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bostonboxer
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« on: February 28, 2007, 07:10:22 AM »
My name is Shirley.  I have been on PD dialysis and on the transplant list for 2.5 years.  I learned I had IGA Nephrapathy 11 years ago.  I was told by my doctor that it was not a problem and not to worry about it.  He never seen anyone have to go on dialsys with IGA and sent my home with no follow ups.  Then in 2001 my blood pressure went sky high and my family doctor told me to see the kidney doctor again.  When I went back to the kidney doctor he told me it was too late for him to help me and I should just order my casket.  After hearing this I decide to drive 90 minutes to the a bigger city with a much better hospital.  This new doctor gave me hope and help me stay off dialysis for 3 years. Now I have the best doctor in the world.  He seems to really care about all his patients. : ;D  I am married and have a 14 year old son.  I also have 2 dogs that I consider my daughters.




EDITED:  Moved post to proper thread "Introduce Yourself" - Goofynina/Admin.
« Last Edit: February 28, 2007, 03:01:20 PM by goofynina » Logged
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: February 28, 2007, 07:45:37 AM »
 :waving; Hi Shirley,
Glad you didn't give up and were able to find good care!
When you have a chance you could post a photo of you and son and dog-ters!  :lol;

Welcome!
Karol
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Joe Paul
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« Reply #2 on: February 28, 2007, 08:12:09 AM »
Welcome Shirley, 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 #3 on: February 28, 2007, 10:28:35 AM »
Hello Shirley,

What a great name, my mom has the same name. welcome to IHD.

This is the best place to get information about dialysis and kidney disease and it's treatments. With all your years of experience, I'm sure you have plenty of stories to share.

We value your input, so feel free to browse and post as often as you like.


Sluff, Moderator
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aharris2
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Volcan Pacaya, Guatemala
« Reply #4 on: February 28, 2007, 10:53:55 AM »
hi Shirley, we met on the chat room earlier today, i have a niece with the same name it's really nice...I'm also glad you didn't give up, doctors can be dumb sometimes. keep coming to chat I'm there all the time if not me then someone else from our great repertoire of personalities including epoman "the boss"...well i just wanted to say  :welcomesign; to our community.

 :beer1;

Rolando
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
Alisa
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« Reply #5 on: February 28, 2007, 11:05:57 AM »
Hi
I as well am new to the IHD so welcome. Everyonce is wonderful and I have learned so much on this chat is so little time.  Nice to meet you.

Alisa
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PD since 2005
Waiting for transplant
Rerun
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Going through life tied to a chair!
« Reply #6 on: February 28, 2007, 11:41:26 AM »
Hello Bostonboxer and welcome to IHD.  Please make a post in General Dialysis and explain IGA Nephrapathy.  I have not heard of that before. 

This is the place to learn new things about dialysis as well as some old tricks.  I hope you enjoy the site.  Remember to visit the site to get your dialysis clothes.  www.mykidneygear.com


Rerun, Moderator       :welcomesign;
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anja
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« Reply #7 on: February 28, 2007, 12:29:25 PM »
 :welcomesign; Bostonboxer, to our community!  Glad you kept fighting and now have a great Dr.
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #8 on: February 28, 2007, 09:55:25 PM »
Welcome to our community!  You really blew me away with that account of how your first doctor dealt with you!  Thankfully, you did not give up!  It is absolutely unbelievable.  Anyway, we are glad that you chose to join us.  We have lots to teach you here, and we have lots to learn from you as well.  PLease keep posting.  Let us know how you are doing.  This is the place to be when you want to vent - you have lots of people who understand exactly what you are going through.
Welcome again.   :grouphug;

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;
shay_pcb
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« Reply #9 on: March 01, 2007, 02:14:54 PM »
OMG...I can't believe that doctor told you that!! It's a good thing you found a new one!!  :welcomesign; to IHD!!
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billoggblog
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You Dialyse to Live....You Don't live to Dialyse!
« Reply #10 on: March 02, 2007, 06:30:43 PM »
Hi Shirley, welcome to IHD.  We met on chat room today, (bill from Scotland) I hope you find this site as informative as I have, and look forward to meeting in chat again sometime.

Bill.
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Yesterday is History..........Tomorrow is Mystery..........
Today is a Gift...That's why they call it Present.
BigSky
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« Reply #11 on: March 03, 2007, 02:16:02 PM »
 :welcomesign;
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kelliOR
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« Reply #12 on: March 03, 2007, 06:11:45 PM »
Hello Shirley,

very nice to meet you!  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
jedimaster
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Stainboy is....alive!!!
« Reply #13 on: March 03, 2007, 07:24:24 PM »
 :welcomesign;
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kitkatz
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« Reply #14 on: March 03, 2007, 07:34:38 PM »
Welcome to the site.  You will find a lot of useful information here.
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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
George Jung
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« Reply #15 on: March 04, 2007, 03:37:58 AM »
Hi Shirley, welcome.  I too was diagnosed with IgAN and told not to worry.  I had some regular visits and my doctor told me my function was 75% and I would most likely out-live the disease.  Well, less than TWO years from diagnosis, I'm in center (for now) 3 days a week.  Can you say, complete shock?  Nice to have you with us under such unfortunate circumstances.
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Zach
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"Still crazy after all these years."
« Reply #16 on: March 04, 2007, 10:31:20 AM »
Glad you joined he community Shirley!     ;)
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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."
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