I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: kristina on February 16, 2009, 03:43:14 PM
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Quote from: kristina
Dear friends, could please anyone exchange experiences with me? I have just been told I am in end-stage-renal failure, my Creatinine is 436, Urea 18.3 and I would like to know how long I have until dialysis has to be started? Days? Weeks? does anyone know of ways how to slow down the process? My weight is normal, I don't smoke, don't drink, I eat vegetarian and try to slow the process as much as possible. Does anyone know some tricks how to slow down the process and keep kidneys working for as long as possible> I am totally frightened. Am I alone in this? How are your experiences? Please answer to Kristina, e-mail: schmidt56@yahoo.co.uk
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One thing is for sure:
YOU ARE NOT ALONE!!
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Kristina, this is an impossible question to answer because it varies so much from person to person. I started dialysis when my numbers were lower than yours, many started later. It comes down to just how awful are you feeling.
When you are this stage, pre-dialysis, you want to be careful to not eat too much protein, limit salt as much as you can, avoid processed foods and be careful of dairy and other high phosphorus foods. If you are vegetarian you need to be careful of beans (high in phos) and you may need to watch potassium too. Eggs and egg whites are a very good source of protein for pre-dialysis.
Are you going to be doing hemodialysis? or peritoneal? Do you know yet? Have you had a fistula surgery yet? Do you know your blood phosphate levels? or your potassium.
I suggest that you start by reading the posts here on the forum and you can do a search also of things you want to know. So search for "pre-dialysis diet" or "when to start dialysis" and keep at it because we discuss these issues all the time and there's lots of info here.
Welcome to our community and feel free to ask any questions but do some reading first of what is already here. :cuddle;
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:welcomesign; kristina. You have found the perfect place. Loads of information and the greatest support. Hope we hear more from you. :cuddle;
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Not too long ago an article was posted concerning research aimed at better predicting the trajectory of ESRD. Here's the link:
http://ihatedialysis.com/forum/index.php?topic=11958
IHD is packed with information about ESRD and the experiences of individual members. Try going to the home page and searching on specific topics. You'll find that many threads focus on diet, for example. Hopefully you will find them helpful.
In another thread: http://ihatedialysis.com/forum/index.php?topic=11791.msg201042#msg201042 (http://ihatedialysis.com/forum/index.php?topic=11791.msg201042#msg201042) not too long ago, we discussed creatinine levels in SI units (not used in US). Based on the numbers Draven cited in that thread, it sounds like you might have about 50% of your kidney function remaining. Does that sound correct?
Try reading a bit and then posting your questions in the forums. You will get answers and the support you need here at IHD. :cuddle;
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Kristina knowledge is power. Learn all you can about your disease and own it. The more you know the better you will be able to handle what comes your way. Come on here and read and also some of the other sites like www.davita.com
:welcomesign;
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:welcomesign;
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:waving;
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Welcome Kristina, good to have you aboard.
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:welcomesign; aboard Kristy
To answer the questions you have asked you really need to speak to your specialist, however we will support and help you along with it as well.
:ausflag; :ausflag; :waving; :waving;
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Hi Kristy
Just received you message. Unfortunately there is no tricks to slow the rate of the damage of the kidney that I am aware of.
Hope you will be able get the answers from them to the question you are asking.
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I agree there is not one thing that can tell you when you may start Dialysis. But you have come to a great place for information. :welcomesign;
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:welcomesign; kristy
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Welcome to IHD, please take the time to search and read the posts on this site. A lot of your questions can be answered
Boxman,Moderator
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Welcome to our community, Kristy! I understand exactly how you feel! However, I didn't have enough time between hearing I would have to go on dialysis and actually going. I found this website just as I was diagnosed. then in a few weeks time, my GFR had fallen so much that I had to start right away. But IHD was with me all the way and empowered me greatly. This is much more than a website - it is a genuine family. This is a great place to be for information, support and even fun.
Just keep reading and keep posting. Let us know how you are doing.
Looking forward to hearing from you :flower;
Bajanne, Moderator
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First let me say welcome, this is a wonderful place to be. Everyone here is so helpful. As for knowing how long it will take you never know. My father had a couple months and there are people who have gone a lot longer. It all depends on your body. Hang in there, and come back as often as you want and let us know your doing.
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:waving; Kristy
Glad you found us.
No your not alone
Hope to see you on many threads.
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Welcome Kristina!
I think the important thing is to not panic. Creat of under 500 is pretty good if you ask me :) (I'm between 900-1000). Do you know what your eGFR is? The thing is to trust in your docs that they will put you on appropriate meds to do what they can to slow the spread of the disease (and depending what it is that's causing the kidney disease it may be a slower moving or more acute version). Really what you need to do is discuss these issues with your neph who will know what is the best for your particular individual circumstance. It may be months off or even years so try not to panic just yet.
At any rate it's a big shock I'm sure but you've found a very supportive community here to help you through as best we can!
:grouphug; :grouphug; :grouphug;
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G'day and :welcomesign;
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:welcomesign; Kristina,
How are you feeling? My 14 year old started dialysis when her creatinine was 420, but she is tiny and weighed less than 80 lbs at the time. She was feeling miserable. My 18 year old currently has a creatinine of 420 and is feeling great! She is on the go constantly. She is 5'5" and weighs about 115 lbs. She takes Procrit or Epogen injections to help with the anemia. She has 20% kidney function and the doctors don't think her kidneys will last throughout the year. Become informed, knowledge is power and definitely helps alleviate fear.
I am new to this board, also. They are a wonderful support group. :grouphug; Lots of hugs.