We meet again

[librajenn2]

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.

[cassandra]

Welcome back to the site then Librajenn2

   


Take care, Cas

[DayaraLee]

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

[Michael Murphy]

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

[kickingandscreaming]

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.

[MooseMom]

What she said.  ^^^^^^^^^^^^^^

 

[okarol]

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
 

[MooseMom]

What a kind offer, okarol.   

[Jean]

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.

[Charlie B53]

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!

[Jean]

 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!!!

[librajenn2]

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

[librajenn2]

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
 

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!!

[librajenn2]

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

[Vt Big Rig]

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

[okarol]

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
 

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.