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Author Topic: Hello from Kansas I'm new...  (Read 6090 times)
Wilda
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Never give up...

« on: June 22, 2009, 02:43:23 PM »

Hi my name is Wilda and this is my story.

When I was born I was born with only half an esophagus so when I was three days old I had to have an operation to connect my stomach to my esophagus. Because of that, the doctors told my parents that I would be prone to get bronchitis all my life. So, whenever I got sick as a child, I was usually treated for bronchitis. When I was 16 I started going blind. I was taken to get my eyes checked and the eye doctor said, it’s not her eyes there is something else going on. I was put in the hospital for a lot of test. Come to find out, it was kidney disease caused by yet another birth defect. I was born with one kidney smaller than the other one which made me eventually have high blood pressure which made both kidneys go bad. They found all this out because my blood pressure was through the roof and causing me to go blind. The kidney doctor that I had at that time was a joke. He told my parents that I did not have a hope or a prayer and to start making arrangements for my funeral. My father wanted to punch him out. He told the doctor that he no longer wanted him as my doctor, and did some research and found another kidney specialist to take my case. (Dr. Sidney G. Marcum – retired now)   He told my parents after a full exam that I was in very bad condition but that no doctor should ever say there is never hope or someone doesn’t even have a prayer. I was put on dialysis until I was 18 and my eyesight improved. I hated dialysis and started to give up on living. My parents said to my doctor, okay, what else can we do? He suggested looking into a kidney transplant. You have to understand, in 1978 there were not a lot of kidney transplants done yet, so it was a pretty new thing to even consider.  Back then only your immediate family, your mother, father, sister or brother could only donate a kidney and they had to be 18 years or older. It was either that or be put on a waiting list for a cadaver kidney, which could take years. My health was rapidly deteriorating and I didn’t have years to wait. I had 6 brothers and sisters but only 3 sisters that were 18 or older. All my brothers are all younger than I am. No one was a match except my sister Jerri. Jerri was a (4) match which is the best you can get without being a twin. Jerri is 2 years older than I am. So on her birthday, I celebrate it like its mine too, kind of. I don’t get a cake and presents or anything, but I remind my husband that it is partly my birthday and ask him, so what are you buying me?  Ha Ha…  He just looks at me usually and rolls his eyes. Jerri was out of the hospital after the transplant in 2 weeks and has never had any problems. She has a beautiful healthy daughter and is very healthy. In case any of you wonder if the donor will have any problems having children or anything after donating a kidney. The answer is NO.  I made some kind of a record of getting out of the hospital the fastest of anyone after a kidney transplant. I am in some kind of medical journal, so I was told.  I got out of the hospital in only 1 month. I know that now-a-days you get out in a few days, I think. But remember, that was in 1978. A lot has changed. I still have to take medicine for rejection. I will have to take it the rest of my life. The way it was explained to me was that, the kidney is and always will be foreign to my body. My body will always see it as my sisters’ kidney. So that is why I have to take rejection medicine the rest of my life. No big deal. I can deal with taking a couple of pills a day instead of dialysis, believe me…   I just had a 6 month check up with my nephrologists (kidney doctor) and my creatinine level was still at (.07) which it has been for several years now. She told me that was near perfect.  I can live with that. 
I had two beautiful healthy daughters after my transplant. In case any of you are wondering if you can have children after a kidney transplant. The first time I became pregnant and told my doctor, he kinda freaked out. He suggested that maybe I shouldn’t have the baby. Remember, kidney transplants were still new and the doctors didn’t know what to expect back then. I only had my transplant for three years after I became pregnant with her. I told him I would take my chances. I had absolutely no problems with the pregnancy or the delivery. With my second daughter I got a completely different reaction from my doctor. (Same Doctor)  It was 13 years later and I went and told my doctor, the same one as before, that I was pregnant again. He was excited for me and said congratulations. No freaking out at all. Isn’t it funny how much medicine can change and the way doctors see things can change in 13 years. My second daughter was perfect in everyway also and I had no problems with the pregnancy or the delivery with her.  I did have a problem with my OBGYN doctor though. My regular OBGYN doctor had retired and she took his place. She had never had a kidney transplant patient before so she took every precaution. Which is good in a way. But, jeez I was so sick of test. My husband and I started calling her Dr. Test.  As a precaution, when I was about 6 months pregnant and because I was already 35 years old, she put me on complete bed rest. I gained a house. I thought it was so ridiculous. Anyway, everything turned out fine. Next month I will be 50 years old I don’t care. I look forward to every birthday.  My husband that I am married to now, is my best friend. And I am so blessed to be alive and to be married to him and to have both of my beautiful daughters.  I just want to tell all of you to never give up. There is always a hope and a prayer.
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I received a kidney from my sister on March 16, 1978. :)
Never ever give up.
Live life to its fullest...
willieandwinnie
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« Reply #1 on: June 22, 2009, 02:57:23 PM »

 :welcomesign; Wilda. And WOW! Great story and so glad you joined us. Great folks here with all kinds of information and support and I'm sure we will great advice from you. Please post often.  :cuddle;
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« Reply #2 on: June 22, 2009, 03:11:28 PM »

Wow, what an amazing story!  Thank you so much for sharing it.

Welcome!   :welcomesign;
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Wenchie58
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Always carrying the big silly grin!

« Reply #3 on: June 22, 2009, 03:12:18 PM »

 :welcomesign;  Glad to have you here!  You inspire me!
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
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My two beautifull granddaughters

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« Reply #4 on: June 22, 2009, 03:44:35 PM »

Welcome, Wilda.

I am so glad you joined and shared your story. It will be an inspiration to many, many folks.  :2thumbsup;

Post often.

 :welcomesign;

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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its me ...Chris

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« Reply #5 on: June 22, 2009, 03:52:43 PM »

thanks for sharing your story... :bandance;
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11/10/07 esrd
12/07/07 permcath placed
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transplant 4/15/08  from close friend and coworker  of 12 yrs. Thanks Jeff!!
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Might as well smile

« Reply #6 on: June 22, 2009, 08:10:47 PM »

 :welcomesign; 
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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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I can fly!!!

« Reply #7 on: June 22, 2009, 08:49:58 PM »

 :welcomesign;
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #8 on: June 22, 2009, 10:34:46 PM »

Welcome and thanks for sharing your story.  What an inspiration.
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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 #9 on: June 23, 2009, 06:56:32 AM »

Incredible story! You are a testimony to never giving up!

Where in Kansas are you from? I grew up in south central Kansas. Graduated from Halstead High School........
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We do what we have to do until we know what we are doing.
Wilda
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Never give up...

« Reply #10 on: June 23, 2009, 10:13:23 AM »

Incredible story! You are a testimony to never giving up!

Where in Kansas are you from? I grew up in south central Kansas. Graduated from Halstead High School........
I am in Emporia, Kansas, my daughter goes to Hartford Highschool in Hartford, Kansas.  Good to meet you...
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I received a kidney from my sister on March 16, 1978. :)
Never ever give up.
Live life to its fullest...
Epofriend
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This is what happens in Vegas!

« Reply #11 on: June 24, 2009, 11:26:53 PM »

 :welcomesign;

Thank God for your parents who wouldn't listen to the first neph and that gift from your sister, it sure sounds like you are enjoying it to the max. It is always good to read a story with so many positives, good news for many.

Welcome, good to have you here.

Epofriend, Moderator
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Maxridex
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« Reply #12 on: June 25, 2009, 03:50:10 AM »

 :welcomesign;
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'' Never give up '' & '' You will never walk alone ! ''

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« Reply #13 on: June 27, 2009, 12:08:12 AM »

 :welcomesign;

Great story! I love happy endings. :2thumbsup;
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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!)
Wilda
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Never give up...

« Reply #14 on: July 23, 2010, 09:03:18 AM »

Hi everyone, I just celebrated my 51st birthday yesterday. Woo Hoo... I celebrated my 32nd kidney transplant anniversary on March 16th of this year (2010). I am still doing well. I haven't been on here in a while. Good to be back. Hello to everyone here.
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I received a kidney from my sister on March 16, 1978. :)
Never ever give up.
Live life to its fullest...
sumalee
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« Reply #15 on: July 23, 2010, 03:38:59 PM »

Happy Birthday. Wow great story and you are so lucky. I am new to this site it make me feel better and more hope after I read your story. I am on PD also waiting for a transplant.

Thank you for share.
Best of luck
Sumalee
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found out have kidney disease 1989
start PD November 2008
On a waiting list for transplant active December 2008
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« Reply #16 on: July 23, 2010, 04:34:43 PM »

Cool.  you got your kidney 2 months and 12 days before I was born. *G*
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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« Reply #17 on: July 23, 2010, 07:11:06 PM »

We are very pleased to hear about your 32nd kidney transplant anniversary.   Gregory was told to expect about 6 years out of his kidney transplant, he's at 18 years now and sometimes we get nervous... Well, I get nervous, Gregory would use some other term.  He said, when I read your note out to him, "That's very encouraging!"
Thanks for commemorating your most excellent kidney! 
Here's to your sister, a very fine woman  :beer1;
and belated happy birthday to you!   :birthday;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #18 on: July 23, 2010, 09:11:53 PM »

I know exactly where Emporia is because I passed near there today on my journey from Houston to Chicago.  Right now I am in Lawrence; today my DH and I went through Council Grove and the Tallgrass Prairie Preserve.  I love Kansas!  I thought it would be all wheatfields, but the bit I've gone through today has been gorgeous...green and gently undulating.  But Lord, it is HOT!  Windy and 100 degrees!  Whew!  But enough about all of that...I am so glad you posted because I'm not even on dialysis yet but I sometimes still feel like giving up.  I get so scared about the future (or lack of it...), so I'm always encouraged when I hear stories like yours.  Thanks so much!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #19 on: July 23, 2010, 11:59:06 PM »

Wilda, what a wonderful story of your transplant. Congratulations on not only " hanging on" to your kidney, but for your wonderful and uplifting attitude. Please dont wait another year to come back and let us know how you are doing.
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One day at a time, thats all I can do.
galvo
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« Reply #20 on: July 24, 2010, 12:10:40 AM »

 :birthday;, Wilda, to you and your kidney.
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Galvo
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« Reply #21 on: August 11, 2010, 08:01:15 PM »

Hi neighbor!!
I am from Kansas as well. About 1hour 1/2 northeast of Emporia. Your story is so inspiring!!
Thanks for sharing it.
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Save A Life....Be A Donor!
Liver Transplant Recipient ~ 5 Years Ago ~ Blessed :)
Diagnosed in Kidney Failure ~ March 2009
Fistula Placement ~ Upper left Arm ~ Aug. 17th 2010
PD Cath placement - 5 months ago
D started 3 months ago - Manual's 3x a day. Going to try the cycler in a couple of weeks :)
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #22 on: August 12, 2010, 10:31:37 AM »

A belated welcome to our community, Wilda!  And an A+ on Epoman's behalf for that absolutely lovely introduction.  It was so full of hope and victory in spite of challenges.   :birthday;  and you keep on keeping on, girlfriend!
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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;
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« Reply #23 on: August 12, 2010, 01:56:42 PM »

 :welcomesign;
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"So it's written, so it shall be done."
May 2010 : started HD
Dec 2010 : switched to PD
Jan 2011 : completed transplant eval @ Mayo Arizona
Nov 15th 2011 : Successful living donor transplant @ Mayo
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