I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Akidenrah on December 18, 2010, 03:59:08 AM
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I’ve been browsing around, searching for a site like this for awhile. My mother has been on dialysis for many years now. She lost her kidneys back in 1996 and our lives just turned over after that, including countless hospital visits, struggles to stay on the transplant list, failed home dialysis, failed transplant, admission to a nursing home and assisted living, and a hardworking man who just couldn’t handle his sick wife anymore… all this has led to where we are now.
I’m a 21 year-old caregiver for my mother who recently returned to home dialysis after her grafts clotted so often with dialysis at the center, they supposedly ran out of places for a new one. I moved in and began working as her provider shortly after I graduated high school and am now in my second year of college, majoring in Video Game Design, playing the parental role, and running on low fuel. We both are, so I decided to find a community we might fit in, with hopes of raising her spirits (and mine). She is unable to work, unable to drive, so she has little else to think about.
From the time I was too small to really understand what I was saying, I wanted to donate to my mom to make her better. I even researched it as a kid and asked about finding out my blood type, but they said I was far too young. Recently, I finally discovered I have the matching blood type and I would be the perfect donor (short of my never having had kids, which apparently is a factor) but now her PRA count has risen to 96%, shortening her chances of another transplant, even from me.
A little over a year ago, I followed a false lead where one of her nurses told us there was a procedure to lower the PRA count and then proceeded to tell us it costs thousands of dollars (at the least). I followed her second option where she said the medical costs could be covered in Baltimore. With high hopes, I called for days and finally got a hold of a nurse at the University of Maryland who, after looking over Mom’s papers I faxed to her, basically told me there was nothing to be done.
I’m not sure what else to do or what to say… so I’m looking to find somewhere to speak and share, and maybe receive a little advice for a mother/daughter pair who have run into several dead ends. With the years of experience under our belts, perhaps we could provide insight as well for new patients/caregivers.
I guess that was rather long, but thank you all for listening and we hope to make some new friends here.
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G'day Akidenrah and :welcomesign;. Boy, you've been dealt some lousy cards, but you sound like a toughy and I can but admire you. You'll find some good information here and, with your experience, you are going to be a valuable member of the gang.
By the way, you write beautifully.
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Hello Akidenrah and welcome to IHD! You are so young to have been through so much. Your mom is blessed to have such a dedicated caregiver and advocate. I don't know much about transplants but do know a little about the role of caregiver.
There are a lot of great folks on this site and I'm glad you joined. :welcomesign;
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:welcomesign; to one amazing young lady!!! You certainly have a heart of gold, and follow through to match!! :angel; <------ thats you for sure :) Im very happy you found it here and if you look around, you'll see lots to read and lots to post to. I hope you feel very welcome here and comfortable to share more of your life.. Blessings
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Akidenrah hello and welcome to IHD. I'm so glad you found us. You have a heavy load, but it's your Mother, so bless your heart. I hope you find love and support here.
Rerun, Moderator :welcomesign;
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There are IV treatments that can lower the PRA...why exactly wouldn't it be a viable option? Welcome friend!
xo,
R
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Welcome! You sound like a lovely daughter and caregiver to your Mom. So glad you found us. Why is never having had kids an issue for donors? I'm not sure I've heard that before.
:waving;