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Author Topic: 24 Years of trouble and I am still fighting  (Read 2106 times)
saramillard85
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« on: August 02, 2010, 06:34:58 AM »

My name is Sara and I live in Pueblo West, Colorado. I am 24 years old and I have been dealing with kidney problems my entire life. I had my first surgery when I was 6 weeks old, eight surgeries before the time I was 5 years old, and now that I am 24 years old the grand total has come to 59 surgeries and counting. I had CKD until the time I was 10 years old and ESRD until I was 14 years old. Two weeks after I started my freshmen year in high school I was told that I had to start dialysis. At that time I had chosen PD. The machine and all of the boxes made life extremely difficult. Not to menchin all of the infections I received from my PD tube. Luckily, in 2002 my father donated his kidney to me. For the first 3 months I felt spectacular. Unfortunately, Infection from Self-Catheteriztion caused the kidney not to respond so well. In Oct of 2003 I was back on dialysis, but this time I am on Hemo dialysis. I have been since then. I'm trying to get another transplant, but things aren't working so well in that form. No matter how heartbreaking it is, I keep fighting the fight.
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natnnnat
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WWW
« Reply #1 on: August 02, 2010, 07:11:10 AM »

Hi Sara, and a big warm welcome  :welcomesign;
I read your post to my husband, he says, you can have that record (most surgeries - 59!)   :bow;
He's only had about 20 and thankfully isn't planning anymore any time soon. 
Good for you that you are still willing to fight the good fight  :boxing; . As they say, what else are you gonna do?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
paul.karen
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« Reply #2 on: August 02, 2010, 07:47:53 AM »

Hello and welcome Sara,

Wow you have been through enough for several people.  I am glad you found IHD.  You could be useful for many people who may be going through some of the same operations you have had to put up with.  And hopefully we here can be able to help you along your journey.

I have one question.  As for PD & hemo since you have done both which do you prefer?
I understand PD wasnt the best experience for you.  But still all in all?

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
gothiclovemonkey
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« Reply #3 on: August 02, 2010, 07:53:46 AM »

Wow,
I am sorry to hear that you have been dealing with this all ur life, I could not imagine. Ive only been on dialysis since 07, and its already driven me insane. lol
I started on Hemo,and went to PD, i personally think PD has been better, but i have a child, and finding childcare being a single mom with limited income, pd is a better option, I also dont feel as sick as i did on hemo.... Altho the current issues arent much fun, still 100% better than hemo for me! (and the boxes!!!! no doubt so much trash!!!)
I hope that u dont have to have any more surgeries, unless its for a kidney! ;D
IDH is pretty awesome place.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
galvo
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« Reply #4 on: August 02, 2010, 09:34:13 PM »

G'day, Sara, and :welcomesign;. You sound a true battler and you're most welcome here!
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Galvo
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« Reply #5 on: August 02, 2010, 09:46:12 PM »

If I may ask, what obstacles are you currently fighting in getting another transplant?

I can't imagine having to deal with kidney krap your entire life.  I hope you can get another kidney soon and experience some semblance of a normal life.  Good luck to you, and thanks so much for joining us.  I look forward to reading many posts from you!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Jean
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« Reply #6 on: August 03, 2010, 01:09:06 AM »

 :welcomesign; to IHD and I hope you get a good tranplant, and soon. You sure are a fighter.
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One day at a time, thats all I can do.
Rerun
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Going through life tied to a chair!

« Reply #7 on: August 05, 2010, 12:25:33 AM »

Hi Sara and welcome to IHD.  I'm so glad you found us.  I hope you get another chance at a kidney soon.  You deserve to get one.

Read this when you get a chance.  Just the rules:  http://ihatedialysis.com/forum/index.php?topic=540.0

I'm looking forward to your posts.  I'm thinking you have a lot of advice.

Thanks for joining!

Rerun, Moderator        :welcomesign;
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RenalSurvivorDotCA
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10 Year Survivor

« Reply #8 on: August 06, 2010, 05:04:30 AM »

Hi, Sara and  :welcomesign;

Wow, 59 surgeries. That's a lot.  Glad you found us. Lots of experience here (people who "get" you)
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Your life IS worth living. Fight for it!
Zach
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"Still crazy after all these years."

« Reply #9 on: August 06, 2010, 08:51:57 AM »

It's good to have you join our community!

8)
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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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