similar situation, most recently I have greatly increased my hydration and my protein.  Those are the only things I can think of that I might have changed in my lifestyle that helped with the improvement.

Does anyone else out there have any advice?  Maybe some of you who are still pre-dialysis and are managing to keep things under control?

Thanks everyone for your support through all this  :cuddle;
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- Lori

33 years old
Diagnosed February 2007
Started In-Center Hemo October 2009
Trying to qualify for a living donor transplant

"I can do all things through Christ who strengthens me"  Philippians 4:13
dwcrawford
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« Reply #1 on: January 16, 2010, 09:06:08 AM »
Absolultely no advice but a resounding congratulations.  And a lot of quesions about  my own treatments.

Why have I never been sick, more than tired from the bloodletting and sick of dialysis?  Why are my labs good except low phos, pot and prot (which wouldn't be low at all if you weren't on dialysis?  Hummm, sure is a lot easier for my Neph who are primary providers of patients to show up (one of the four) once a week and say hi/bye to 100  or so patients than to have so many scheduled at the office?

Oh your situation if so inspiring and yet thought provoking to a lot of us.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
kellyt
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« Reply #2 on: January 16, 2010, 09:13:12 AM »
A big congratulations!  And a big Good Luck to staying off dialysis.  Keep us posted of your progress, labs, diet, etc.  This is very interesting and inspiring!   :2thumbsup;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Maker
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« Reply #3 on: January 16, 2010, 09:19:16 AM »
Quote from: dwcrawford on January 16, 2010, 09:06:08 AM
Absolultely no advice but a resounding congratulations.  And a lot of quesions about  my own treatments.

Why have I never been sick, more than tired from the bloodletting and sick of dialysis?  Why are my labs good except low phos, pot and prot (which wouldn't be low at all if you weren't on dialysis?  Hummm, sure is a lot easier for my Neph who are primary providers of patients to show up (one of the four) once a week and say hi/bye to 100  or so patients than to have so many scheduled at the office?

Oh your situation if so inspiring and yet thought provoking to a lot of us.

Hi DW,

I had low phosphorus and potassium too!  My protein was low but that's why I have really really increased it and its normal now.  I am off my binders now too.  Its a big indication that my kidneys are doing what they are supposed to when phosphorus and potassium are actually low (not building up in the bloodstream).  I'm curious about your BUN/Creatinine/GFR? 

I talked yesterday to a friend at my unit before I left and she said she really doesn't pay attention to her lab numbers.  I think my situation is the perfect example of why we all need to be our own advocates and be as educated as we can instead of blindly trusting the Doctors - I know you are with me on this DW  ;)

Best of luck to you!! 
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- Lori

33 years old
Diagnosed February 2007
Started In-Center Hemo October 2009
Trying to qualify for a living donor transplant

"I can do all things through Christ who strengthens me"  Philippians 4:13
cariad
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« Reply #4 on: January 16, 2010, 10:29:27 AM »
Absolutely phenomenal, Lori! I'm so happy for you. :cheer:

A creat of 1.6? I honestly cannot remember the last time mine was that low. I know you probably just want the heck out of that place, but it sounds to me like your nephrologist should be investigated for fraud. I wish I had advice, but all I can think of is to continue to monitor your labs, and switch neprhologists.

Here's hoping that you've seen the last of dialysis.  :yahoo;
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Bill Peckham
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« Reply #5 on: January 16, 2010, 10:36:53 AM »
I kinda feel like someone ought to be punched. Do you have brothers?

I would want a very detailed explanation from the neph about what he did wrong and what he is doing to make sure it isn't happening to others.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
jbeany
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« Reply #6 on: January 16, 2010, 10:47:34 AM »
 :cheer:

I hope you never need it again! 

And here's for the darn doc -  :Kit n Stik;
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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.
2_DallasCowboys
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« Reply #7 on: January 16, 2010, 11:22:43 AM »
This is just such terrific news!!!!!! :yahoo; :yahoo; :yahoo;

When I read how your creatnine was just dropping, I knew someone was
not paying attention (Dr)   that Doc need a good    :Kit n Stik;


please keep your fingers crossed for my Big Guy, he goes on D once a week
for 3 hrs this week,

Love Anne

Edited - Fixed smiley error: paris, Moderator
« Last Edit: January 16, 2010, 12:02:16 PM by paris » Logged
lou
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« Reply #8 on: January 16, 2010, 11:38:42 AM »

Wow Lori, that is amazing news!!!  :bandance;  I am so happy for you.  :cuddle;

Well just goes to show that anything is possible.

What do you think will happen in the future? If you keep as healthy as you can, do you think you will be able to carry on without needed a transplant?

I hope you are having an amazing weekend celebrating whatever you are doing!!

Sending loads of love x x
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fc2821
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« Reply #9 on: January 16, 2010, 11:47:22 AM »
   Lori, this is fantistic news!   :yahoo; :yahoo; :2thumbsup; :clap;   :pray; That dialysis will only be a memory for you, and your kidneys work well as long as you need them.  Gotten use to reading your posts here, it will be like loosing a friend.  Have a good life.
                                                                                  Rob
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In center hemo dialysis since Feb 14, 2007. 

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Brianna!
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« Reply #10 on: January 16, 2010, 11:49:27 AM »
Lori! That's amazing news! Wow! If your creatine is 1.6 there is for sure no need for dialysis right now! I hope you can stay off dialysis as long as possible. Or forever?! Do you think that will happen?

What was your creatine when you started?
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willowtreewren
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« Reply #11 on: January 16, 2010, 12:05:30 PM »
This is truly wonderful news!  :cheer: :cheer:

Besides staying hydrated and keeping up the protein intake, I would advise you to avoid artificial sweeteners as they are not good for the kidneys overall.

Otherwise...ENJOY!  :bandance; :bandance;
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Wife to Carl, who has PKD.
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
paris
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« Reply #12 on: January 16, 2010, 12:10:22 PM »
Such a wonderful post!  You are the bright spot in my day   :2thumbsup;     Now, go live life!!    :cuddle;
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del
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« Reply #13 on: January 16, 2010, 06:27:17 PM »
 :bandance; :clap; :yahoo; I'm so happy for you!!!  Take a  :Kit n Stik; to those doctors!!
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« Reply #14 on: January 16, 2010, 06:33:50 PM »
Fantastic!!!
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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.
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« Reply #15 on: January 16, 2010, 06:47:41 PM »
Praise God!!!!! Our own little miracle right here on IHD. I am soooo happy for you. Just hope it lasts at least for a few years or so. Your story gives me hope and I hope you have a wonderful and beautiful life. Go and live it.!!!!!!! :grouphug;
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One day at a time, thats all I can do.
galvo
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« Reply #16 on: January 16, 2010, 10:18:12 PM »
Lori! Words fail me (for once). I am so so happy for you! My dialysis twin getting off the rotten D! You have always been an inspiration. You get out there and live life to the full each and every day. Heavens, I am getting a little teary!!
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« Reply #17 on: January 16, 2010, 11:39:23 PM »
 :thumbup; :thumbup; :thumbup; Love hearing good news!!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #18 on: January 17, 2010, 01:06:57 AM »
oh my gosh this is amazing!! I had no clue this was going on. So darn well happy for you Maker hun!!!! You keep it up!!

My advice to you? LIVE IT UP!!! Take this time to enjoy life all over again free of dialysis. Do the things you want to do and have found difficult lately. Get out there and have fun!

WOW!!

 :bow; :bow; :bow; :bow; :bow; :bow; :bow; :bow; :bow;
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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!
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This will be me...... Next spring.... I earned it.
« Reply #19 on: January 17, 2010, 06:41:21 AM »
Lori     I just read this thread........ I am so happy for you and surprised......  You are one lucky girl......  make sure you stay in touch and let us know how you are doing....... its the best news .....  I am so excited for you.......
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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.....

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« Reply #20 on: January 17, 2010, 07:06:19 AM »
 :bandance; I am so happy for you.

Fixed Smiley - Rerun, Moderator
« Last Edit: January 18, 2010, 06:47:34 PM by Rerun » Logged
Poppylicious
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« Reply #21 on: January 17, 2010, 07:17:31 AM »
Awww, that is such brilliant news!

 ;D
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- wife of kidney recepient (10/2011) -
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Everything was beautiful, and nothing hurt.
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« Reply #22 on: January 17, 2010, 07:56:01 AM »
Lori,
that is fantastic news.

It's not unheard of for someone to be able to kick dialysis.  But it sure isn't common.  You're a thousand-to-one shot, congratulations!
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Malibu
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« Reply #23 on: January 17, 2010, 09:35:08 AM »
Congrats!  That is wonderful for you!!!
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« Reply #24 on: January 17, 2010, 09:48:45 AM »
That is simply amazing and wonderful news.   :clap;   :clap;   :clap;

A real happy dance time............   :bandance;  :bandance;   :bandance;

Congratulations!!!!
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