I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: lola on March 14, 2007, 02:40:53 PM
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Hi everone, been hanginout finally decided to join, my husband has alport's first transplant"92" we go in A.M. to start the transplant evaluation to be re-listed again, i was tested matched 5 out of 6 but because of his antibodies being to high they said i'm not a match.love to chat so will probley be on here alot. :) :wine;
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:welcomesign; Glad to have you join us.
Joanna
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Welcome aboard, Lola! I'm sure you'll have tips for those of us who have not yet had a transplant!
:welcomesign;
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Great to have you here!
:beer1;
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:welcomesign; Lola
I am glad that you found IHD this time around.
Kim
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:welcomesign;
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Welcome to IHD Lola,
Welcome to IHD. Thanks for taking the time to introduce yourself. This website is intended to be your home away from home, offering advice when you need it, an occasional laugh and even more importantly an ear to listen to you when you ask questions, or just need to vent.
Unfortunately kidney disease and dialysis is the one common denominator that brings us all together.
Please enjoy the site and post often.
Sluff, Administrator
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Welcome to our community. This community embraces everyone with any connection to renal failure. Please take your time and read our many posts. And keep posting. We need to know how things are working out for your husband. Here is a group hug from all of us.
Bajanne, Moderator
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Welcome lola, good to have you aboard.
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Welcome. There is a whole section on transplants and the adventure we are all having trying to get one. Come on in and sit a spell.
kitkatz, moderator
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:welcomesign; Lola. I am glad you found us.
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Hi Lola, like your husband, I have Alports. I'm currently waiting on the test results from my donors for my first kidney transplant. Welcome aboard.
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Hi Lola,
I am 34 yrs old and was also diagnosed with Alports in June last year. I have been on hemo dialysis since then. This site has helped me learn a lot about my kidney failure and to take an interest in learning about what is happening to me. There are not many Alports syndrome sufferers out there. I have a hearing problem as well as the same gene affects both hearing and kidneys. I have to wear hearing aids since the age of 13.
Welcome to the site to you and your husband.
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:welcomesign; lola to the community~ from another Alport's person.
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Hi Iola, nice to meet you. kelli
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Welcome to the best site on the Web, best wishes to you and your husband :welcomesign;
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Would love to hear from female Alport's pt's know how males are affected but our 4 year old daughter is starting to have syptoms. thanks :thx;
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Welcome, welcome!
I'm new too. Everyone seems very nice and they're full of good info... :welcomesign;
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Alports is a X-chromosone gene.
I have a daughter and I was told she would only be a carrier of the disease. That her offspring will have a 50/50 chance male to have the disease, girls are less likely to be effected.
Male - XY (X - from mother, Y - from father)
Female - XX (X- from father, X - from mother) which ever X is the most healthiest would be the dominant X.
Something like that.... ::)
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that's what we were told we have two daughter's 7 & 4 our youngest has protein in her urine and scarring on her kidney's we have now been told she is a sufferer and will probley need transplant down the road.
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Has she gotten a biopsy done on her kidneys? How do you find out if there is scarring on the kidney?
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:welcomesign; :;
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:welcomesign; lola.
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we had ultrasound because she always said her stomach hurt and her urine looked like cranberryjuice, that's when we found out she also had protein in her urine so we tried meds but they didn't work. She's had 3-4? ultrsounds so far and they she a little more scarring each time, we see a neph at the u of m who researches Alport's and followed my husband and his 3 brothers when they were little.When ever she is sick she's in heat she say's (we have a female puppy!!)
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This section is for introductions. If you want to discuss a different topic you need to start a new topic on the subject in the proper section. If you have any questions feel free to ask a mod or admin.
Thanks,
Sluff, Administrator
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Hi Lola! I'm a female with Alport's, runs in my family, 50/50! I have a sister with it, a brother with it, we got
it from my father. It's been an interesting run! I'm the most severely affected, the only one with kidney
problems (one kidney never developed) We DO need to start a thread for us Alporties!
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:welcomesign; Lola! It was so good talking to you in chat the other night! Isn't this just the best group of folks? So helpful and kind!
:grouphug;
Earlinda "Early"
EDITED: Fixed :welcomesign; icon error - Goofynina/Admin.
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Lola, Why does bad things happen to people like you. You have a beautiful family. If i could i would take it all away. You are so much fun to talk to in chat. i will always keep my ears open to someone that has your husbands blood type. One of these days i will get up to your neighborhood.
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:welcomesign; to IHD! Looking forward to gettinng to know you.
Earlinda
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Welcome to our community. I see you have already made yourself at home here. And that is how it should be. This has become a real family and we just love to have others join us. Looking forward to hearing more from you.
Bajanne, Moderator