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Author Topic: Intro - "Dad" - 3 kidney kids  (Read 2846 times)
Dad
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« on: March 16, 2009, 12:15:13 PM »
Read the Intro section and for some reason - could not find the "NEW Topic" button ?? - Went to the Caregiver page - and low and behold - there it was - So posted an intro on the Caregiver page.  Went back to the Intro page and now the "New Topic" button shows up ??  So now - Intro

Real Quick - I am Dad who has been caring for three (3) children in kidney failure since they have been 8-9 years old.  The oldest and youngest manifested the malady when they were at that age.  The oldest (now 29) has had 2 transplants and is now back on dialysis (PD) awaiting a third.  (You can read more of her story on the caregiver page).   The youngest - son age 24 - had his transplant at age 13 and - so far is doing very well.  He holds down a full-time job close to home.  The middle daughter - 26 - was just diagnosed with adult onset of the same genetic disorder that beset her brother and sister - and is also on PD at home with her sister.   She is a music teacher and doing very well on PD while teaching every day.

So while Mom has a real job - Dad is the caregiver for the oldest who is on a constant treadmill of therapy, doctors visits, and path to recovery and back into the work force while on PD and waiting for a 3rd transplant.

Let's see - Did I make sure I put in the last Baxter order ??

Great site - wish I would have found it sooner.
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glitter
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« Reply #1 on: March 16, 2009, 12:34:43 PM »
this site is being upgraded in the next few hours-it may have some anomalies.

http://ihatedialysis.com/forum/index.php?topic=12839.0;topicseen


dont despair- it is a very reliable place.  :welcomesign;
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
monrein
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Might as well smile
« Reply #2 on: March 16, 2009, 12:50:37 PM »
 :welcomesign;  to the best place for support, information etc.  I'm sure, from your intro, that you have tons to share with us also and I look forward to reading your posts.  I'm so sorry that you and your family are all dealing with the lifelong implications of ERD.  :grouphug;
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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
Joe Paul
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« Reply #3 on: March 16, 2009, 03:41:09 PM »
Welcome Dad, 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
willieandwinnie
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« Reply #4 on: March 16, 2009, 03:55:41 PM »
 :welcomesign; I second everything that monrein said. 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"
Romona
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« Reply #5 on: March 16, 2009, 05:58:24 PM »
 :welcomesign;
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mikey07840
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Her royal highness Queen Ruth on her throne, RIP
« Reply #6 on: March 16, 2009, 06:07:56 PM »
 :welcomesign;
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
Zach
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"Still crazy after all these years."
« Reply #7 on: March 16, 2009, 06:10:21 PM »
Welcome to the community!
 :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."
Rerun
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Going through life tied to a chair!
« Reply #8 on: March 16, 2009, 06:17:51 PM »
Dad, so glad you found our site.  Your road is a tough one but I'm glad your children have you to rely on.  When did you know that this was a problem.  Were like the first 10 years good and then you were slammed with the realization that all 3 of your children would end up on dialysis? 

I'm hoping you learn something from us as we will learn from you.

                                    :welcomesign;

Our site was being overhauled today.  Sorry you ran into problems.
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pelagia
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« Reply #9 on: March 16, 2009, 06:57:23 PM »
Welcome Dad.  I guess you must be a super expert caregiver by now.  I look forward to reading your posts and learning about your experiences.  I hope you will find the information here at IHD useful and also find support if you need it.  :welcomesign;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
MIbarra
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Stopping to smell the bluebonnets
« Reply #10 on: March 16, 2009, 07:01:12 PM »
Welcome!  :cuddle;
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Cadaver transplant April 29, 2007
G-Ma
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« Reply #11 on: March 16, 2009, 07:19:43 PM »
 :welcomesign;   What a great caregiver....hope YOU have someone you can fall back on as I know caregiving is very difficult.
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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
Dan.Larrabee
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Dialysis Dan
« Reply #12 on: March 16, 2009, 07:24:46 PM »
Hi Dad and welcome
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
www.youtube.com/dialysisdan
paul.karen
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« Reply #13 on: March 17, 2009, 09:40:52 AM »
 :waving; Dad
Well you all have your hands full.
Glad you found us here and hope to see you posting often.
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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
Wenchie58
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Always carrying the big silly grin!
« Reply #14 on: March 17, 2009, 03:10:37 PM »
Welcome Dad, I'm sure you'll find loads of info here....and maybe a few laughs!  You've got your hands full!
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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
TeenHatesDialysis
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WWW
« Reply #15 on: March 18, 2009, 08:58:47 PM »
 :welcomesign;

I am also a parent of 3, one on dialysis (14 years old on dialysis for 15 months waiting for transplant), another with CKD in denial (18 years old; hanging in there with 18% kidney function, and one kid with healthy kidneys!  :-)

This is a great place to hang out for support and they are very informed. Welcome to the 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!)
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