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Old 02-05-2013, 06:51 PM   #1
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CKD Stage 4

Hi I recently found out my mom has Stage 4 CKD from years of taking lithium with GFR of 16. They are considering transplant or dialysis and unsure just how long it will remain at 16. Any advice or suggestions? Any health adjustments she can make to her diet (she's limited potassium). Appreciate any and all suggestions! We're all just sad and fearful of the unknown.

 
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Old 02-05-2013, 07:08 PM   #2
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Cora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB User
Re: CKD Stage 4

First off, let me tell you that no matter what happens (dialysis first or transplant), nothing is ever as bad as you think it's going to be. Check with the renal dietitian to find out if she needs to limit protein and phosphorus too (you can tell this from the blood work).

While she is not overloaded with fluid and still urinating, it is still good to keep hydrated. If there is a lot of excess fluid on board (swollen ankles, hands, and face) then limiting might be a good idea. Also cutting back on sodium is very important

Has she been seen regularly by a nephrologist? In the meantime, get her on the transplant list. Life expectancy is much greater with this form of treatment and it is much easier to take pills than it is to make time for dialysis. Also it's easier on your system.

I was predialysis for over 20 years, on hemodialysis for 1, and have now had my transplant for more than a decade. Feel free to ask lots of questions.
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Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

 
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Old 02-05-2013, 07:25 PM   #3
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Re: CKD Stage 4

Thank you for your reply!! I so appreciate your wisdom and knowledge!!!

She has been to a dietitian and is limiting phosphorus and sodium too (not sure about the protein, but rarely eats meat anyway). She has always been super healthy and has no symptoms other than trouble sleeping, tiredness. I've always known her to drink a lot of water yet she's always thirsty!

She has a number of doctors she has been going to, but without health insurance she tries to be cautious about going unless necessary. My dad and I have both offered to give her a kidney if she needs a donor and she is not on a transplant list.

As I talk with my parents I know many more questions will come up and I really am thankful to be able to have you as a resource as someone who has gone through this!

Is there a set time or level where they decide a transplant must be done?
What all is involved with a transplant for both the recipient and donor?
Any helpful resources, articles, videos, books that are a must read for educating oneself on the topic?

Thank you for being you and taking the time to help others like me who feel so lost, helpless and confused.

 
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