Transplant Waiting List

My daughter was diagnosed with BA in January, She underwent the Kasai procedure in Birmingham, but unfortunatly it has failed. She is now on the transplant waiting list and has been there since late September.

I am currently undergoing all the tests to be her live doner, and so far so good.

I'm interested in hearing from other people and how they managed to cope whilst there child was on the waiting list and the inevitable phone call that we are all waiting for.

32 Replies

oldestnewest
  • HI there. My daughter had a living donor transplant from her dad 4.5 years ago now. There is no simple way of dealing with it! I remember driving one day and I heard on the local radio that there had been a fatal local road accident. I remember thinking my first thought of, wow, an available liver, that could be me! No one but us understands what we go through. It is a very unique and strange situation to be in, which I wouldn't put on my worst enemy. Come over to facebook and look for liver mums group; here you will find other mums and dads all going through the same thing, all feeling totally paranoid and mad but also there to support each other through everything from bloods to baby milk shortages! Good luck

  • Mike, how is Amelia doing? Tilly is still waiting... Been 13 weeks now for us! So hard isn't it. We had a call 2 weeks ago at 2am putting us on standby as Tilly was back up for a liver but the other one went ahead... Messed with our heads!! How are you finding the living donor stuff??

  • Amelia is doing well, we was in birmingham today to see Dr Gupte and he is happy with how she is doing, all things considered. I bet that was a real nightmare, its hard isnt it, but she will get what she needs eventually.. Have you had any more stays in ward 8 lately?

    Living doner is going okay, im at the queen elizabeth tomorrow to see the doctor and then next tuesday to have 4-5 different tests and fingers crossed all will be fine and we can progress with it, and set a date. I like the idea of taking what little control over this situation that i can by being her doner. Are you still going through with live doner? Amelia is blood group O, which is apparently a really common blood group so they have said that she may be waiting a little longer for a liver to become availible. Maybe if you got the call to be on standby then it may go ahead pretty soon...

  • Hi my baby had a transplant at 8 month old june this year it was a rollercoaster as her dad was tested to be live doner and was a match she was placed on list in may , and we recieved 3 calls for a liver ...fortunately 3rd time lucky and that liver was used rather than her dads , we got thrle last call hours b4 the live donation op was booked for , so there is always time :) its a rollercoaster ride at the time but defo worth it .she too was blood group o.fingers crossed for u all xx

  • I have just had a call from the live doner team, the transplant has been provisionally set for January 15th, Very excited and aprehensive about the whole situation. Just need to hope that my last few tests come back ok!!

  • Hi- I can't remember if I've posted somewhere on here about our experience but my boy had a part of my liver in July- we've not looked back. It's better not to have to go through the surgery but our boy was suddenly so ill there really wasn't a choice, but we're both really well now. I hope you're all doing ok. Keep in touch.

  • Hello, the date has been changed to the 22 of jan, so a further week to wait, we are doing okay, my daughter has been quite poorly the past couple of weeks, her phosphate level is low and will not budge also was admitted with a severe case of bronkioitis over xmas. just want it all over now, want my little girl back,

  • Hello. How are you all doing?

  • Hi, were okay getting slightly nervous now, Amelia is in birmingham childrens atm, has been since last thursday, very low phosphate levels and they cant seem to stabilise them, transplant surgeon has said today that they will go ahead with the surgery as planned even with troublesome phosphate. Still hoping we get the call for a liver but that hope is gradually fading as the date draws closer. how is your little one? have you had many admissions since transplant? last time we was in bch we seen this little girl who was waiting for a liver, and today we seen her for the first time post transplant, amazing couldnt recognise her!! Its comforting to see and hear about all these kids who are doing so well after transplant!!

  • Hello! Since transplant my boy hasn't had a single admission- he's been so well and full of beans! We can go for long, muddy puddle walks, he scooters everywhere and is still bouncing at bedtime. Last summer he couldn't walk up the garden without feeling puffed out. We got to this point, a week before the scheduled surgery, and it was cancelled because I had an abnormal clotting enzyme. I had a repeat blood test and we were waiting for the results (I'd been given an appointment for a month later) when Bertie's liver failed. The blood test result was checked and was fine so there was no chance to get nervous because we went ahead with it the next day, no choice really- it just had to be done or we'd have lost him. Within hours Bertie had gone pink. The next day his big tummy had gone down, all his huge veins had disappeared and his eyes were a magic and sparkling white! He was back at school at the beginning of the Autumn term just five and a half weeks after the operation- stunning!

    If Amelia's a BCH where will you be recovering? Do you have to be in a different hospital?

    It really has transformed our family life. It has been so worth every minute of discomfort for me. There was such a massive incentive to get moving and well again to spend as much time as possible with Bertie.

    Obviously it'd be great if a liver became available and you didn't have to go through surgery but it's wonderful that the medics and you are able to save your little one's suffering, even her life.

    Good on you! Keep in touch!

  • That really is amazing how well he recoverd. So amelia will be at BCH and i will be at The Queen Elizabeth, its around a 10 minute car trip so not that far, but a million miles away when i've had surgery as i cant see her until i have been discharged :( there was talk about maybe taking me over to see her a couple of days later, but im going to push for that when the time comes. It's great to hear how well he is doing, fills me with so much hope and dreams. Even the smallest of things like being able to go and book a family holiday which at the moment is impossible.

    What can i expect from the surgery and recovery, i have been told alot of stuff by surgeons and co-ordinators but i think unless you have been through this you cant really relate to it.

    x

  • Both being at King's I was able to get to see Bertie the next day but it was quite an effort. I pushed myself hard with the physio and mobility and felt much better for it because I'm a real fidget anyway!

    With the recovery I think we're all very different but do tell visitors to leave if you want a sleep and try and eat plenty of fibre to get the bowels going again- they won't discharge you if you haven't done a poo! Plenty of nutritious food and fluids, moving about often, ask for help when you need it.

    Tell staff if you're in pain and they'll give you something (but I did find the tramadol made me feel a bit yucky even though it seemed to work.) Don't be alarmed when you lose a few kilos in weight- that had my family very worried but they didn't need to be. Be gentle on yourself when you're discharged, too. They recommended not staying with the child as it might not be sufficiently restful but actually I found it incredibly comforting and the staff were really kind and helpful. I preferred the firmer pull-down bed in the children's ward as well!

    Don't forget your phone charger/ipad/kindle/laptop!

    It'll be a stressful time for Amelia's mummy- do you have other family who can maybe stay with Amelia overnight at the hospital while she takes a break? My husband found it very helpful to be removed from the hospital by friends and family who took him for a meal/hot chocolate.

    Do you have other children? My other boy (3 yrs old) stayed with my mum- the first time he'd stayed away from us and I had been worried and missed him like crazy but he loved it!

    I can say with all honesty that when I woke up in the liver intensive therapy ward immediately after the operation it was the happiest day of my life- I couldn't stop smiling!

    There's loads more I could tell you but do ask anything specific if you need to.

  • Please just tell me as much as you can possibly remember, its better to know as much as possible before, take away a few nerves. We have lots of family and we are very local to BCH so everybody lives within 20-30 minutes from there which is good for all the support she will need. Laptop and Ipad at the ready try and keep me sane! We have another child she is 3 in february and she really misses her little sister, its the only real time Amelia smiles is when her big sister comes to the ward to visit her! More weight loss... I have had to loose 8-9KG for this to go ahead and i feel so much better for it!! I can imagine all the emotions that will be running through me when i wake up, but wont be able to be settle until amelia is out of theatre, I will be down about 8 in the morning, and they have said amelia will be down around 11-12, so when i wake up there will be maybe 5-6-7 hours of amelias surgery left, i imagine that time will be the most difficult! So if theres anything else you can tell me it would be greatly appreciated!!

    Hope Bertie is doing well!!!??

    Mike

  • Please just tell me as much as you can possibly remember, its better to know as much as possible before, take away a few nerves. We have lots of family and we are very local to BCH so everybody lives within 20-30 minutes from there which is good for all the support she will need. Laptop and Ipad at the ready try and keep me sane! We have another child she is 3 in february and she really misses her little sister, its the only real time Amelia smiles is when her big sister comes to the ward to visit her! More weight loss... I have had to loose 8-9KG for this to go ahead and i feel so much better for it!! I can imagine all the emotions that will be running through me when i wake up, but wont be able to be settle until amelia is out of theatre, I will be down about 8 in the morning, and they have said amelia will be down around 11-12, so when i wake up there will be maybe 5-6-7 hours of amelias surgery left, i imagine that time will be the most difficult! So if theres anything else you can tell me it would be greatly appreciated!!

    Hope Bertie is doing well!!!??

    Mike

  • I hope it's ok but my answers may all be in a very random order, as is my brain! It'll be when I can access a computer between bits of work and doing my boys' bits and bobs, too!

    When I awoke after surgery it was good enough to know small bits of progress (liver's out/in, child well, surgeons are happy....) as it's very hard to stay awake anyway- at this point you have to give in to trusting the team and give yourself a rest.

    It might be distressing for older sister to see Amelia straight after surgery- we were advised to leave it about 4 days but actually siblings weren't allowed onto the ward (infection control) and Bobby didn't see Bertie for 9 days because he was away at Granny's.

    It took Bertie about 3 days to start smiling/talking again after op (but he'd hardly smiled/talked for 2 days before because he was so ill) then suddenly he was wanting to go to the playroom and eat large platefuls of food- didn't like food before really!

    Can you get a family member to coordinate visits to you/Amelia/relief for Amelia's mum at BCH so she can come and see you too?

    I'll warn you that crying and laughing both hurt afterwards so you have to do them quite carefully- sounds funny, doesn't it?

    I went down at 7.30am, out at 11.30, Bertie went in 12noon and was out at about 5- that's very quick, though.

    Is your other daughter all prepared to stay with another family member so you don't have to worry about that?

    Better go now- got to give trombone lesson......

    Back later.

  • Don't be too hard on yourself if you're not up to visiting Amelia for several days- you'll be attached to the epidural, drain and catheter for 4/5 days and the shortest walk/wheelchair ride can feel daunting but you'll know what you can manage.

    A small thing, quite funny too- the nurses came to check blood sugar every morning at 6 (ages since supper and before breakfast) and mine was (and probably is always) low at that point so in order to avoid having to be supervised eating a packet of mango/pineapple/biscuit and not being allowed to go back to sleep until I'd finished I'd eat some cake or biscuits I'd saved from teatime at about 4am so my blood sugar was perfect and I could nod off again- just a little tip!!!

  • ....and thanks, Bertie is doing FAB!

  • Hope you're doing ok.

  • hi, sorry for not replying, had a busy day or so, we have been discharged for the weekend and which is nice get to spend a nice weekend at home before the big day, all is going okay other than pesky phosphate which is still being troublesome but they have said it wont stop the transplant. just really want it to be over now, looking forward to the future!! a little worried about the surgery but rhats just normal i suppose. hows your little one?

  • I suppose you're all going to hospital tomorrow so I'd like to wish you all well- the future is so worth the discomfort and short term difficulties. Special times ahead!

  • Hi, just a little update, both surgerys were an amazing sucess, amelias transplant only taking 4 1/2 hours with mine taking around 6-7. Amelia is having to have ultrasounds daily as a routine and the sonographer says the liver looks 'beautiful' surgeons said it was justba faultless and brilliant procedure and the quality of liver has made the difference. Im in alot of pain atm, epidural and pca both came out today, stayingbon oramorph for a while. This agony is the least of my worries, were just amazed aswell are all the docs at how well shes doing. Touch wood sje continues in this form and we get a early discharge!!

  • Well done everyone! It's amazing how the pain feels so much less than the pure joy of knowing your child is becoming well so quickly, isn't it?

  • Hoping you're all doing well.

  • Amazing delighted both surgerys went well and Amelia is doing so well, amazing the doctors. Figures crossed for early discharge for you's :-) xx

  • Hello. Have you been discharged yet? Are you both doing well still? Just let us know when you have a moment and feel up to it. Thanks!

  • hi, i was discharged on monday morning and amelia is due for discharge on monday, we are jist going through the learning of the medici es now. Shes doing amazingly, she was obly in surgery for 4 1/2 hours, just remarkable, i was down longer, about 7 hours start to fnish for me. Im feeling okay, still sore and in abit od pain every now and then but all worth it!! i found the first two days afyer surgery the hardest, felt like a had some sort of mental health problem lol the doctors said it was perfectly normal and is to do with the toxins rushing to my brain!! Glad its all over now and can finally draw a line under this and move on with our lives!!Amelias billirubin dropped from over 400 to around 80 in a day, just amazing!!

  • So pleased to hear everything's going well. Fantastic! Funny, it only seems like yesterday I was waking up elated after the surgery (but obviously not particularly mobile) and this week I've done hours of digging in the garden and feel brilliant! It's great to be using that body strength fully again. Really happy for you!

  • Hello! How's it all going?

  • Hello, its all going fantastic, it really is. Both of us have recoverd really well. Amelia was in clinic on monday and i think Amelias blood results sre better than mine, they are all fantastic and within normal ranges now. Having a little trouble with getting her to eat again as she was really good before transplant and now she hasnt got very much of an appetite. Hows everything your end? any tips on getting her eating again? Dietician wants to start giving her fortini,which is just a milkshake 3 ti.es a day and cut her bottles out, then with a plan to remove overnight feeds and ng tube removal

  • Well done! Isn't it exciting when the bloods are "normal"- as in normal for a normal person not a liver patient! My Bertie didn't really like food before transplant (unless it was crumble and custard) but within a few days of the op he was eating really well so we never had that issue. Maybe her taste has changed- I have heard of that happening (talking to adults who've had transplants) but don't know to what extent it's true. How's your tummy? I'm still flashing my scar to people I haven't seen since the surgery!

  • Hello again. How are you both doing? All settled down and back to "normal"?

  • Hi, my daughter was also born with BA. Her Kasai failed after 6 weeks. We were on the list for 5 months before we got the call that lead to her successful transplant. We had a case packed that was ready to go at any time. The waiting I know is very stressful & I remember feeling sick every time the phone rang. That was 12 years ago & my precious daughter has been in great health.My thoughts are with you I know what your going through.

You may also like...