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Author Topic: My bumpy road  (Read 5978 times)
T_wants2_pee_again
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2nd day in hospital when I found out I had ESRD
« on: October 22, 2008, 04:00:52 PM »
Hi all. I am very excited to find this site.  I did not know anything like this was around.  I think it will help a lot to talk to all of you.

Well, my story is kind of long but I will do my best to keep it short and (bitter)sweat.  In March of 2007 I became ill.  I was only 21 years old, going to school full time and working two part time jobs plus keeping up a socail life.  I just figured I got the flu from one of the kids at my job.  It had been 5 days and I was only getting worse, becoming jaundice and extreme stomach pain.  My mom finally talked me into going to the ER.  I went to Anderson ER ( a local hospital)  and before I really knew what was going on I heard the doctor saying someone get Barnes Hospital on the phone and see if they will admit her.  Even though Barnes is only about 45 min away(in St Louis) I thought wow that's a big name hospital what is going on?  Come to find out after about a million doctors and test I had Hemolytic Uremic Syndrome(HUS).  Because of this blood disorder my kidneys shut down.  The doctors are still not sure what caused it but are continually researching to find out why.  I was in the hospital for 6 weeks receiving blood and platelets and dialysis.  I recently found out that because of this blood disorder and a deficiency in a gene I can not receive a transplant.  Well, being 23 that is a total bummer to be looking at dialysis for the rest of my life.  Most days I can deal with it and carry on like normal but everyone has their bad days, so when I found this site where I can talk to people who understand I was TOTALLY excited.

That's my "kidney issue" story.  As, for just about me.  I am recently engaged and thrilled.  Still going to school to be a special education teacher and trying to work at Dairy Queen.  I love being outdoors and playing sports, but I HATE the restriction dialysis puts on life.  Talk to you all soon
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monrein
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Might as well smile
« Reply #1 on: October 22, 2008, 04:07:25 PM »
Hi T.   :welcomesign; to IHD and thanks for your great Intro.  I'm so sorry that you're facing all this crap at your age (not that it's good at any age but you know what I mean).  I was 26 when I first started D.
You sound as though you have a great attitude and it's exciting that you're engaged.  Congratulations. 
I'm glad that you found us too and I hope you'll post often.
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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
willieandwinnie
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« Reply #2 on: October 22, 2008, 04:40:29 PM »
 :welcomesign; T_wants2_pee_again (love the name). So happy you found us and we can't wait to hear more from you.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
southyard
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« Reply #3 on: October 22, 2008, 04:58:22 PM »
Quote from: T_wants2_pee_again on October 22, 2008, 04:00:52 PM
Hi all. I am very excited to find this site.  I did not know anything like this was around.  I think it will help a lot to talk to all of you.

Well, my story is kind of long but I will do my best to keep it short and (bitter)sweat.  In March of 2007 I became ill.  I was only 21 years old, going to school full time and working two part time jobs plus keeping up a socail life.  I just figured I got the flu from one of the kids at my job.  It had been 5 days and I was only getting worse, becoming jaundice and extreme stomach pain.  My mom finally talked me into going to the ER.  I went to Anderson ER ( a local hospital)  and before I really knew what was going on I heard the doctor saying someone get Barnes Hospital on the phone and see if they will admit her.  Even though Barnes is only about 45 min away(in St Louis) I thought wow that's a big name hospital what is going on?  Come to find out after about a million doctors and test I had Hemolytic Uremic Syndrome(HUS).  Because of this blood disorder my kidneys shut down.  The doctors are still not sure what caused it but are continually researching to find out why.  I was in the hospital for 6 weeks receiving blood and platelets and dialysis.  I recently found out that because of this blood disorder and a deficiency in a gene I can not receive a transplant.  Well, being 23 that is a total bummer to be looking at dialysis for the rest of my life.  Most days I can deal with it and carry on like normal but everyone has their bad days, so when I found this site where I can talk to people who understand I was TOTALLY excited.

That's my "kidney issue" story.  As, for just about me.  I am recently engaged and thrilled.  Still going to school to be a special education teacher and trying to work at Dairy Queen.  I love being outdoors and playing sports, but I HATE the restriction dialysis puts on life.  Talk to you all soon
Hi T. Welcome to the club and the site. I have been diagnosed with ESRD. and ill end my dialysis in January. The restriction along with other maladies of old age and personal beliefs are my reasoning  At your age I would probably make a different decision

I wish you the best

Southyard
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RichardMEL
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« Reply #4 on: October 22, 2008, 05:12:07 PM »
Hi T.. *hugs* what a horrible surprise to have that just fall on you in the absolute prime of your life with everything ahead of you.. specially with the blood issue aparently disallowing a transplant... I think though you should hold out some hope - the way research is going and with the recent increase in stuff like ABD incompatable transplants, maybe they will find a way to work around your issue too... or perhaps the stem cell growing "own" kidneys will be for you down the track. We can but only hope.

Still, it's great you're trying to focus on the positive things in your life like work, school and your engagement (congratulations!!) - having a loving and supportive family & partner around you is a really big help and will be so important for those times when it all seems like too much to bear.

Again.. welcome to IHD!!  :cuddle;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
twirl
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« Reply #5 on: October 22, 2008, 05:14:11 PM »
hello!  I wants to pee again too
so glad to know you
and please feel free to post about anything
are you back in school
do you know about noctural dialysis
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paris
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« Reply #6 on: October 22, 2008, 05:38:30 PM »
 :welcomesign;   "T"  So glad you found this site.  It is a great place to rant, vent, cry and then laugh with others who truly know what you are going through.  I hate that this all happened in your 20's.  Some things just don't seem fair.    I lived in St.Louis for many years and know Barnes Hospital.  It is one of the best.    Congratulations on your engagement!  How exciting.  :clap;    Looking forward to reading more posts from you.    :grouphug;





paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Rerun
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Going through life tied to a chair!
« Reply #7 on: October 22, 2008, 05:43:47 PM »
Hi "T" and welcome to IHD.  I love your name.  I'm so sorry that you have no hope for a transplant.  My advice is to wait a few years and check into it again.  Things change really fast on the transplant discoveries.  I was only 24 when I was "surprised" as you were with dialysis.  I didn't have any other complications, just kidney failure so I got a transplant right away.  It lasted 17 years and I've been back on dialysis for 3 years and don't really expect another transplant. 

I'm looking forward to your posts.

Rerun~
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G-Ma
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« Reply #8 on: October 22, 2008, 05:44:10 PM »
 :welcomesign;

Congratulations  :flower; on your engagement.

I am so glad you found this site and I was going to say what RM did say...hopefully research will have an aahaa moment and find an answer for you..I believe it is out there.
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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
Ang
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« Reply #9 on: October 22, 2008, 07:25:56 PM »
 :welcomesign;   T



congrats  on  the  engagement


bummer  on  the  no  transplant
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live  life  to  the  full  and you won't  die  wondering
Joe Paul
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« Reply #10 on: October 22, 2008, 11:33:32 PM »
Welcome "T", 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
idahospud
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« Reply #11 on: October 23, 2008, 12:47:57 AM »
:welcomesign; :welcomesign; glad you found us .  carol
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annabanana
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« Reply #12 on: October 23, 2008, 11:56:58 AM »
 :welcomesign; sweet T.
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
paul.karen
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« Reply #13 on: October 23, 2008, 12:13:25 PM »
 :waving;   :welcomesign;

Wow what a heartbreaking read that was :-(


But congrats on your engagement  :2thumbsup; :clap;.

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
TynyWonder
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Calvin
« Reply #14 on: October 23, 2008, 12:18:53 PM »
 :welcomesign; to IHD *T*  You sound like a really neat person that I am sure everyone is going to enjoy getting to know better!  Congrats on your engagement!!!!   :clap;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
Brightsky69
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« Reply #15 on: October 23, 2008, 01:01:53 PM »
 :waving;  Welcome T,

Wow....no sign of a transplant. Give it a few years and maybe they will figure out a way to make a transplant work for you.

I was 21 when my kidneys failed. My transplant lasted for a little over 17 years. Now I am back on dialysis. We are here for you!   :cuddle;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
Zach
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"Still crazy after all these years."
« Reply #16 on: October 23, 2008, 01:07:54 PM »
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."
boxman55
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« Reply #17 on: October 23, 2008, 03:43:10 PM »
Hi T welcome to IHD we look forward to your posts

Boxman, Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
Jess21
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WWW
« Reply #18 on: October 23, 2008, 04:28:14 PM »
 :welcomesign; :welcomesign; :welcomesign; :welcomesign;
Hi!  I was just 21 when I found out I had ESRD.  Now, I'm going to be 22 tomorrow.  This is a great site!!
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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)
thegrammalady
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« Reply #19 on: October 23, 2008, 04:31:41 PM »
:welcomesign;  this is a fantastic place to land. read, post and make friends. find answers to questions, rant, rave and let it all out. we all understand.
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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.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
TynyWonder
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Calvin
« Reply #20 on: October 23, 2008, 04:48:17 PM »
Quote from: Jess21 on October 23, 2008, 04:28:14 PM
:welcomesign; :welcomesign; :welcomesign; :welcomesign;
Hi!  I was just 21 when I found out I had ESRD.  Now, I'm going to be 22 tomorrow.  This is a great site!!

 :birthday; :birthday; :birthday; :birthday; Jess!!!!!!   We have birthdays in the same month!   My birthday is the 29th but I will be 39!     ::)  Oh, to be 22 again!!!    :bandance;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
jwaynebo
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« Reply #21 on: October 23, 2008, 05:17:19 PM »
 :welcomesign;
I hope someday you will be able to get a transplant, but for now welcome aboard. :grouphug;
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
jwaynebo
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« Reply #22 on: October 23, 2008, 05:18:50 PM »
One more thing, Congratulations on your engagement.  :bestwishes;
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
devon
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« Reply #23 on: October 24, 2008, 06:20:36 AM »
Welcome!

-Devon
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

WWW
« Reply #24 on: October 24, 2008, 08:33:54 PM »
Welcome to our community!  As you have seen, this is just the place for anyone facing what you are facing.  here you have found a genuine family  :grouphug; -  lots of caring and sharing people, loads of information, much support, and even barrels of fun (check the Off-topic section!).  Above all, as some of the others have said, a place where you can rant, and rage, and vent, and rave whenever you need to, knowing that we really UNDERSTAND!  So keep reading and keep posting.
Looking forward to hearing from you.. :flower;



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;
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