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Author Topic: Goofy Here!  (Read 3450 times)
Goofy
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« on: July 26, 2009, 12:15:14 PM »
I'm a 52 year old female with PKD.  I live in the Chicago area. I was diagnosed with PKD in 1994 and have now progressed to ESRD.  My father had PKD and ultimately died from complications. 

Currently I’m on three waiting lists.  Northwestern in Chicago, University of Wisconsin Medical Center at Madison and Froedtert Hospital in Milwaukee, WI.

I've come to this site for information and to communicate with people who actually know what I'm talking about.  I have a very supportive husband, son and daughter but they don’t quite understand my resistance to start dialysis so I’m sure I’ll find people here who!

Sincerely,
Goofy

P.S.  People call me goofy because I am.....goofy!  I have a good sense of humor and use it to maintain my sanity!
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Romona
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« Reply #1 on: July 26, 2009, 12:41:53 PM »
 :welcomesign;
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Jie
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« Reply #2 on: July 26, 2009, 01:03:41 PM »
Welcome on board, Goofy.

Please be open mind about dialysis. At some point, you will feel badly without dialysis.  Of course, if you can get a transplant without going into dialysis, it is great. Dialysis is always there for backup even if you have a transplant.
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willowtreewren
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My two beautifull granddaughters

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« Reply #3 on: July 26, 2009, 01:08:57 PM »
Hey, Goofy!

Welcome. My husband and daughter have PKD. We have been doing home dialysis for about a year.

You have come to the right place to find folks who understand.

 :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. :)
willieandwinnie
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« Reply #4 on: July 26, 2009, 01:20:28 PM »
 :welcomesign; Goofy. You found the place for folks to understand what you are going through. 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"
dh514
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« Reply #5 on: July 26, 2009, 01:48:22 PM »
Hello,

I have PKD and my dad and brother both who had PKD have passed away from compilations, I have one brother left who also has PKD and has been on dialysis for many years.

I have been on dialysis since October.

I did not find this site until i had already started dialysis, but there is a tremendous amount of information here that will help you to decide which type of dialysis is best for you.
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monrein
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Might as well smile
« Reply #6 on: July 26, 2009, 03:05:02 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
Rerun
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Going through life tied to a chair!
« Reply #7 on: July 26, 2009, 03:09:48 PM »
Hi, I read your other post first, so Welcome to IHD.

I hope you get your transplant soon.  I'm glad you choose PD.  I think it is the best and least invasive for temporary dialysis while waiting for the gift of life.

Best of luck and keep posting here.  You will like some of the funny stuff on here.

                   :welcomesign;
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Zach
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« Reply #8 on: July 26, 2009, 03:11:14 PM »
It's real good to have you here!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #9 on: July 26, 2009, 04:38:09 PM »
Ooops - I think I welcomed you on the wrong thread!  Welcome again, anyway...
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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.
Chris
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« Reply #10 on: July 26, 2009, 09:09:44 PM »
Hi Goofy
I bet you'll get a transplant faster in Wisconsin than at Northwestern, but you may already know the wait times.

Finally getting more people in here from Illinois, woohoo  :rofl;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #11 on: July 28, 2009, 12:02:24 PM »
Welcome to our community, Goofy!!   Your name is close to that of our late administrator - Goofynina, a very special person.  I look forward to you making your goofy addition to our IHD family  :grouphug;
I read your posting about dialysis before I read your intro.  Hope everything is working out well for you.  As I said before, you now have you IHD family to go through everything with you.  Just 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;
thegrammalady
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« Reply #12 on: July 28, 2009, 05:08:31 PM »
 :welcomesign; glad to have you.
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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For You Are Crunchy And Taste Good With Ketchup
YLGuy
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« Reply #13 on: July 28, 2009, 05:55:54 PM »
 :welcomesign;
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Jess21
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« Reply #14 on: July 28, 2009, 06:37:27 PM »
 :waving; Goofy!
Yay another Illinois person!!  :yahoo;  The elite, what, 3 now? I think Chris and I are about the only ones on here from IL.
I too was listed at Northwestern and UW in Madison.  I was on the list at Northwestern for 8 months, got the call at UW in Madison after a week and a half.  A bit of a drive, but worth it!  That is why Chris bets you'll get one at WI, I bet.  ;D  Again,  :welcomesign;
Quote from: Chris on July 26, 2009, 09:09:44 PM
Hi Goofy
I bet you'll get a transplant faster in Wisconsin than at Northwestern, but you may already know the wait times.

Finally getting more people in here from Illinois, woohoo  :rofl;
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Chris
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« Reply #15 on: July 28, 2009, 08:47:17 PM »
Jess we are up to 4 in Illinois, cariad is from downstate Illinois.  :2thumbsup;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
cariad
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What's past is prologue
« Reply #16 on: July 29, 2009, 01:35:36 PM »
Welcome, Goofy!

I am pretty familiar with all three of you transplant centers. I wish you luck and hope that call comes in for you soon!

Sadly, Chris, I am not an Illinois resident, just a far-less-glamorous Wisconsite.  ;)  As you know, though, I will most certainly be a temporary Chicago resident in the near future. For now, you remain the Elite Three!

I look forward to getting to know you better, Goofy!

 :welcomesign;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Chris
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« Reply #17 on: July 29, 2009, 08:11:18 PM »
OK, someone here is from downstate Illinis and I can't remember >:( It was my first incling that it was you Cariad, sorry.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
kitkatz
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Posts: 17042
« Reply #18 on: August 02, 2009, 07:09:54 AM »
Sometimes you have to be Goofy when dealing with dialysis stuff.  Welcome to the site!  There is a lot of supportive people. You will find a sense of humor as you read some of the board!



kitkatz,Moderator
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