Aloha

ALOHA to all. I was so happy to come across these boards. I am a mother and caregiver of my daugher whom is 26. She mentally Challanged but very midly, still she needs my guidace as she always has. I have been her biggest advocate for many years. When she was little I taught in her school district to be near her, when I transitioned her to adulthood, I developed a Vocational program in our county and I also ran for our local school board and won the seat which I feel I made a huge difference for all with any form of disablity. My daugher was only 2 months old when we found out about her kidney's. Never had a Reason, and Yes ALL test were done. The days and hours we have spent in hospital I can not even count. She had her one native kidney removed at 2 months old..... and since has been transplanted 2 x's. She received her first gift of life at 9 yrs of age, it was not easy to say the least. Back in 1991, it was Different still devloping and still to this day it grows. She had 12 WONDERFUL yrs. with her cadaver Kidney, for we never knew Dialysis she was transplant before it got to dialysis. And I wlll never forget her Pediatric Neph. say to me, you have no idea how easy it is to go from where she was at to transplant,, meaning we never KNEW dialysis, he was Right !!! 12 yrs. later JUST LIKE THAT,, Gone she lost the graft. She graduated high school in June of 2003 (

Being a school board director I was able to GIVE her, her diploma,, so SPECIAL ) but I had no idea that night she was loosing her gift. Then next day she laid on the couch SO VERY COLD and it was 85 here

i I thought she was tired from the festities and let it go but the next day MY GUT told me take her for blood work, ( we always had a standing order at our local hosp.) with in 2 hrs. her Neph. called me at work her creat. was 8.2 $:-\$ so off we went to the hosp. ( now keep in mind she had blood work only 3 wks before this and it was fine ) admitted to the hosp. she lost the graft. Dialysis was started,, we choose PD.

To make a long story short, a yr. went by and her sister decided to be checked after finding out on her own they had the same blood type. I never told my daugher because I did not want her to donate. She did this on her own and once she knew that was it, she was going to give her sister a kidney and would not hear anything from me,, she did it all on her own. She passed the eval. and the transplant took place. So much went WRONG from the beginning, so much but I can not go into that now. The whole transplant failed and I almost lost BOTH my girls. I spent that yr. taking one daughter off a machine after a long night, and getting up to get my donor daughter on another machine.. a true night mare of our lives, i spent many yrs so angry and hateful, bitter. It's been 4 yrs out now and still my daugher is on PD with many complictions, she is so tired after 5 yrs of dialysis and 2 transplants. She now has an PRA level of 93 % and is 0 +. She is reacting to the PD now and I wonder how much longer she can keep it, I just hate the thought of Hemo. She has 5 yrs on the wait list,and with a high PRA and her age I just pray someone is kind enough to leave the gift of life,, I wish I matched her, and her dad. We never match

and there is no other family member to ask,, and I have never asked anyone anyhow. I know I could reach out on the net but I also have an ethic issue to where to draw lines on living donors. So here I am and I hope I can gather any and all information on PD dialyisis. ALoha

Kini,
This all sounds very hard, and I'm so sorry you've had to go through all of this. I'm glad, though, that you have found your way to IHD. There are lots of wonderful people here, with tons of information and support. No matter how you're feeling on any given day, someone is sure to understand.

and keep posting!

Mahalo My friend. It 's such a peaceful feeling to know you never alone. I will always reach out for help in my hr. of needed support and I also hope with my knowlege of what we have faced give input too. again Mahalo

Welcome Kini.

Just know that there will always be someone here to lend an ear, give supportive advice, and kindness.

I would love to get to know you better, as my husband and I are planning a trip there next February...it would be great to meet some folks on here.

Welcome, Kini......don't hate the thought of hemo, it's not that bad

Aloha Kini,

You are an amazing mother

.
I am so glad you found a path to IHD.
Here, you will find love and support, for you deserve it.
Welcome,

love,
kelli

Kini. I'm so glad you found us too and hopefully we'll support and learn from one another. You've been through so much with your girls and how lucky they are to have you. Post often and I look forward to getting to know you.

Welcome to IHD Kini. Come right on in and make yourself at home.
There's always someone around to talk to.

Love, Mimi

hi Kini,

I am glad you joined IHD. You were one of the first people I communicated with when I wanted to donate a kidney to Jenna. I know you will meet some very supportive folks here.
Best wishes to you and your girls!

okarol/admin

You have sure been through a lot.

Aloha back Kini,

It's a pleasure to have you here and I can feel your emotions as I read your wonderful introduction. I'm sitting here wishing there was a better way to help your daughter. The sole purpose of this website (board) is for all of us associated with ESRD at some level, have a place to tell our story, rant when we feel like ranting, and learn from the information contained here. There is a lot of information here, and everyone here understands what you are feeling, and everything you have, and are going through. Feel free to browse and ask questions, and make some new friends. Here is a

for you and your daughter.

Sluff/Admin

You all have made me feel so welcome. It is nice to know you are never alone. HUGS to each and everyone.

Kini, welcome to the site

Boxman,Moderator

Welcome Kini!

You have found a great place for support, friendship, and many shoulders when you need it. Bless you for being so proactive in your daughter's life. I hope her gift comes quickly and without complications this time. Y'all will be in my prayers.

Your story is amazing and shows the extent of a Mother's love. I am glad you joined us. There is so much support here. I am sure you will also be a huge help to others going through the transplant journey.

for you and your girls.

It's great that you have joined IHD and thanks for the great introductions. Please visit often.

Kini

I have only been on this site a short time and have read alot of things and as a mother (thank God it is me and not my son) I can't imagine the strength and courage it must take to be where you are. I read it out loud to my husband and we both cried for you. Please know you will be in my thoughts and prayers. Good luck to you and your daughters. Please contact me or any of the wonderful people on this site if you want to talk. In God's time.

to IHD Kini. You have been through so much.

Welcome to IHD.com. There is a lot of support here for you. It sounds like you are living a really interesting life with your girls. I hope things get better for you all soon. I know you are proud of your daughter for graduating.

Kitkatz,moderator

Welcome to our community! What a heartbreaking story!! But I can feel your inner strength and you will all get through this as well. I have been on haemo for nearly three years now and though it is not what I prefer, it is making me feel better and able to get on with living! My caring thoughts and prayers are with you and your family. Please continue to update us, since we are now your family too.

Bajanne, Moderator

Kini. I was touch by your story and strength. Keep us updated, please.