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Author Topic: Hi Everyone.......I'm Toni and totally new to this forum.  (Read 5793 times)
Toni Cordy
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« on: April 08, 2009, 11:54:35 AM »
I'm 42 d and a mother of a 16 yr. old (God help me).  I started dialysis last year on April.  I've had Sysemic lupus since I was 15 yrs. old.  As you could have guessed, it attacked my kidneys.  Although I had a couple of dialysis treatments back then, my kidneys began working again and I managed to stay off dialysis for 24 yrs.  Unfortunaltly, 2 yrs. ago, my kidneys finally gave out.  My lupus is under control now, but, the scarring in my kidneys is so bad, they hardly work.  I am currently on the kidney transplant list and am awaiting a kidney.  For now, I do the best I can.  I have good days and bad days..........sooo, I enjoy every good day I have.  I am currently on hemodialysis, although I started out with peritoneal.  Knowing both these two types of dialysis, I much prefer peritoneal.  It is way easier, you have more freedom with your food and liquid intake, and most of all, it is painless.  I had to go to hemodialysis due to stomach spasm attacks I suffer from, which doctors later,  diagnosed me with irritable bowel syndrome.  Due to such pain, the pd only exhasberated the pain so I was switched to hemodialysis.  ........ and now, here I am.   I have good days and bad days with hemo.  I mostly suffer from cramping and low blood pressure.  It happens so often, I cannot get all the extra fluid off me.  I have been researching  for an herbal remedy, because I refuse to take quinine sulfate.  If anyone has any remedies for this........please tell me about them, any info would be greatly appreciated.   
Well..........I hope to hear from you all............Have a great day!  Your friend, Toni
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Toni Cordy
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« Reply #1 on: April 08, 2009, 11:57:33 AM »
Hi Toni  :waving; I have kidney problems do to Lupus too.  Haven't started dialysis yet, hopefully won't for a few more months.  This is a wonderful site, gald you found it.  Hope to see you around some
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
paul.karen
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« Reply #2 on: April 08, 2009, 12:06:42 PM »
 :waving; Toni

Nice intro.  And your welcome for earlier :thumbup;

Sorry you had to switch from PD to hemo.  Hopefully you have more good days then bad.
You found a great site for research and questions.  Hope to see you post on many of the threads.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
willieandwinnie
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« Reply #3 on: April 08, 2009, 12:16:10 PM »
 :welcomesign; Toni. What a wonderful introduction. We hope you enjoy our group and can find all the information and support you need. Please post often.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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My two beautifull granddaughters

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« Reply #4 on: April 08, 2009, 01:37:47 PM »
Hi, Tony,
I am (only) a care-giver for my husband who is on dialysis. I, to am fairly new to this forum, but it has given me great emotional support. I hope you find that true, as well.

There are so many knowledgeable people here, and so caring. You have found a wonderful place to visit.

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. :)
kellyt
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« Reply #5 on: April 08, 2009, 01:43:26 PM »
:welcomesign;
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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
G-Ma
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« Reply #6 on: April 08, 2009, 03:38:22 PM »
 :welcomesign;

and Note to Willowtree:  You are never """only""" a caregiver....without caregivers we would probably not make it.    :cheer:
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
David13
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« Reply #7 on: April 08, 2009, 04:49:32 PM »
Welcome, Toni!   :welcomesign;

Sorry to hear about the need to switch from peritoneal to hemodialysis.  Just take it one day at a time.

You will find a lot of great information and support here. Look around at all of the posts, ask questions when you have them, and share your experiences.
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
Wallyz
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« Reply #8 on: April 08, 2009, 09:09:47 PM »
Welcome Toni.  We are here for support and advice and if you are single, RichardMel may hit on you.  He lives is Australia, so you should be safe.
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Joe Paul
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« Reply #9 on: April 08, 2009, 10:59:50 PM »
Welcome Toni, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
TeenHatesDialysis
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« Reply #10 on: April 08, 2009, 11:47:15 PM »
 :welcomesign; Toni,

If you can survive with a 16 year old daughter, you can do anything!!! :cheer:  I have 3 wonderful daughters. The oldest is 20 and healthy, then 18 years old with a kidney function of 18% and in 100% denial that anything is wrong with her and 14 year old baby girl that has been on diaysis for 15 months.

I am glad that you are listed and hope that you get a new kidney soon!   :grouphug;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
pklipe57
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« Reply #11 on: April 09, 2009, 07:15:30 AM »
 :welcomesign; to IHD.  We're glad you're here. 
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paris
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« Reply #12 on: April 09, 2009, 07:00:24 PM »
 :welcomesign; Toni.  This is a great place and we are glad you joined. There is so much information here.  And even more support.  We all care about each other and try to help any way we can.  So, we look forward to hearing more from you and learning more about you (and the 16 yr old!)   Glad you found us.   :cuddle;




paris, Moderator
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monrein
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« Reply #13 on: April 09, 2009, 07:05:33 PM »
 :welcomesign;  I look forward to hearing more from you.
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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
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« Reply #14 on: April 09, 2009, 10:09:07 PM »
Hello again Toni,

My 14 year old was having problems getting all of the fluid off without cramping and her BP bottoming out and I discussed it with her today.  She takes Norvasc for BP and said that taking it several hours after dialysis on her hemodialysis days helps get more fluid off without her bp bottoming out.  She has really had to reduce her fluid intake to one liter a day, which she hates, but has eliminated the other problems of bp bottoming out (she has passed out several times) and cramping.

I hope this helps. Have a wonderful weekend. :cuddle;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
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« Reply #15 on: April 10, 2009, 04:21:56 AM »
Welcome to our community, Toni! So glad you found us and decided to join us.  This is just the place for you to be, as I know you have discovered already.  this is not just a forum - it's a genuine sharing and caring family :grouphug;  So please take advantage of all the site has to offer.  Keep reading and keep posting.



Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
Toni Cordy
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« Reply #16 on: April 24, 2009, 12:16:31 PM »
 :flower;  Thanks for such a "Warm Welcome"!  ........You guys are GReat!   :bandance;

Well, things are going well..........I do have to share this story to share with you.  Recently, I was out of town, in my hometown, Laredo, Tx.  I was there to get rid of 2 storage units I've had there for about 4 yrs.  Boy, was that a Chore!  I'm glad I had my folks, lil brother and his friends to help. ....Thank God!  "the call" from the donor people.  Unfortunately, they were in a time crunch and they needed me to be there within the hr.  For those of you who are not aware of where Laredo is...............it is about 5 hrs. away from Houston.  And there you have it.  They had to bypass me.  Bittersweet.   Good news is.......they told me, if they called me this time.......they will def. be calling me again.  I'm just shocked they called me soo soon.  I was just placed on the list about 2 mths. ago!

All in all...........it was just not meant to be.  And anyway, I have a wonderful, loving niece who is getting tested as we speak.  Hope that pans out.  Can you believe she was born with 4 kidneys???.........wow, God really works in mysterious ways!


Well guys.........Thanks for lending me your ears!  Be Strong!  Live Full!  Have a Great Weekend!  Toni


Edited: Fixed smiley error - paris, Moderator
« Last Edit: April 24, 2009, 12:41:26 PM by paris » Logged
Toni Cordy
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« Reply #17 on: April 24, 2009, 12:18:53 PM »
Wow!  Sorry to hear that you missed out Toni, but it seems you have a good spin on it. 

Your niece with the four kidney would be very popular around here!   ;)
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
paris
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« Reply #18 on: April 24, 2009, 12:43:16 PM »
I am sorry you missed out on the kidney, but it is really good to get a call after only 2 months!  Crossing fingers another one comes very soon. 
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Tinah1968
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« Reply #19 on: April 24, 2009, 12:47:12 PM »
Wow sorry you missed out on the Kidney.. Goodluck with your Nieces testing. And Welcome.
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Tina
Fistula Oct 2007
Started Dialysis May 22, 2009
willowtreewren
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My two beautifull granddaughters

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« Reply #20 on: April 24, 2009, 01:10:27 PM »
Hi, Toni!

How ironic that you missed that call!  :thumbdown;

That is amazing about your niece. I had never heard of her. Seems she could give you 2 kidneys if she is a match!  :clap;

We will be rooting for you!!!

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. :)
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