I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: ulrika on April 20, 2006, 09:33:50 PM

Title: Hello! I am very glad to have found this site.
Post by: ulrika on April 20, 2006, 09:33:50 PM
I am here because my daughter was diagnosed with chronic kidney failure in November/05.
Her doctor had ordered a cat scan because the pattern of her migraines had changed.
Since the beginning of 05, the radiology department at our local hospital demand a blood test before a cat scan is done, to check the creatinin levels, because the dyes they inject can be fatal for someone with kidney failure.
My daughter was all prepared for the injection, and was very surprised when they took the scan without it.
When she asked why they did not use the dye, the radiologist asked her discretely if she had any organ problems. When she said no, he told her to see her doctor right away.
When she saw the doctor, he thought that she had come for the results of her cat scan. He had missed the results of the blood test. When my daughter reminded him to look at them, he almost fainted, as her creatinin level was at 363 (13%).
The next day we saw a specialist, who told her that she would need to go on dialysis, and that the sooner she could get a transplant, the better.
She got her fistula in January, and tomorrow she is having the surgery to allow access for PD.
I am a match for her transplant, however they are a bit concerned because I have slightly elevated blood pressure, although it is under control with medication. Hopefully they won't decline me as a donor.Otherwise she may have to wait between 8-10 years for a cadaver kidney. She is a blood type O+.
My daughter is 37 years old, and a single mother of a 13 year old girl. Her kidney disease came as big
shock to us all.
The new diet is very confusing as so much of it is opposite to the way we have learned to eat. Her potasium levels were so high a couple of months ago, that the doctor was worried about her going into a cardiac arrest.
I am very happy we found this site, because you all know what we are worried about. There seem to be so little knowledge about kidney disease out there.
I hope to get to know you all.  :)
Hugs, Ulrika
Title: Re: Hello! I am very glad to have found this site.
Post by: Rerun on April 20, 2006, 09:53:07 PM
Welcome Ulrika,

Your story is very familiar with a few different twits.  My diagnosis was also a surprise requiring immediate dialysis everyday for 5 days straight in order to get my electrolites back in some sort of order.  It is very hard to face this disease.  It is hard on the family as well as the patient.  Just start reading through the threads and posts and you will learn a lot.  Ask anything and we will try to help you find an answer. 

Yes, the diet is opposite of what we are taught.  Beginning with "don't drink fluid" whereas we learned 8 to 10 glasses a day is good. :)

Title: Re: Hello! I am very glad to have found this site.
Post by: Epoman on April 20, 2006, 10:20:53 PM
Hello and welcome to the site, I hope your daughter joins us as well. Please ask us any questions you want or what I recommend is that you read EVERY thread on this site to get a better understanding of what you need to know to protect your daughter. An informed patient is a healthy patient. Your daughter has a rough road ahead but she will pull through. Remember we are the only (dialysis) site on the internet that will allow members to rant and vent without being edited or deleted. Bottomline is dialysis sucks but we do it to survive.

Welcome once again and stay informed.

- Epoman
Admin/Owner
Title: Re: Hello! I am very glad to have found this site.
Post by: Naggy6 on April 21, 2006, 06:42:04 AM
Welcome Ulrika

I love this site and am also glad I found it. I had been dealing with dialysis for a long time since 1985 and I was pretty informed but I still found new information when I found this site.

Good luck to you and your daughter, I think one of the most important things is that if you have questions for your Dr. don't be afraid to ask him/her.  and make sure they explain them to you in a way you can understand them and not just give you a bunch medical mambo jumbo.

The other thing is your granddaughter will probably be fine about it as long as things are explained to her. Kids are very resilient and understanding.
Title: Re: Hello! I am very glad to have found this site.
Post by: Bajanne on April 23, 2006, 10:05:04 AM
Welcome!  I was touched reading your daughter's experience.  I am so glad you have found this site.  I can't begin to tell you what it meant to me.  I found it just as I started dialysis and it has been a real help.  As Epoman says, the thing to do is read through all the posts, especially  General Discussion and FAQ Frequently Asked Questions.  There is so much information there that you don't get from the 'experts'!
I wish you three - daughter, granddaughter and you, all the best.