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Author Topic: Hello everybody  (Read 3590 times)
esperanza1
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« on: August 28, 2008, 08:14:29 AM »
Hi
I"ve been visiting this website for the longest.  It has been very helpful to me, so I decided to participate.  I'm 33 years old. I've been diagnosed with FSGS for about 10 years.  My kidney function is at 30.  My nephrologist has told me that when I get to 20 I need to get in the transplant list.  I'm still in shock.  I've been feeling quite ok. 

thank you guys for being there for people with kidney disease
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willieandwinnie
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« Reply #1 on: August 28, 2008, 08:23:30 AM »
:welcomesign; esperanza1. Glad you came out of lurking to join us. We have bunches of information and the greatest support you'll find.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
peleroja
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I have 16 hats, all the same style!
« Reply #2 on: August 28, 2008, 08:27:02 AM »
Welcome, Esperanza!  I'm not familiar with FSGS, what is it?  Lots of good info here; hope you find everything you need.
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esperanza1
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« Reply #3 on: August 28, 2008, 08:43:29 AM »
Quote from: peleroja on August 28, 2008, 08:27:02 AM
Welcome, Esperanza!  I'm not familiar with FSGS, what is it?  Lots of good info here; hope you find everything you need.

Focal Segmental Glumerolosclerosis.  Basically, scars in the kidney.  A lot of protein spill.
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monrein
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Might as well smile
« Reply #4 on: August 28, 2008, 09:12:58 AM »
 :welcomesign;
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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
Romona
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« Reply #5 on: August 28, 2008, 09:16:41 AM »
 :welcomesign;
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Zach
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"Still crazy after all these years."
« Reply #6 on: August 28, 2008, 09:18:18 AM »
Welcome to our 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."
keith
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« Reply #7 on: August 28, 2008, 09:23:11 AM »
 :welcomesign;
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Life ain't Life wit out Me!!! U Heard Me  
Transplanted on 12-6-2007 on dialysis7+yrs
Started Dover dialysis support group. A group for patients, familyand friends.
NOW RUN-Tel-Dat
annabanana
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« Reply #8 on: August 28, 2008, 10:23:48 AM »
 :welcomesign;   :welcomesign;
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

WWW
« Reply #9 on: August 28, 2008, 11:03:49 AM »
Welcome to our community!  I love welcoming lurkers.  You know that they already appreciate IHD, or they would remain lurkers!  So I don't have to explain anything or try to convince you - just tell you 'WELCOME TO THE IHD FAMILY!' :grouphug;
Looking forward to hearing more 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;
cookie2008
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« Reply #10 on: August 28, 2008, 11:16:47 AM »
 :welcomesign;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
paris
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« Reply #11 on: August 28, 2008, 12:02:44 PM »
 :welcomesign;    So glad you decided to join us.  There are many of us here with FSGS.  Some pre-dialysis, on dialysis and with transplants, so there are many people to gain information from.   I was diagnosed with FSGS 4 years ago @ 30%. They told me in would be on dialysis in 6 to 12 months. I am @ 14% and still holding off dialysis.  I follow a renal diet (most of the time), started taking much better care of myself and found a neph I can work with.  I hope you continue at the function you are at for quite some time.  I give a lot of credit to the members here for giving me the power to take more control of my life.  I hope we can be of some help to you, too.  Looking forward to reading more of your posts.   Welcome to the best site!





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.
Joe Paul
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« Reply #12 on: August 28, 2008, 12:37:57 PM »
Welcome Esperanza, 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
boxman55
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« Reply #13 on: August 28, 2008, 02:05:31 PM »
Hi Esperanza, we knew you where lurking and placed bets on when you would join. We all are so glad to have you aboard. Stick around and have a little fun. I am kidding about the bets...

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
Ang
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« Reply #14 on: August 28, 2008, 06:03:11 PM »
 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
RichardMEL
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« Reply #15 on: August 28, 2008, 06:25:49 PM »
G'day Esperanza,

I was in a similar position to you - FSGS that was diagnosed 13 years before I eventually had to start dialysis. You are in a different position to me. Down here we don't get on the transplant list until we START dialysis, so you may very well get the option of a transplant before you are forced to start dialysis, which is a very good thing (should you wish to go down that path). I can understand being in shock! When I was first diagnosed in 1993 the first neph I went to basically sat me down in his office and the first thing he said was "You've got 2 years" - and it wasn't even clear what he was saying I had 2 years till? Till dialysis? till death do us part? till what... anyway we ditched him because he was a jerk and got to a much more senior fellow, and well I proved that initial bloke wrong since I'm still going strong 15 years later :) Well OK with the aid of dialysis now.

I think, though, you have warning and with a GFR of 30, you have some time to go till you will be forced onto dialysis... this is similar to me. I could plan to do things *I* wanted, and try and live as much as I could. This is what I would suggest to you - travel... get out... LIVE!!! Not that dialysis is going to ruin your life, but when you get there (if!) it will definitely cramp your style (and no, that's not meant to be a pun!).

Either way please join in our community! I am sure we can help you handle all the things you need to get a grip on and prepare more for what lies down the track.

 :welcomesign;
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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!
G-Ma
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« Reply #16 on: August 28, 2008, 07:07:04 PM »
 :welcomesign;
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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
Kini
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" Just keep Swimming "
« Reply #17 on: August 29, 2008, 05:34:08 AM »
 :welcomesign;   :cuddle;
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Mother of daughter on PD dialysis. Transplanted 1991, dialysis June 2003, transplanted 2004 this transplant never took, still on PD and waiting 5 yrs. and when the gift of life is once again never shall we be tied down, look out Hawaii we are coming back !! it's my daughter's dream.
RobinM
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« Reply #18 on: August 29, 2008, 04:09:14 PM »

Hi Esperanza! :welcomesign;

Robin
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kitkatz
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« Reply #19 on: August 31, 2008, 09:07:41 PM »
Welcome to the forums.  Good to see you here.  Ask your questions to get informed so you can deal with the medical establishment in your care.




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
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