PFIC 1

[Kriskel1220]

Hi my name is Kristen. We have a daughter who was diagnosed with PFIC 1. She has had a PEBD, liver transplant, and now a PTBD placed due to the underlining disease which effected her new liver. She has had this drain in place for 5 years now.

[Stacian]

Hi Kristen How is your daughter doing she looks well x my 2 year old has PFIC and is due to have her biliary drain put in next week, although the surgeon said it will be a stoma as aposed to the drain your daughter has. As you can imagine my husband and I are terrified, and struggling to cope. I hope. You don't mind me messaging you but I am desperate to speak to someone who has been through this

Thank you

Stacey

[Sharoncanada in reply to Stacian]

Hi Stacey,

How did the diversion go? My daughter has PFIC 1 and is scheduled for external diversion soon...

Thanks for any info you are willing to share!

Sharon

[Stacian in reply to Sharoncanada]

Hi Sharon

My daughter had her PEBD 5th of July. A few struggles post op with wound opening and infection following this. It helped with itching slightly at first and bilirubin levels came down from 78 to 54, so we were hopeful. But now her bilirubin is up to 84 she is very jaundiced and itching more than ever. She is also very anaemic. They now feel the drain is not working. She has an appt in Birmingham on 25th Sept, to discuss what can be done now.... I apologise that this is not a positive response but I have not spoken to anyone else who says the drain has failed. I am. Happy to discuss anything with you... I apologise that I don't always come on here. But I am happy to exchange e mails if this helps... Good luck and I hope your daughter is well xx

[Sharoncanada]

Hi! My email is [e-mail]. Would love to connect when you get a chance. All the best!