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Author Topic: Hi--new here-have posted a few times  (Read 3276 times)
sherrile
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« on: March 12, 2007, 11:17:51 PM »
Hi everyone!  I am not on dialysis, but my 18 year old Son is.  He was born with ARPKD.  We were told he was going to live a very
short life, would be lucky to live to 2 months.  He sure proved those Docs wrong, but it has not been an easy road.  Levi's kidney's
failed when he was two, so we did peritoneal dialysis and tube feedings til he was 4.  He got his first kidney transplant after 3 weeks on the list.  That kidney had worked  wonderful for 12 years.  Then it decided to quit about a year ago.  I was going to donate to him on July 11 last year.  Every thing looked great, up until the final crossmatch.  Surgery was cancelled the Day before, because
he had mild B cell reactivity to me, and the whole thing was called off!!   Everything just seemed to fall apart. At least they caught it before the transplant.  So now I think it is time to look into something to help those antibodies go away, so we can proceed.
I have a lot of faith in our Lord, and I pray everyday for guidance. Sherri  :thx;
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Wattle
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« Reply #1 on: March 12, 2007, 11:21:36 PM »


 :welcomesign;  Sherrile.

Your son has had quite a journey already. I look forward to seeing you in the forums.     :cuddle;
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #2 on: March 12, 2007, 11:25:51 PM »
Welcome to our community, Sherrile.  I saw your posting in another section and am glad that you introduced yourself to us.  This is just the place for you to be.  When you need to vent, we are here for you.  We will be with you through thick and thin.  This site has proved a real Godsend for many of us, and we have developed into a real family, caring and sharing.  This is a quite difficult time for us as the creator of this site passed away just a little while ago, but we are determined to keep it going as he would have liked.
So, continue to read, and to post.  My caring thoughts and prayers are with you and your son.  I hope that things work out shortly.  Am pleased to know that your faith is in the right place!


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;
Joe Paul
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« Reply #3 on: March 13, 2007, 12:37:29 AM »
Welcome Sherrile, 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
Sluff
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« Reply #4 on: March 13, 2007, 04:05:48 AM »
Welcome to IHD

Sherrile,
   
Thanks for introducing yourself,

I'm glad your son has beat the odds, but too bad for the kidney failure, however  you have come to the right place.

I am glad you decided to join us.  You will find much here - if nothing else, a place to vent when you have to.  This is a very caring community that has developed into a real family.  Looking forward to hearing much from you.


Sluff, Administrator
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kimcanada
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« Reply #5 on: March 13, 2007, 05:01:32 AM »
:welcomesign; Sherrile

I am glad that you picked us to help you through this journey :)

Kim
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kelliOR
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« Reply #6 on: March 13, 2007, 10:31:43 AM »
Hi Sherrile,

Sounds like your son is a very strong young man!  No doubt you had much to do with that!  Glad you are here.

kelli
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Shoot for the Moon.....Even if you miss, you'll end up among the Stars ........


Denied PKD for years (Boy, was I good at it!)
Dragged kicking and screaming to dialysis (in center hemo)
Transplant from a friend March 24, 2006 at OHSU
MyssAnne
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« Reply #7 on: March 13, 2007, 01:45:04 PM »
Hello, Sherrile! Glad you're with us, you'll be able to give us some insight/advice
as a mother/caretaker. Enjoy the group, as several have said, we are all one family
here!
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anja
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« Reply #8 on: March 13, 2007, 08:46:15 PM »
 :welcomesign;  Sherrile to the community!
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angela515
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i am awesome.
« Reply #9 on: March 13, 2007, 08:51:12 PM »
 :welcomesign;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
carolyn77531
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« Reply #10 on: March 14, 2007, 07:11:02 AM »
 :welcomesign;
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YOU are stronger than you realize.
Wiser than you know.
What was once your life is now your legend.........
Zach
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« Reply #11 on: March 15, 2007, 09:57:47 AM »
Welcome to site, for both you and your son.
 :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."
carolyn77531
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« Reply #12 on: March 15, 2007, 10:36:46 AM »
hello sherrile..I'm really sorry i didn't really read your post until now...my daughter they also told me was going to live a short live..i did alote of research of her kidney disease..most kids did not make till there first birthday..when she was born they only knew of one kid who was born with this kidney disease in the u.s this disease they only knew of cases from Finland..many times we had to go to hospital due to complications..when i felt like they should have removed her kidneys...had her dialysis..they had her on list several times( its really frustrating when u think its almost over..she will have a decent life..then her renal function will improve they had to take her off the list...to me that was the worst part...then finally when i pleaded with them so many times..they needed to do something..it had to take her to get so sick that she wasn't thriving...then they finally did something
she was on tube feedings, and dialysis before her transplant...she got her transplant at 5yrs old...we had a wonderful 10 yrs with no complacations until Oct 2006 when she went into rejection...back on dialysis...she hasn't got put back on the list yet...
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YOU are stronger than you realize.
Wiser than you know.
What was once your life is now your legend.........
goofynina
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He is the love of my life......
« Reply #13 on: March 15, 2007, 02:41:07 PM »
Hi Sherrile,   Welcome to IHD,  This is the best place for you to find support for you and your son,  i hope you come often and keep us posted on how he is doing.  Looking forward to hearing more from you...  :2thumbsup;

Goofynina/Admin.
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....and i think to myself, what a wonderful world....

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kitkatz
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« Reply #14 on: March 15, 2007, 04:21:14 PM »
This is a great place to come to get answers to questions.  Welcome! I hope your son is doing well.






kitkatz, moderator
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Razman
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« Reply #15 on: March 15, 2007, 05:02:27 PM »
Welcome aboard.  I hope that you never stop praying or trusting the Lord.
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billoggblog
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You Dialyse to Live....You Don't live to Dialyse!
« Reply #16 on: March 16, 2007, 06:31:25 PM »
 :welcomesign;
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Yesterday is History..........Tomorrow is Mystery..........
Today is a Gift...That's why they call it Present.
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