Hi, please can someone tell me how you know when you've been added to the list, my daughter has had all her checks done and has been cleared, the coordinator confirmed that the paper work has been completed. Do they send you a letter to say your now activated or do they call you to tell you. Thanks
Hi i received a letter saying she was on the list but her status was on hold because at the moment she was stable. She was switched to active 12 days ago
Sorry i should have said im talking about my 16 year old daughter.
Thank you aidi, I have since found out that my daughter is still not on the list, been told more blood test was needed my daughter has now had the additional blood taken (last week) and we have been told that she will be activated on Friday as appearantly that's the only day they activate them. I find it all takes so long. My daughter is down to 6% fuction now. We do have a live donor who has taken the first steps and they are a 2/6 match for my daughter but still want her on the list just in case it dosent work out with the live donor. I also think that as my daughter is Young a deceased donor would be a better match for her and to keep the door way open for further transplants to help keep the antibodies down. It's so hard to know which way to proceed. Many thanks Sarah
It does feel like everything takes forever. My daughter was schedule for transplant on July 14th, living donor and us went for pre op on July 6th and 5 days before surgery it was cancelled. It was even more devastating than when she was diagnosed last August. Now we are getting ready to start testing on another living donor while also waiting on the list. How old is your baby? And what is the diagnose. Mine has MPGN.
My daughter is a little older than your she's 21 but still my baby, we don't really know what happened to her kidneys. As on 21st may this year she felt unwell so went to the doctor as she had a bad headache on and off for a few weeks the doctor took her blood pressure and she was rushed to hospital as it was high once arriving at hospital they carried out a few test and told us her kidneys weren't working probably and transferred her to intensive care she was then transferred by sir ambulance to Guys hospital in London (we live in Guernsey) where they carried out a biopsy and you'd us her kidneys had failed and was only working at 10 %. The results of the biopsy just shows heavy scarring her kidneys fuction is now at 6% and she started PD dailysis on Sunday just gone. A lady from my work has been tested as I'm not a match for my daughter. The lady at my work is a 2/6 match and I'm worried she won't see it through or if anything shows up in her work up. I also think as my daughter is young would she be better off from a decessed donor as the match would be better which hopefully wouldn't lead into to many antibodies as with bring do young further transplants will be needed. Guys hospital told my daughter that people get activated on a list on a Friday so hopefully that would be this week. I believe the wait can be about 3 years but hopefully with our daughters bring young they wouldn't wait that long. I have also been hold that as my daughter is 21 she is classed as a young adult and will only be offered a kidney from a donor who is 10 years either side of her age , is this the same info as what you have been told.