Hello everyone;
I am back, thanks to a generous sponsor, whom I would like to thank from the bottom of my heart.
A lot has happened since I first posted about my daughters tragic diagnosis back in nov.
http://www.commongroundcommonsense.org/for...topic=43492&hl=

This has been a fast track learning experience, that has put my daughter through hell.
As I was rejected as a donor, due to high bp, and no one else is a match, I am now reaching out in any way I can.
Although I am technically challanged, I thought the best way to reach others, would be through the internet, and have created a blog for the purpose of finding a kidney for Sandra.
She is a type 0 blood type, and is therefore, the most difficult to find a match for.
Type 0, is a universal donor, however, a type 0 can only recieve from another 0.
I ask you to visit my blog, and get the word out. There is a guestbook on the lower left side on the blog, and there is also a place for comments. I would love if you let me know you dropped in.
This quest has become a full time job for me.

http://kidneytransplantforkyliesmom.blogspot.com/

Shouldn't this be pinned on online cafe (or at least a copy of it)? This is something where the number of people who see it can make a real difference.

I visited. I pray your effort succeeds. I will tell my friends about your blog.

I sort of did this, Tom.

Thank you soo much

Best of luck, Ulrika.
We can all post your link on other good forums we visit, too-
or blogs that members have or visit.

Ulrika, I am so sorry to hear about your daughter's illness ! I missed it when you posted before I guess.

I am praying for you to find the strength you need, and for your daughter as well.

I have been thinking of you often lately and wondering why I hadn't seen you around. Now I know why.

If you need a shoulder .. you have my email. I make a very good listener.

I wish so much I could do more.

Betty

I am sorry that you are going through this. I will pass the word and I hope that you find a donor soon. My prayers are with you.

I thank you all for your support, and kind words.
Today we are off to the hospital, for another week. It takes training to do home dialysis. The risk for peritonitis is very high, and most people on peritoneal dialysis ends up with it sooner or later. When she is doing her exchanges, eveyone in the room has to wear a mask.
I will try to be on a computer as often as I can during thist time, because I don't want my blog to die due to inactivity.

can't you get your bp down? why?

It is under control with the help of very little medication. However, they feel that with only one kidney left it could get uncontrolable. I have pleaded with them to make an exception, but they refuse.

I've just sent the link to people I felt would send it further and cast a wider net for the right person. I hope and pray this works out well. I wish you the best in your search and think you're a really cool mom to come up with a blog to get the word out.

Thanks for your support.
You would do the same thing if it were your child. I am so new at blogging so I don't know what I am doing half of the time.
We got back today after 4 days of training in peritoneal home dialysis. The training is usually for 5 days, but we are fast learners, and blond .
Sandra has to do 4 exchanges per day....filling her abdominal cavity with 2 liters of fluid (4 quarts) through a catheter in her stomach. It has to dwell for 4 hrs., then she has to drain it, and refill. She will always have 2 liters of fluid in her belly. Every exchange has to be according to meticulous instructions, including, everyone in the room has to wear a mask. She is very lucky that she can do her dialysis at home. although it is a huge adjustment.
The sooner she can have a transplant, the sooner her quality of life will improve.

Yes, I know what it is to be a mom. You'll do ANYTHING for your child. I tell mine that it's in the programming. It is probably because we love them unconditionally and open our hearts in a way that we never do with anyone else. Not to that extent.

I can't imagine having to go through this every day. I know someone who has had a catheter in his stomach recently for several weeks, and I was told that every time he moves this thing hurts. It is a different illness, but this was part of the procedure for his recovery.

Your daughter probably handles it better than you because as moms we mentally endure everything that our children do. I just pray that help comes soon for you as we send out letters letting people know about your situation.

You are so right, Sandra is a trooper. My heart breaks for her. I can't tell you how many times I have prayed for it to be me, instead of her.
For those who are interested, I am trying to post an update on my blog every day on what it is like to live with dialysis.
http://kidneytransplantforkyliesmom.blogspot.com/

If anyone on this board is on dialysis, I would deeply appreciate if you could pm me, and share your experience. I promise to keep it confidential.

Hugs...

anything new on the hunt for a kidney Ulrika ?

And how is your daughter doing ?

I have always thought "O" was the most common blood type . Am I wrong ?

I'm O Negative but for health reasons they wouldn't even consider me as a donor.

I do know I always give blood because of the fact that O is the universal blood type.

You and your daughter are in my prayers.

Hi CO;
Sandra is adjusting to her new lifestyle, although it is hard because she is so young. She is also grateful that there are means to sustain her life, which is a lot more difficult with any other organ than the kidney.
I am happy to say that 2 people are currently being tested. It is a long process, it can take up to 9 months. There are so many factors that play into it. It always have to start out with a blood match, but then there is tissue matching to make sure the new organ is not rejected. The donor's health is of utmost importance, to make sure that he/she can live with only one kidney for the rest of their life.
As type O, we can donate to any other blood type, however, we can only accept from another O. For example, if there is someone with type A+ ahead of Sandra on the list, and an O donor comes up, the A+ will get the organ. But even though Sandra would be next on the list, unless the next donor is an O, Sandra will lose her turn to a person who is a match for that donor.
We have learned so much on this new journey.
Thank you Betty, for your thoughts and prayers.
Christina

http://kidneytransplantforkyliesmom.blogspot.com/

It is good to hear your daughter is doing the best she can under difficult circumstances, and I know I speak for all of us at CGCS when I wish Sandra, you and all of your extended family the best. I am sure the strength of that family will also get her through to her goal of an excepted Kidney.

Thanks Real Democrat