Hello everyone, I'm new here.............

[Dave]

Hello,

My name is David Bettelley and my 12 year old son Luke had a living related transplant at Kings in March 1999, he was the first child in the UK to have a living related transplant for acute liver failure.

He has been fine since but 4 months ago his liver started to fail again - it is not rejection and the doctors do not really know why it is failing. He recently had a pre-transplant assesment and is now listed for another transplant. Out of the past four months he has spent three months of that time in hospital. He is currently very very yellow and taking 28 doses of medication a day including the usual immunosuppressants. Because his liver is currently not  naturally producing albumin his stomach has enlarged so he also has to go to our local  hospital every few days for iv Albumin to help his body process and dispose of the liquid retention through his renal system.

When he had his first transplant at Kings there was nowhere really where parents could be upset and alone so after the transplant we paid for a parents quiet room called the Luke Bettelley room which used to be on Mountbatton ward opposite PICU at Kings College Hospital before its refurbishment last year. Some other parents on here may well have used it?
We are just waiting for 'that' phone call now. http://news.bbc.co.uk/1/hi/health/313864.stm

[Molly]

Welcome to Transplant Kids David. Everyone here is very friendly and supportive, so I hope you find these forums helpful. I'm Molly and I received a small bowel, liver and pancreas transplant at Birmingham Children's Hospital (BCH) in November 2006, when I was 16. I've just celebrated my 19th birthday. I visited Kings briefly when I first developed liver failure, but was then referred on to BCH.

I'm glad to hear that your son Luke was well for so long after his transplant, but I'm sorry to hear that things aren't going so smoothly now. How are you feeling now he's on the transplant list again? And how is Luke feeling about it all? There are a couple of other families here on Transplant Kids who have a child who is currently waiting for a second transplant.

The parents quiet room you paid for at Kings sounds lovely, what a great idea.

Take care,
Moll x x

[Emma]

Welcome to Transplant Kids David. I'm Emma, i received a heart transplant at Great Ormond Street Children's Hospital just over a year ago, when i was 12, I'm now 14 .

I'm glad to hear that Luke was able to enjoy some good after transplant life for a long time before things not going as smoothly. I hope that he gets his second call soon.

Best Wishes,
Emma x

[julie]

Welcome to transplant kids x My daughter too had a transplant after Acute liver failure, but i was not allowed to be considered as a donor even though i begged to be so, they do not do live donors at BCH still to this day, they were just starting a programme for chronic liver failure last year. Did they find a cause the first time around? It has always been a concern of ours that it may happen again to Abi as no cause was ever found. I really hope Luke gets his second transplant soon, the fluid retention is awful, i know they removed a litre of fluid from Abis abdomen during her op and she was only 16 months old, she put on nearly 3kg in a few days!!! I'm sure many people made good use of your room, it was something the liver ward at BCH was short of as well. Please keep us informed on how Luke is doing.
love Julie and Abi x

[Feline]

Hi Dave
Thank you for introducing yourself and sharing a little about Luke. What a wonderful gift from his Mum!
I am so sorry things aren't going so well for Luke right now and that he's having to spend such alot of time in hospital.
I haven't been to Kings but am there are families in here who no doubt will have been in the special parents room you paid for...we all know what it's like you most definately need to get away from it all to gather your thoughts when our kids are going through such tough times.
I would imagine it's gonna be a lot tougher on Luke and pretty scary stuff for him this time round,he'll not have many(if any) memories of his transplant
28 meds is one heck of a lot and having to have albumin IV's so often must be a hassle..are you far from the hospital?
I truly hope he keeps as well as he can & that his "call" comes very soon.
hugs
Cat x
(Mum to Aaron aged 13, liver & small bowel tx 2000 Birmingham Childrens)

[Dave]

Thank you everyone for your kind messages.

Sadly, when Luke's Liver failed originally our local hospital did not diagnose it quick enough so his blood was slowly poisoned resulting in his brain swelling within his skull causing brain damage so although he is now 12 he only really has a mental age of around a 6 year old and still has problems with fine motor movements like doing up buttons and zips etc. A positive(ish) side of that is that he never ever complains about being in hospital or the tests etc. He is always smiling and is in his own happy world.

We never found out why his liver failed originally and the Doctors say they do not know why it is happening again as it is not rejection.

We are lucky I guess that for ten years we have not had problems with rejection etc, we have seen other children at Kings who are a similar age to Luke and are on their 3rd or even 4th liver.
Thankfully our local hospital is only about a mile away from home but Kings is an absolute pain to get to, on average it is a 4 hour round trip if the traffic is on our side.

[Emma]

I'm sorry to hear about Luke's brain damage.
4 hours is quite a way to travel to a hospital, are you seen by Kings much?

Emma x

[joby81]

Hi welcome to the site , i am jo mum to jack and noah , they have both had double transplants , jack 2 livers and noah a liver and kidney ! i hope you get the call your waiting for very soon hun .

[Molly]

Aww, I'm sorry to hear that Dave. It must be a worry to you not knowing what caused the liver failure both times. Glad to hear that your local hospital is so close, but that's quite a long journey to Kings. I met a little girl in hospital when I had my transplant who had flown over to the UK from Denmark!

By the way Jo, I had no idea what your boys' full names were, lol I've always heard you call them Jay and Nowie and hadn't given it a second thought! Noah is a lovely name, my younger brother was very nearly called that

Take care,
Moll x x

[joby81]

By the way Jo, I had no idea what your boys' full names were, lol I've always heard you call them Jay and Nowie and hadn't given it a second thought! Noah is a lovely name, my younger brother was very nearly called that

Take care,
Moll x x

LOL i dont know why i called them by their proper names , i never call the Jack and Noah 

[Molly]

By the way Jo, I had no idea what your boys' full names were, lol I've always heard you call them Jay and Nowie and hadn't given it a second thought! Noah is a lovely name, my younger brother was very nearly called that

Take care,
Moll x x

LOL i dont know why i called them by their proper names , i never call the Jack and Noah 

Lol

[popstar]

Hi,
David im poppy im also under the care of kings college london as i always have been im  12 but had my liver tx when i was 1  in april 1998  but have had 37 operations since    and and im still stuck on tpn and will still may need another transplant a bowel   , but i am really well i live in the isle of wight so i have a long journey too   when going to kings  i go evrey 8 weeks but at the moment one of my 2 hick man lines are blocked so its been more visits lately and i think my mum had used the room at mountbatten ward  but just 2 say hello and good luck i hope luke gets hes call soon   poppyxxxxxxxxxxx