Hello! I am the mom of teen daughter on dialysis

[Bajanne]

Welcome to our community!  As you must have seen already, this is one of the best places to be for anyone connected in any way to this renal challenge that we face.  I am so glad that you found us.  This is an excellent site for information, support, and even fun at times. One of our mottos is 'Knowledge is Power!' and many of us have been empowered by this site.  In fact this is more than a website; it is a genuine family
This challenge must be particularly severe when you are a teenager.  But as you said, she is aware that dialysis is giving her an opportunity to experience life.   Please take advantage of all this site has to offer.  Read as much as you can and post as much as you can!  Let us know how things are going with your daughters (and yourself!)
Looking forward to hearing from you,




Bajanne, Moderator

PS. this was written since Feb 17, but I was having real connection problems.

[MandaMe1986]

Welcome to have you.    I am so sorry to hear about your girls, but this really is a wonderful site. You will learn lots.  Hope to see you around.

[thegrammalady]

yeah  someone else in colorado. me (another susan) auntie v and now you  welcome aboard, glad to have you join us. this is a wonderful place to land and i have nothing but good things to say about childrens hospital. my youngest (now 24) is severely disabled and childrens has been a godsend over the years. hopefully you will get a chance to meet okarol, she's a great lady and i've enjoyed every minute i got to spend with her and am looking forward to more. again glad to have you join us, we're all looking forward to getting to know you better.

[jessup]

G'day and 

[TeenHatesDialysis]

RichardMEL,

Thanks for providing the correct terminology to search for, "ABO incompatible transplant."  It is great to read the success stories  .  I questioned my daughters' docs and they said not in the cards for them.  Currently, they are both listed on the cadaver list, Jaclyn (14 yrs) since 5/2008 and Dez (18 yrs) since 1/09 ("inactive").  Their dad is blood type B, which matches Jaclyn, and he has been going through evaluations for more than a year.  First, he put on his medical information that he had a blood transfusion and I think that immediately eliminated him, but the blood transfusion was 20 years prior to Jaclyn being born....so I asked them to reconsider.  They drew his blood and mixed it with Jaclyn's blood and said that her blood rejected his,compatibility issues (antibodies?), although they matched 3 antigens. This didn't go over well with me so after about 3 months of begging the docs and the insurance companies to re-test, they drew his blood again and mixed it with Jaclyn's blood and MATCH!!!! - no rejection.  I don't know how that happens, rejection then no rejection , but I am not going to question it. Then during his medical evaluation they noticed strange cells by his spleen and ruled him out. Apparently, testing error, because when he was retested, the strange cells had disappeared. Next, there was a mass by his adrenal gland, 99% chance that fat mass that many of us get as we age. He is 47.....Then the doctors told him it was lymphoma....rejection again.  I told him to get healthy, because 3 years after being cleared of cancer you can donate organs. So we would move on to having the health evaluated of his sister (an earth angel). In the meantime, Jaclyn's dad pursued tests to see how the lymphoma was progressing, but it was gone Many tests later, no lymphoma, but he still has not received clearance to donate kidney.

We continue to test and hope for best.

Peace and happiness and one healthy kidney to everyone! 

[Maxridex]

  Hope your daughter get a kidney soon.

-Matt