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Author Topic: New member in Ohio  (Read 2769 times)
cloud393
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« on: April 17, 2009, 10:49:38 AM »
My name is Lorie and I was diagnosed with Polycystic Kidney Disease in 1990. My kidney function was good until about 3 years ago, although I have taken blood pressure meds for the last 12 years.  My  creatinin was 2.5 in April of 2008 and in October of 2008 it was 3.9.  Maybe not as bad as some but I just felt so lousy.  Extreme fatigue, trouble sleeping, nausea, headaches, trouble concentrating & remembering things.  It was horrible.  Needless to say I developed some depression too. The worst part I think is my body image.  I use to be a size 5 and am now an 18.  I look more pregnant now than I did when I really was. (and I have 4 kids ages 19, 16, 13 & 10) I've been told each of my kidneys weigh 40 pounds. I started Peritoneal Dialysis on 2/16/09 and it has helped with the headaches and concentration but I still get nauseous alot & want to sleep all the time.  I'm going through the process of getting on the transplant list but have concerns about that too.  Although I have an aunt who just got a new kidney about 3 weeks ago and is doing just wonderful. Unfortunately the PKD runs strong in my mothers family and I've seen what it can do to people. 
Well thanks for listening to my ramblings.
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May you live as long as you want and never want as long as you live.
MandaMe1986
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« Reply #1 on: April 17, 2009, 10:59:48 AM »
Hi Cloud.  Happy to have you.  You feel free to come and ramble on all you want. We are always all ears.  I am sure you will find so many wonderful, supportive people on this site. I hope you come and visit us often.

Take Care
~Manda
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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
willieandwinnie
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« Reply #2 on: April 17, 2009, 11:04:27 AM »
 :welcomesign; Lorie. You have found the greatest place for information and support and we love ramblings. Please post often and check the older threads as there is loads of information there. Ask any and all questions and someone will answer you. Again, welcome.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
rookiegirl
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« Reply #3 on: April 17, 2009, 11:11:49 AM »
Welcome to IHD.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
cherpep
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« Reply #4 on: April 17, 2009, 12:08:06 PM »
Hey there Buckeye!!  I'm a Michigander.  Glad to have you here, you came to the right place.

Are you a Columbus Blue Jacket fan?  I'm a big Red Wing fan. 
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paul.karen
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« Reply #5 on: April 17, 2009, 12:33:56 PM »
 :waving; Cloud

Glad you found us here at IHD the webs BEST site for dialysis related topics and discussions.
Im sorry your in so much pain with such big PKD kidneys.  I also have PKD and it hurts SO BAD.  I hope you find some relief.
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
G-Ma
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« Reply #6 on: April 17, 2009, 03:17:37 PM »
 :welcomesign;
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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
paris
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« Reply #7 on: April 17, 2009, 03:52:42 PM »
Hi Cloud,  Welcome to IHD.  All my family is in Ohio, most in Columbus and I still think of it as "home".  You have found a great site with so much information.  We are also here for support.  Many members have PKD and can relate to your situation.  Post often and let us now more about you.  We are glad you joined us.   :2thumbsup; 



paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #8 on: April 17, 2009, 04:32:46 PM »
Welcome Cloud! Whereabouts in Ohio are you? I live in Dayton. I don't normally reply in this section because my e-mail ends up getting slammed, but the "new member in ohio" link on the main page caught my eye. I had to drop in and say hello to a fellow Ohioan!
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Romona
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« Reply #9 on: April 17, 2009, 06:16:56 PM »
 :welcomesign;
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TeenHatesDialysis
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« Reply #10 on: April 17, 2009, 07:05:29 PM »
 :welcomesign; Lorie,

I am sorry that you have to go through all of this crap. It must be very difficult going through all of this and caring for four kids! I am glad your aunt got a new kidney.  Welcome to the group and feel free to come here to vent or research or just chat.  This is a very supportive group.  :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!)
Wattle
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« Reply #11 on: April 17, 2009, 11:19:57 PM »
 :waving;  Welcome Cloud

I too have PKD and am on PD. I really understand the pregnant feeling. Some days it just sends me gaga   :urcrazy;

I am glad you found us.
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Joe Paul
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« Reply #12 on: April 18, 2009, 12:09:33 AM »
Welcome Cloud, 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
willowtreewren
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My two beautifull granddaughters

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« Reply #13 on: April 18, 2009, 03:31:03 PM »
Hi, Lorie.
 :welcomesign;

My husband and just about everybody in his family has PKD. He has been doing NxStage since August and is feeling soooo much better. I hope your dialysis starts to do its stuff to help you feel better soon, too.

Keep us posted on your progress. We all care.
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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