I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
June 25, 2017, 10:20:48 AM

Login with username, password and session length
Search:     Advanced search
513057 Posts in 32010 Topics by 11515 Members
Latest Member: Tinked0812
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Introduction
| |-+  Introduce Yourself (Moderator: Rerun)
| | |-+  We meet again
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: We meet again  (Read 665 times)
librajenn2
Premium Member
Newbie
*
Offline Offline

Gender: Female
Posts: 9


« on: January 20, 2017, 06:09:51 AM »

Hi everyone!
I joined this board way back in 2008 when I was first diagnosed at stage 2 CKD. Unfortunately in recent months I am down to 23% kidney function, and getting close to dialysis and hopefully being tested for transplant. Wanted to re-connect. I am 34 years old and I now live in NC with my husband, and two children. My Mom is 10 years (this year) post transplant and is doing well. She was once very active here as well (Sandyb, Slywalker). I guess mostly I'm just scared and need some people who get it. At this point I have not been given any diet changes, and am just on medication to control BP.
Logged

"Live with intention, walk to the edge, listen hard. Practice wellness, play with abandon, laugh. Choose with no regret, continue to learn, appreciate your friends. Do what you love... live as if this is all there is."
~mary anne radmacher
cassandra
Global Moderator/Premium Member
Elite Member
*
Offline Offline

Gender: Female
Posts: 3930


When all else fails run in circles, shout loudly

« Reply #1 on: January 20, 2017, 06:15:49 AM »

Welcome back to the site then Librajenn2

   :welcomesign;


Take care, Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
DayaraLee
Premium Member
Full Member
*
Offline Offline

Gender: Female
Posts: 237


« Reply #2 on: January 20, 2017, 06:30:57 AM »

Sorry you had to return under these circumstances, Librajenn2. But glad you found your way back. 
 :welcomesign;
Logged

My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1335


« Reply #3 on: January 20, 2017, 06:41:27 AM »

Welcome.  My advise on starting is let your nephrologist  worry about your numbers,my nephrologist wanted me to start two years before I actually started.  What I did was modify my diet to eat non processed food.  One day in work after a particularly good lunch I got very sick and tossed my lunch.  But I got two more dialysis free years which I absolutely enjoyed.  One thing to do is get a fistula created so it's ready if you need it.  Even if you choose pd it's good to have a backup.








sp mod Cas
« Last Edit: January 20, 2017, 02:22:32 PM by cassandra » Logged
kickingandscreaming
Premium Member
Elite Member
*
Offline Offline

Gender: Female
Posts: 1615


« Reply #4 on: January 20, 2017, 02:13:56 PM »

Welcome.  Sorry you have to be here again.  23% function is pretty good (relatively speaking) and could stay in a good place for several years.  I waited until I was at 6% when a case of pneumonia threw me over the edge and I had to start dialysis (PD).  Stable is what you want at this point.  I hope you stay in decent range for a while.  In the meantime, there's a lot of support to be had here at IHD.
Logged

Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
MooseMom
Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 9762


« Reply #5 on: January 20, 2017, 02:37:50 PM »

What she said.  ^^^^^^^^^^^^^^

 :grouphug;
Logged

"Empathy is the soul of democracy."  Jeremy Rifkin
okarol
Global Moderator/Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 100811


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #6 on: January 20, 2017, 08:00:46 PM »

Hi librajenn2,
Sorry your kidney function has declined but glad you had nearly 9 years until you need to think about what may come next.
They used to say "fistula first" but more and more I am hearing "transplant first." Avoiding dialysis altogether is possible if you find a living donor. Once you're at 20% function you can get evaluated for a preemptive transplant.
I have a kidney donor search page for Jenna on facebook. We have met many potential donors, but she has 100% antibodies now so finding a match has been difficult.
If you want to set up a page I am happy to help you.
How old are your kids? Very happy to hear your mom is still doing well.
Take care,
Karol
 :waving;
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
MooseMom
Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 9762


« Reply #7 on: January 20, 2017, 09:12:58 PM »

What a kind offer, okarol.   :thumbup;
Logged

"Empathy is the soul of democracy."  Jeremy Rifkin
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 5919


« Reply #8 on: January 20, 2017, 11:27:19 PM »

Hi, and welcome back to IHD. You and I are neck and neck together. My GFR goes 18, 23,24,22, and so on.And I also joined in 2008, january or Feb or so, yeah we are neck and neck. Hope you can continue to stay in stage 4 and me too Honey,me too.
Logged

One day at a time, thats all I can do.
Charlie B53
Global Moderator
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2341


« Reply #9 on: January 21, 2017, 04:48:58 PM »


I am surprised how your function can yo-yo up and down like that.

Mine was a steady decline, no ups.    There is an awful lot about kidneys that isn't yet very well understood.  It least not by me!
Logged
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 5919


« Reply #10 on: January 21, 2017, 05:53:31 PM »

 I know Charlie. It surprised me too when it went down to 18 ( read terrified) but      2 months later. back to my normal in the low 20's. When my CKD was discovered it was 29 and here, 9 years later only in the low 20's. I will not cry if it stays there another 9 years!!!
Logged

One day at a time, thats all I can do.
librajenn2
Premium Member
Newbie
*
Offline Offline

Gender: Female
Posts: 9


« Reply #11 on: January 23, 2017, 05:57:14 AM »

Welcome.  My advise on starting is let your nephrologist  worry about your numbers,my nephrologist wanted me to start two years before I actually started.  What I did was modify my diet to eat non processed food.  One day in work after a particularly good lunch I got very sick and tossed my lunch.  But I got two more dialysis free years which I absolutely enjoyed.  One thing to do is get a fistula created so it's ready if you need it.  Even if you choose pd it's good to have a backup.


Thank you! I have done a similar thing with my diet, hoping to preserve what I have!





sp mod Cas
Logged

"Live with intention, walk to the edge, listen hard. Practice wellness, play with abandon, laugh. Choose with no regret, continue to learn, appreciate your friends. Do what you love... live as if this is all there is."
~mary anne radmacher
librajenn2
Premium Member
Newbie
*
Offline Offline

Gender: Female
Posts: 9


« Reply #12 on: January 23, 2017, 06:00:30 AM »

Hi librajenn2,
Sorry your kidney function has declined but glad you had nearly 9 years until you need to think about what may come next.
They used to say "fistula first" but more and more I am hearing "transplant first." Avoiding dialysis altogether is possible if you find a living donor. Once you're at 20% function you can get evaluated for a preemptive transplant.
I have a kidney donor search page for Jenna on facebook. We have met many potential donors, but she has 100% antibodies now so finding a match has been difficult.
If you want to set up a page I am happy to help you.
How old are your kids? Very happy to hear your mom is still doing well.
Take care,
Karol
 :waving;

Hi! Do you know if insurance (Medicare specifically, right now I don't have insurance) pays for pre-emptive testing for living donors? Thanks for your offer to help with FB, I will keep you posted when it comes time to look at that. I have so many mixed feelings about the living donor process, specifically because both  my mother and her living donor (my best friend) nearly died in the process. I think I have PTSD! Our kids are 4 and 15. we actually are foster parents and have adopted them both out of the foster care system. Thanks again!!
Logged

"Live with intention, walk to the edge, listen hard. Practice wellness, play with abandon, laugh. Choose with no regret, continue to learn, appreciate your friends. Do what you love... live as if this is all there is."
~mary anne radmacher
librajenn2
Premium Member
Newbie
*
Offline Offline

Gender: Female
Posts: 9


« Reply #13 on: January 23, 2017, 06:01:38 AM »

Hi, and welcome back to IHD. You and I are neck and neck together. My GFR goes 18, 23,24,22, and so on.And I also joined in 2008, january or Feb or so, yeah we are neck and neck. Hope you can continue to stay in stage 4 and me too Honey,me too.

Thanks! Fingers crossed for both of us <3
Logged

"Live with intention, walk to the edge, listen hard. Practice wellness, play with abandon, laugh. Choose with no regret, continue to learn, appreciate your friends. Do what you love... live as if this is all there is."
~mary anne radmacher
Vt Big Rig
Global Moderator/Premium Member
Full Member
*
Offline Offline

Gender: Male
Posts: 471

« Reply #14 on: February 01, 2017, 10:17:46 AM »

Welcome back to the site. Sorry you had to come back
Logged

VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
okarol
Global Moderator/Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 100811


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #15 on: February 02, 2017, 11:47:46 AM »

Hi librajenn2,
Sorry your kidney function has declined but glad you had nearly 9 years until you need to think about what may come next.
They used to say "fistula first" but more and more I am hearing "transplant first." Avoiding dialysis altogether is possible if you find a living donor. Once you're at 20% function you can get evaluated for a preemptive transplant.
I have a kidney donor search page for Jenna on facebook. We have met many potential donors, but she has 100% antibodies now so finding a match has been difficult.
If you want to set up a page I am happy to help you.
How old are your kids? Very happy to hear your mom is still doing well.
Take care,
Karol
 :waving;

Hi! Do you know if insurance (Medicare specifically, right now I don't have insurance) pays for pre-emptive testing for living donors? Thanks for your offer to help with FB, I will keep you posted when it comes time to look at that. I have so many mixed feelings about the living donor process, specifically because both  my mother and her living donor (my best friend) nearly died in the process. I think I have PTSD! Our kids are 4 and 15. we actually are foster parents and have adopted them both out of the foster care system. Thanks again!!

I believe Medicare covers it but that's a good question for the transplant coordinator at your center. You have to be evaluated first, then they will test potential donors.
 
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.5 | SMF © 2013, Simple Machines
Enotify by CreateAForum.com
Valid XHTML 1.0! Valid CSS!