I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: DKlatt on August 07, 2011, 03:37:43 PM
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My name is Dorrie and I'm here because my 25 year old neice has been diagnosed with a kidney disease. It's been overwhelming in a multitude of ways (nothing new to you all) and I'm just trying to read and learn all I can. From what I've read so far (with the understanding I've only read a little), two of the biggest struggles seem to be the diet restrictions and dealing with them on an everday basis; and staying positive and keeping the faith. I know that's where we are at.... I look forward to meeting everyone and I'm very glad to have found this site....take care everyone
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Welcome to you, and welcome to your niece! It would be great if perhaps she could join us, too. She could give us more clinical information about which kidney disease is afflicting her and if she is close to needing dialysis. I know we can be of great help to you, to her and to all who love her. Please feel free to post any specific questions either of you may have.
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Thankyou for those kind words. They are telling us it's glomerular disease with some rheumatoid arthritis and anemia thrown in for good measure. My niece has always struggled with a low immune system and had two collasped lungs at 16 and 18 which they really never were able to pinpoint the cause.
She is on various medications and gets hemodialysis on an "as needed" basis at this point. I'm gathering that diet is such an incredibly important factor, and I understand the restrictions are necessary, but it's just crazy..... I guess coming up with a weekly menu is the best way to approach it? Any thoughts on preparing and freezing meals? I can't magically fix her kidneys, but if I could help, somehow, I will.....even though I'm not much of a cook...
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I am assuming she gets her dialysis at a clinic. The clinic should have a renal dietician who specializes in dietary advice for people who are pre-dialysis and who are on dialysis. A lot of the restrictions depend upon certain lab results. The main things to watch out for are foods high in potassium and high in phosphorus. If you live close by, I'd suggest you call the clinic and see if you and your niece could set up an appointment with the renal dietician for help in devising a diet for the specific needs for you niece.
There are also many sites on the internet that have menu ideas for people dialysis. Davita's website is pretty good for this purpose.
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Welcome to IHD DKlatt. I'm sorry your niece is going through this difficult time. She is fortunate to have an Aunt who cares. Please do encourage her to join us also.
:welcomesign;
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:welcomesign;
We've got a whole section on diet and recipes. Lots of good info. The first and most important thing you need to know about her diet is this: Anyone who says she can't EVER have something again is full of BS. With good planning and consideration for her individual lab results, she can have anything she wants in moderation. (The only exception to that rule is starfruit - which has a neurotoxin that isn't cleared from the body if the kidneys aren't working well!)
The diet is a balancing act to keep the levels of potassium, phosphorus, calcium, and even sodium in a good balance - things that healthy kidneys can do without such an effort with diet. You can learn to cook ahead for her so she has healthy choices ready and waiting!
If you haven't found your way there already, you might want to check out www.kidneyschool.org. Lots of good info in their learning modules, if you are coming at this from the very beginning.
As for staying positive - sounds like she's one step ahead already with you there to help her out!
jbeany, Moderator
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:welcomesign;
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:welcomesign; Dorrie, and a big welcome to your niece too!
;D
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Welcome Dorrie! Sorry about your niece! She is lucky to have you in her corner! You have come to the right place! Lots of good knowledgable people on this site. I am certainly blessed to have found it!
God Bless you and your niece, :flower;
lmunchkin :kickstart;
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Thank you all for such a warm welcome! I really can't express how much it means and I'm looking forward to spending more time on here with all you good people...... have a blessed day!!
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:welcomesign;
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Hi Dorrie and welcome to IHD. I'm so gald you found us. You are the best Aunt ever. It takes a lot of energy to delve into renal failure and the ins and outs of it. Very good of you to do this for her.
Post often.........
Rerun, Moderator :welcomesign;
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:waving; Welcome. It may seem early but I think it's never too soon to ask what her GFR is - and what the hospital requires to get listed and see if there are any living donors to be evaluated. Pre-emptive transplants are becoming more and more common.
Thanks for joining and best wishes to your family!
:welcomesign;
okarol/admin