Biliary atresia

[Loooooo]

Hi everyone, my name is Louise Currie, I was born with Biliary Atresia and was given the kasai operation at 6 weeks old. I was the first in scotland to survive after having the kasai operation, thx to Edinburgh Sick Kids hospital, and im now 28-almost 29! I havent ever had a liver transplant and have even had a daughter who wil soon be 8 years old. Its different to live with this BA and the other stuff, but i manage. Im happy with a family a dog and a full time job-as normal as anyone else! Please if any one would like to chat about this pls dnt hesitate to contact me, id love to hear from others with BA stories. Thx

[braveboy]

Hi, great to hear your story, so inspiring to hear such positive stories, hope you continue to do well. My son is 9yrs old, Kasai only and Ph, hope he continues to do well, thankyou for sharing your story.

[Loooooo in reply to braveboy]

Your very welcome! Its great that we have internet nowadays to find ppl like this! I always google hospital stuff even tho they say not to- but forums like this are excellent! Im glad if nothing else my story brings a little hope! All the best for your son, im sure he will continue to be strong and keep surprising you and the doctors

[McSousa]

Thanks for posting- very encouraging! My son's been doing ok with just Kasai but is now waiting for a transplant. He's 5.

[Loooooo in reply to McSousa]

Aw thats great that he can get a transplant! Hope it all goes well for him and you too! Xxx

[McSousa in reply to Loooooo]

Hello. My little boy had his transplant 3 weeks ago. He had a piece of my liver!

[Loooooo in reply to McSousa]

OMG! Amazing!!! How does that work!? Aw I hope hes doing gd now - and you too xxx take it easy xxx

[aaron1992 in reply to Loooooo]

Because your liver is the only organ that regenerates, it can regenerate into a full liver from a quater of the size, hense the piece. It regrows new bile duckts and tissue unless the liver is scarred 'Cirrhosis' then it will be more ar risk of failing.hope this helps

[YBiliaryAtrecia in reply to McSousa]

Hi McSousa, you are really brave. How are you doing now. Has there been any changes in your life style since your surgery. My little girl had her kassai 8 weeks ago and her bilirubin hasn't come down. I am already thinking ahead to make my mind prepared. I would love to give a piece of my liver to my little girl if required. curious to know how that works?

[masonel]

Hi Louise, my name is Eleanor and I had a kasai at 6 weeks old and a transplant at 17 years. I am now 31 and in perfect health. Great to hear from other people my age who have done well. I think I might beat you as the first to survive the kasai tho! I had mine at Kings College in London and was I think the only one around the same time to survive beyond infancy. Thanks for sharing your story. It seems it really helps to give hope to those families going through this now.

[Loooooo in reply to masonel]

Hey Eleanor its great to know theres more ppl like me! Haha! Think i meant first in scotland?! Do you have portal hypertension or any other problems? X

[masonel in reply to Loooooo]

yes, you probably were the first in Scotland! And no I have no portal hypertension or any other liver related problems at all! The last time I had an ultrasound the radiologist described my liver as being 'beautiful'!

I am married - and have been for almost 8 years. Sometimes I forget I am supposed to have something wrong with me and people certainly never guess. It is a great 'interesting fact' to drop into conversation sometimes and see people's reactions! Where are you living now?

[Loooooo in reply to masonel]

I live in edinburgh. You are very lucky to have been given a transplant! Wel jel! Lol xx

[Macca74]

Believe me ladies...it really does help!!

Your stories are so lovely to read, and so positive..which is difficult to be with BA.

I have a 14 mth old baby who had kasai at 3 weeks and so far is doing really well, so I hope she can be on here in yrs to come sharing stories of fulfilled life like ypyrselves.

thanks for sharing. xx

[Loooooo in reply to Macca74]

Its more than heartwarming just to know that my story and others can help you! Im a mum now too-unbelievable i know but it brings my illness to a new perspective. I always knew how it affected me and i always thought I knew how it affected my mother-oh how wrong i was! Once i became a mum and jus realised in true perspective how hard it must have been for her and you too. Its great to hear babies having the kasai at 3 weeks too. Hope all goes well for your babies future and yours too xxxx

[clarey91]

Hi, your post has been encouraging! I'm 21 now and had a kasai at 9 weeks, I worry a lot about having to have a transplant I think more because of the fear of the unknown. But your story has filled me with reassurance! I'd love to hear from you x

[Loooooo in reply to clarey91]

Your are more than welcome! May I ask where in The world u r? Do you have any other health problems because of the BA? Would love to learn more about your life story x

[clarey91]

I'm in Birmingham UK I have portal hypertension, oesophageal varacises and progressive chirosis of the liver. I also have episodes of cholangitis. I sometime find it quite hard to cope and to explain to people who don't know about the condition what I have. I also have a brother who is 17 and in perfectly good health and have just finished studying at De Montfort University in Leicester, towards Psychology. I have a boyfriend of 4 years and thankfully he is very supportive and understanding. X

[Loooooo in reply to clarey91]

I have hyper splenism, PH and varices which require banding! Pain in the bum! I have a twin brother who is perfectly fine! He is in fact working abroad just now. Thats gd that ur bf can support you i know how it feels when u say you cant explain it! It is hard and sometime u jus think is it worth me explaining it? Its even harder when ur stood there looking perfectly healthy on the outside!! Haha! Its almost harder bcos I dnt look ill. Xx

[clarey91]

I'm in Birmingham UK I have portal hypertension, oesophageal varacises and progressive chirosis of the liver. I also have episodes of cholangitis. I sometime find it quite hard to cope and to explain to people who don't know about the condition what I have. I also have a brother who is 17 and in perfectly good health and have just finished studying at De Montfort University in Leicester, towards Psychology. I have a boyfriend of 4 years and thankfully he is very supportive and understanding. X

[courage]

Hello Louise, my name is Karen. i'm Andrew's mum who was born with BA 11 years ago. He has only had a Kasai operation at 10 weeks. King's College Hospital in London looks after Andrew. My little boy has really excelled at long distance running. BA doesn't hold him back either. The CLDF contacted me and asked if I would share Andrew's story with my local paper which I hope will help other families in our position, but who may be just starting out with a baby being diagnosed with BA.

I found reading your story uplifting and it gives me hope that Andrew could also get to 28 yrs and not need a liver transplant just like you. Have a look at the link I have sent below, turn to page 12 of the newspaper to read about Andrew and see pictures of us all. From Karen Worrall.

edition.pagesuite-professio...

[Loooooo in reply to courage]

I cant begin to describe how overwhelming it is to be receiving so many comments! Wonderful! Aw im glad my story makes you more hopeful! I too was in my local papers when i was younger for the same reason really-to make people aware. I really dont feel that there is enough awareness! I get sick of the look if i mention the words liver disease, ppl instantly think of alcoholism-couldnt be further from the truth! Im very grateful for every day I have and I hope your son continues to do well. This is the first time I have 'posted' on the internet glad for all your support! All the best to your son im sure he will be a champion! Xxx

[cherub]

Hi, lovely to read your story and all the comments inspired by it. My son is 19 years old and has BA, he had the kasai at 8 weeks at Kings College Hospital. He left school after getting his A Levels and is now working fulltime in Retail. We are a close family that were rocked by his initial diagnosis, but with the support provided by the CLDF for us and his sibling we have never looked back. If I am lucky I get invited to attend his annual check up at Kings. We are looking forward to a bright and positive future we our boys xx

[Loooooo in reply to cherub]

Aw thats great! I loved retail! Used to work in clares accessories then became manager and moved to threshers wine shop, became pregnant and had to give it up! Really hard going on ur feet all day! Loved it tho, have now got an office job in a laboratory which is great! Im glad you all had support from this charity-I hadnt heard of them until google brought it up last week! Nothing much in termsof support up here. My mother is not interested in my illness at all! Think ignorance is to blame ! She like many others just doesnt get it! I havent ever met or talked to anyone else with BA until i came on here. All the best for your son xxxx

[Liza12]

It is so lovely to hear all these lovely stories post Kasai. My baby boy was diagnosed with BA in January this year, we were transferred from Ireland to Birmingham Children's Hospital it was the most scarey's and emotional time in our lives. Jack was my 4th baby and to leave my other children (5,4&3) was awful, Jack got his Kasai at 7 weeks old and is just doing amazing since (I know it's still early days) but his bloods are coming down at every check up he is just such a good happy (all ways smiling) wee man :-). He is now 7 months old and has went through so much in his life already, and like you's people are not aware of how ill He was and that he has a liver disease for the rest of his life. I do think more people need to be made aware of BA. My son was in hospital three times in the one week and was sent home, I kept his nappies (I thought they were paler than they should have been) to show midwife/ health visitor but was told they were find. because BA is so rare I don't think the signs are looked for enough. But thankfully our wee man (STAR) is doing fantastic and your stories have give me good positive attitude thank you for sharing it with us

[Loooooo in reply to Liza12]

Thats great to hear! Im sure he will continue to grow stronger! My mother brought me up to thinking there was nothing wrong with me at all i was jus normal-except with an occassional visit to the hospital just to double check i was doing ok! It had its pros amd cons to be honest! My mum also had other children-my two older brothers who were 9 and 4 when i was born and my twin brother too. I cant imagine how difficult it must be but you must always remember it will all be worth it! Stay strong and have faith-the human body is amazing and your son will get stronger, i hope you have some good people at your sons hospital it can make all the difference. All the best for your familys future xx nice to meet u

[Blazer]

My son had a Kasai last week at 11 weeks 6 days... Due to lots of issues with local hospital... We are home now after a rocky recovery from surgery, I am so scared about the future but trying to be positive. Reading these posts gives me hope & strength

[Loooooo in reply to Blazer]

Hello there, I really do hope ur son is getting better- im sure he will continue to overcome this, and surprise you more and more. Please ensure that you include your family and take all the support thats offered to you , but together you can both get through this because remember what doesnt kill you only makes you stronger Please keep me updated, look forward to hearing from you. L x

[aaron1992 in reply to Blazer]

The more you worry the more you will make yourself I'll, I have billary atresia im 21 in December and ive had my kasai operation, I have had no bleed and I don't think about it I take every day as it comes hope he does well x

[LisaXx]

Hi I'm like u one of the first and I am 30. I have portal hypertension with it. It nice to know there people to speak to on here as most is for the children not adults

[Loooooo in reply to LisaXx]

Hi Lisa! Aw great to know theres someone else jus like me where do you live? X how is your life? X

[LisaXx in reply to Loooooo]

I live in surrey so attend kings college hospital how about u. I had a check up last week and I have to have endoscope soon as there is a few bleeds also my portal vein in my liver is slow how is u

[Loooooo in reply to LisaXx]

Hey, i live in edinburgh and i too have portal hypertension and have had to have banding done for the last 13 years-and apart from that im fine really! I work full time and have a 9 year old daughter. How about you? Do you work and or have kids ? Xx

[LisaXx in reply to Loooooo]

I work in the police and have no kids

[Amyp79]

Hello! My daughter had Kasai at six weeks and is going to be 11. What kind of diet do you eat? Exercise? Medications? I have so many questions!!!!

[Loooooo in reply to Amyp79]

Hi Amy, feel free to ask me anything! i don't eat specific diet-isn't life too short to worry ?! i do eat relatively healthy, I always have breakfast bars or fruit in morning and if i am working its salad or soup for lunch and whatever i feel like for dinner! I don't 'not' eat anything. I'm fussy but that's personality not health related. The only issue i ever had was low protein when i was pregnant it sorted itself out Im not on any medications for my liver and as for exercise-pppfffft! i hate it ! haha i love to walk and thats about it Hope thats a wee bit helpful

Louise xx

[Amyp79]

Thank you so much.

[Amyp79]

May I ask what your family medical history is like? Do you have joint pain during activity? My daughter just eats like crazy and her BMI has started to get a little too high. She complains of leg pain when she runs but I don't know if it's a BA related symptom or her working my sympathy.

[Loooooo in reply to Amyp79]

My medical history is hard as my mother was adopted and so we dont know anything about her side, my father died when i was 19 and all i know about his family is very little, his mother passed away from lung cancer. My mothers birth mothet is from lebannon and sometimes i wonder if thats a factor in my illness as a lot of research says it most common in the eastern world and girls. I have leg pain 😅 actually cant wear skinny jeans certain days cos its that sore! Its more in the back of my calves esp my left leg. have you told the doctor? I have problems with fluid retention in joints. And very very bad varicous veins! Xxxx

[Amyp79]

I'm going to bring it up in our next visit in November. It's not severe or constant. Thanks for talking to me. I have so many worries as not many kids with BA do so well.

[Oliviaamyprice]

Hey guys.

I realise this is an old post but I just wanted to mention that I was diagnosed with BA when I was 6 weeks old. I underwent a successful Kasai and now 26. I’m currently waiting for a liver transplant, and have been since 9th Nov 2017.

Nice to know there are others out there who understands what it’s like to be in the same position.

[Bayu in reply to Oliviaamyprice]

Hi,

It is definitely a great platform for us to express our feelings, my daughter had her kasai on October 2017, she is now 6 months old her bilirubin is reducing slowly. Now in January got her LFT done her total bilirubin is 2.8 and direct bilirubin is 1.6. I wanted to know if this fine ??? And also she is passing bright mustard colour stools, she is also gaining weight and reaching all milestones. How do you know if she is doing all fine and the transplant is not required???

It would be great help to get response from you all..I’m still a tensed and worried mom 😞

[Yuie]

Your post were really encouraging, my baby girl had kasai at 76 days, we know that it’s a bit late, but we hope that the kasai is working on her, so far after 1 week of post kasai, her bilirubin is finally going down.. I really hope that she won’t need to do the liver transplant since in malaysia we don’t have it here.. and we know it’s going to be really expensive if we do at other country. Which is we can’t afford it. Help me to pray for my bby.

[manhealth]

Such an inspiring post and really gives hopes. My son undergone kasai at 81days and bili has reduced drastically..!!