adam

[lesley]

Hi

We now have a date for Adam to go into Kings for his small bowel transplant assessment.
This week Adam will have GFR kidney function test done at our  local hospital which is part of the assessment. Adam will also have a cardio echo scan done locally as part of the assessment this will make life a little easier having test done local.
take care Lesley

[Molly]

Glad to hear that you now have a date Lesley. Getting a few tests done locally sounds sensible. How long will his small bowel transplant assessment take? How is Adam feeling about it? My friend who had a small bowel transplant at Kings just less than 3 weeks ago is doing really well at the moment

Take care,
Moll x x

[lesley]

Hi Molly

The assessment wont take long to do as all the bowel ones are done already. We go on day ward tues,wed and thurs then we can go home if everything gets done and they are happy.It has really helped having some of the tests done and the docs said they never want to go in Adams bowel again. The bowel test were done at gosh and didn't go to plan.
 Its really good news for your friend we are pleased its all going well for her. It gives us confidence when we hear of others doing well at the same hos.
Adam is a little nervous but he wants his life back.
I have read your updates and Emma's and pleased you are both doing well.
Take care Lesley

[Molly]

Hi Lesley,
That sounds like a short assessment, mine at BCH 3 years ago lasted for a fortnight. As well as some tests I had loads of information and discussion sessions. I hope all goes well at Adam's assessment, I'll be thinking of you. I'm not sure if you'll be on the same ward as my friend is, but you might meet her. She's called Imogen and is 16. I can definitely understand Adam's nervousness. I know Kings will do things differently from BCH, but Adam is always welcome to contact me (as are you) if he'd like to talk about it.
Take care,
Moll x x

[lesley]

Hi Molly

I think for us the assessment period isn't long because they know what is wrong with Adam's bowel.
Also he is having test done at Poole hospital, i have been told by others that at BCH they do not accept other hospital's test results they like to do them. It seems very different at Kings, BCH wouldn't see Adam when his local doctors asked them, that is why we got sent to GOSH. It seems to us that it is joint between GOSH and Kings and if they think he does need a transplant both hospital are on the panel .

Thank you for all your support Molly
Lesley

[Molly]

They knew what was wrong with my bowel before my assessment. I had short gut syndrome, the bowel I had was fine, but I only had 30cm of my small intestine (I had the rest surgically removed when I was 6 months old). I needed a transplant because the TPN had caused my liver to fail. I had a small bowel, liver and pancreas transplant.

I think hospitals just have different approaches, BCH have a very wholistic approach - when I had my assessment as well as all the tests I also met with play specialists, a dietician, the school teachers, the liver nurses, the surgeons, the consultants, a psychologist and my parents met with the psychologist separately... And we were given loads of written and oral information about what to expect after my transplant with regards to the surgical side of things, recovery, eating and artificial feeding,  spending time in ICU, the various drains and IVs I'd have to start with, school and education, medications, psychological stuff, potential complications, immunosuppression, lifestyle, follow up blood tests, clinics, scopes and hospital stays, having and managing an illeostomy... That reminds me just how overwhelming it all was at the time!

Kings and BCH do seem to do things very differently. For example, after my transplant I was weaned off TPN and onto NG feeds and then as I've gradually learnt to eat and built up my eating my NG feeds have gradually been reduced. Now I'm hoping that I will be able to stop NG feeds and see if I can sustain my weight through normal eating plus high calorie supplements. But Imogen is already off TPN and enteral feeds just 3 weeks after her transplant.

Do you know why BCH wouldn't see Adam? I used to be under GOSH for managing my TPN until my liver began to fail and then I was referred to a few different hospitals (Kings to find out why my liver was failing, then Addenbrookes which is a UK adult small bowel centre) and then onto BCH. I was listed the day before my 16th birthday. GOSH are great though so I think it's good that they're now starting to do small bowel transplants with Kings.

Take care,
Molly x

[Emma]

I'm glad to hear Adam has a date for his assestment. I hope it goes well, please do let us know how he gets on

Emma x

[Feline]

Good news on the assessment Lesley!
Must be mixed emotions though..glad it's beginning to happen but daunting also as it brings it all that bit closer I am sure ((hugs))
Like Molly's assessment Aaron's was about 12 days of various investigations also they knew he had short bowel syndrome due to NEC (27cms of native small bowel left)
Molly Aaron was off TPN within about 3 weeks he continued on overnight enteral via his gastrostomy to boost his calories for a few months, he did start to eat naturally within weeks also but you had years of not eating orally hunny BCH believed a mix of Pred munchies and natural desire with having a healthy functioning bowel spurred Aaron into eating food. I guess everyone is different and I know all too well about hospitals doing things differently we had a few shocks to our system from Edinburgh to Birmingham
I look forward to hearing more Lesley,hope Adam's GFR and other tests go well...
hugs
Cat x

[Molly]

It took me longer to get off TPN because of the various (but very rare, Lesley) complications I had post transplant, so I came off it completely about 6 weeks after my transplant. That's great that Aaron got off enteral feeds so soon, I'm still on them over 3 years post transplant Does Aaron feel hunger? I've never felt hunger. I was surprised that my friend at Kings is off both TPN and enteral feeds less than 3 weeks after her transplant though. I was surprised at the differences between GOSH and BCH when I moved hospitals.

Moll x x

[lesley]

Hi

Help i'm a little confused by things, Adam has always been dairy,egg,wheat and soya free. The doctors tell me if Adam has a transplant he will be able to eat what ever he wants i can't get my head round this one. Surely its also to do with ones body chemistry what it can tolerate.
Adam lost a 3rd of large and small bowel when he was born but managed to come off tpn and had his stoma reversed at 6 months old. He always has had bowel problems but we always seemed to just get by. When he was 6 he had adhesion's but they removed them successfully but when he was 13 he had adhesion's again. This time they came back very aggressively and caused his bowel to go into failure, his bowel is now locked opened and cannot function at all its a funnel . They couldn't do a mri scan because the fluid just poured out of him this is why he dehydrates and has saline bags each day as well as tpn. Both bowels have turned to a lump of concrete the doctors are not sure if they can get the colon out.
I had a phone call from gosh and we have to go in and stay for a few nights to do some more tests on Adams kidney's when they looked at his liver they found he had polycystic kidneys. They just need to know they are functioning well i think they are. Adam does have a gastrostomy and we tried mct but he didn't tolerate, he also doesn't tolerate dioralyte it make his salt  and potassium levels go all over the place.  Molly i do not know why BCH would not see him. Thank you and take care Lesley

[Molly]

I was always egg, milk and glueten free pre-transplant (not that it mattered as I barely ate anything), but I think that was just a precaution, I don't think it was known for definite whether I was intolerant to those foods or not. I can eat anything now though. I'm not quite sure what affects intolerances, whether it's to do with the bowel or the chemistry in the body. Could you question that further?

Sorry to hear about Adam's complex medical history. I had an intersusseption (sp?) of my small intestine when I was 6 months old which led to all but 30cm of it being surgically removed. I was then put onto TPN and managed fine on that until I was 14/15 and it began to cause my liver to fail.

I hope the kidney tests all come back ok Lesley. Pre-transplant I had a jejunal tube (as it was thought that my stomach didn't work properly, although it seems to work fine now I've received my transplant), but I could never tolerate any significant amounts of enteral feed through it.

Take care,
Moll x x

[lesley]

Hi,

Adam has had GFR test done and all OK good news.  Adam has had a bad cough and cold so another lot of antibiotics his 5th lot since mid December but he is on the mend again.
I'm beginning to feel the strain of everything now Adam said i have been a little short with every one.I feel that its all out of my control and i don't like it, so god knows how Adam is feeling.
Hope you are all well and take care Lesley

[Molly]

Hi Lesley,
Glad the GFR results were good Sorry to hear that Adam is on yet another lot of antibiotics, but I'm glad that they seem to be doing the job though.
I can completely understand you feeling it's out of your control. Hugs. If you or Adam need someone to talk to I'm always here. Hopefully you'll get some answers and a direction at Adam's transplant assessment.
Take care,
Moll x x

[Emma]

I'm glad that the GFR results were good.  I hope adam feels a little better.  I can too understand about you feeling its out of your control.  Once Adam has had his transplant assessment hopefully you'l have more control.

Emma x

[lesley]

Hi Molly and Emma

Thank you for all your support.

Lesley