Maggies story

I have BA i had a Kaisa done at 7 weeks old at kings college hospital i was vitamin k, pheonobarbs, question and couple others i am now 19 years old i am only on ketive tablets because my liver carnt make them i came off the rest at 17 i had a problems over the years but at 19 i am fit and well still haven't had a transplant yet and keep ur hopes up and remember your child will grow up fit well and happy and we all learn how live a normal life with our condition. I never take anything for granted if anyone would like to talk to me don't hesitate to contact me xx

6 Replies

oldestnewest
  • Thank you! It is easy as a parent to focus on the negatives at times so it is wonderful to hear how you can be fit well and happy and learn to live with a liver condition and lead a normal life :)

  • Hiya, I have BA aswell, was diagnosed at 6 weeks, had my kasai at 6 weeks and was on phenobarbital, vitmain k, iron tablets and afew more to control my liver results anyway had a fairly good life up until 20 where I had my first portal hemerage it wasnt a major one but the point is it burst so had endendoscopes every 4 weeks then had another hemerage a few months after and so the banding became more frequent. I then had a phonecall from the hospital asking me to come into clinic and now they are placing me on the transplant list in Kings, so waiting to hear back from Kings, on the plus side the kasai is only ever a temporary procedure. But its done very well hope your well and if you also want to chat feel free to contact me

    Aaron

  • Good luck. I'm 31 and like u was fine until my 20s then hypertension took place. I'm not in transplant list at this time however I feel once u reach adulthood u get no support at all. Cldf is great but what about the people who reach adulthood where is our support I mentioned this to cldf and felt like I'm wasting my breath

  • My mum was always on her mind and my brothers they all cope very well with it but i feel like they a little bit over protective because of my liver problem and in the only girl out of 5 brothers that never goes away but as time goes on it starts being easy to cope with just now and again she gets upset when thinks about the times when i was a baby and she gets upset when she hears about other baby's born with it x

  • The Kasai procedure is not classed as a temporary procedure, for some people they only ever require a Kasai - each person's journey is totally personal, hopefully Aaron1992 you are receiving the best support from Kings sorry to hear you are being placed on the transplant list, best wishes CLDF

  • could not fault my care one bit, sorry for the extremely late 9 month reply I will keep you posted. thank-you for the support been listed for 12 months now so hopefully wont be much longer

You may also like...