Please pray for my sister

[guineapig1]

I think I'm just looking for people who will understand my situation. I have AIH and PBC which I was told is not genetic or hereditary. When my sister started displaying similar symptoms to mine I urged her to see doc.

After blood tests they made app to see consultant,this took 5 weeks to come. Her ALT was 1100 and bilirubin 75,doc seemed unconcerned !!

Four weeks later she collapsed at home,BP was 49 over 26 !!!!

She was rushed to hospital where she stayed for 2 weeks,had ultrasound,MRI and CT scan but no biopsy as INR was 3.9 and they were worried about bleeding,they gave her no meds and bilirubin went up to 235 !!!

She is now at the QE in Birmingham in the super critical list for a transplant and we were told she wouldnt last the weekend,but she is holding on.

I can't help thinking that if they had started her on steroids as they did with me this could have been avoided,she still has no diagnosis.

Can anyone offer any advice ? Sorry for the long post but her family are all devastated,her only visitor allowed is her husband

Thanks for reading this xx

[Bermuda1]

So sorry to hear this, I hope the liver she needs comes soon. Bear with it darling , and try and keep her spirits up too.

[h0b0]

What can I say except good luck for a transplant.xx

[lovetocreate]

So sorry you and your sister are going through this! My dr told me that is WAS hereditary!! I'm adopted do I have no clue as to my family medical history.

I have made sure that my 2 kids he checked (daughter 30 & son 22). Daughter is fine. Son was diagnosed with something called Gilbert's syndrome which means that his levels are slightly elevated but that's all thank goodness. But at least they know what to look for!

I think your dr told you wrong. Not all Drs are up on PBC!! You really have to be your own advocate and question everything!!

[Yarnie in reply to lovetocreate]

I also have/ had PBC (say had as I had a liver transplant, so although not a cure it's holding it back). Like this lady Im at the QE. My consultant is a leading researcher in PBC, he also said that research has shown PBC isn't hereditary. I have no family history of any type of liver disease.

I hope all goes well for you all, thoughts are with you.

[guineapig1]

Thanks for replying,it was actually the liver consultant who told me is wasn't hereditary and we have traced family back for 3 generations,everyone lived to be at least 70 and some were in there 90,s. Docs say it is a mystery,but as she hasn't had a biopsy,they cant say for certain what caused her liver to fail. If you have anymore info I would be very grateful,it won't help her but may make make me feel better. Incidentally she had a blood test a year ago,which was normal,don't know how long these illnesses take to surface

Many thanks sal

[White-feather]

Hoping for the very best for your sister. She is lucky to have such a kind and caring sister like you.

Take care🌻