adam

[Feline]

Hi Lesley So glad Adam's kidneys are looking good. The rollercoaster ride does get fast and leaves you feeling quite giddy rest assured it will slow down a bit once again,lulling you into a fairly comfortable place..just afore it takes off again ...sorry to hear Adam's got a rotten cold there's so much doing their rounds just now.
Keep us updated on the assessment,hopefully the wait for transplant wont be long...
hugs
Cat x

[lesley]

Hi Cat
Thank you for the support.
It is like a roller coaster and we have been on and off for nearly sixteen years now i just want to get off and stay off.
We have had a rough time with doctors over the years Adam is not text book problems. A few years ago the doctors all discharged Adam saying he didn't have bowel problems and he had no one looking after him but the community doctor. The doctor who looked after Adam just give him strong painkillers until they didn't work anymore. Part of me feels if he had better care and the doctors believed me would he have intestinal failure now .Very mixed feeling as the doctors who discharged him are also the ones that saved his life, for me i think things are coming to a head. The doctors locally have  said they are trying to put it right but they can't the damage is to great on Adams bowel. The adhesion are now on his tummy and all over his liver,small and large bowel.
We do have a lot of positives as well Adam is strong and has a great sense of humor I'm so proud of him. When ever he is in hospital his so positive and takes it all in and is starting to manage the doctors and ask questions.
I'm sure once we have the test done we will feel better about everything.
Take care Lesley

[Feline]

Not much to add Lesley..just that I know that sense of the alarm bells,that as a parent,you sense things that  should be addressed/done,that knowing you've not  been listened to,it makes you mad, with "them that know"...well I learned a long time ago they don't always know..and us as parents have a natural basic instinct they dont,we need to speak up for our kids and make our voices heard,even if it's to be secure in the knowledge we did try...personally I can look back and see where things went wrong but have to leave them there in the past otherwise they'd torment our present it's the future we look to hey 
((hugs))
Cat x

[lesley]

Hi Everyone

Adam has a very busy month a head this week Monday he has a echocardiogram. Tues he is having his teeth looked at in morn and extra English lesson in the afternoon. Weds he will see the psychologist.  The following week GOSH and the week after that Kings. Then his exams start on the 3rd march. Our C/N comes in every morning now.
I'm a little worried about how tired he will get but I'm sure he will cope or sleep through it all.

Take care Lesley

[Molly]

Wow, that sounds like a really busy month for Adam. I hope everything goes smoothly and Adam manages to find some time to rest in between everything. I hope he can have a special day for his birthday in amongst all of that. And I hope his exams go ok and he doesn't get too stressed about them. What school year is he in? Will they be mocks or actual exams?

Take care,
Moll x x

[lesley]

Hi Molly


Adam won't be doing any mocks as he has home tuition, he has already sat two maths modules and one English. I'm so proud of him he hasn't been to school now since he was 13 years old and gets roughly five hours a week tuition. The exams he will sit in March will be all the science's they all have to be done on the same day but he will do them at home and he is allowed breaks to rest.
He really wants to go to college, he will need five C's or above.In the exams he has sat he got C's
the science's he will sit higher i hope it goes well for him. He is in year 11, how did you find doing your exams as you had your transplant at roughly the same time.
If Adam remains on tpn i cannot see him going to college at present but i must be more positive.
I'm sure he will enjoy his birthday in or out of hospital.If Adam get tired doesn't matter where we are he will just go to sleep.
Thank you Molly
Take care Lesley

[Molly]

Hi Lesley,

It sounds like Adam is doing really well academically I had home tuition for my two GSCE years as that was before and after my transplant and I wasn't well enough to attend school. But luckily that's the only school I've had to miss. I sat my GCSEs at home in year 11 (6 months after my transplant) and acheived 6 GCSEs (but I'd taken a couple early) which got me a place at sixth form.

That sounds a lot of exams for Adam to do in one day, I really hope they go well for him. And I hope he achieves his 5 C or above grades. Even if he can't get into college in September hopefully he'll be able to go in the future. I really hope you can find some way to enable him to attend college though. What subjects would he like to study at A Level?

Sorry to hear Adam gets so tired, but that's good that he can sleep anywhere Wish him happy birthday from me

Take care,
Moll x x

[Emma]

It sounds like Adam is doing great academically, i had a lot of home tuition until my transplant (which is over a year ago).

Wish him happy birthday from me to

Emma x

[Feline]

Adam has got some week ahead..hope it all goes well for him x

[Rose]

Hi lesley

Wow. I thought my weeks were busy. Bless him. He'll do fantastic. What a proud mum you'll be when he gets to college.

With lots of love
Leah

[lesley]

Hi

Adam's assessment at GOSH and KINGS went well i think it left us with very mixed feelings and a rollercoaster of a couple of weeks.
 The area we live in doesn't give the BCG VACINNATION the pct's stopped this a few years ago Kings think he should have but will delay Adam going on transplant list for six months. Also they said he will also need a new vaccine called the ROTAVIRUS that one stops you going on list for six weeks so that's not to bad. I have rang local hos they don't stock bcg nor does my gp, we have been told this is going to be a problem in our area.Will let you know how we get on but not happy at the long delay has any one else had this problem?.
The transplant co ordinator was lovely and very helpfull as was all the staff on the ward. They really put us at ease and listened to Adam and us.
We just waite again now the next meeting is on 9/3 so not to long.
They also told us due to Adam's size it will have to be a small size bowel and this would mean he will be on the list for longer, at first they thought he would be suitable for a adult but he is not.

Lesley

[Feline]

Hey Lesley
Glad the tx assessment went well.
I don't know about everyone else I can only speak for what we experienced with Aaron and yes he had to have a range of immunizations he hadn't had any due to living in hospital most of his days,he had to have "killed" vaccines in some cases as he was still an inpatientcouldn't have live as it would be a risk to other patients) he had his polio,tetanus,diptheria and chickenpox...our schools her too have stopped giving the TB jab in secondary school. It's so Adam has as much immunity against life threatening diseases as possible before his transplant as post transplant there's so many are only available as live vaccines and he'll not be allowed any of them.
I learn something new every day..I didn't know there was a vaccine against rotavirus. It's a particularitly nasty one for intestinal transplantees. Over the years Aaron has been last on theatre lists as he's been positive to VRE(Vancomycin Resistant Enterocolitus) and rotavirus so he wouldn't put anyone else at risk.
I realise it must be disappointing adding more time to the wait but it will appen quickly,I assume Adam is in reasonably good health that they are prepared to use extra time for immunology stuff?
If they wish Adam to ave the BCG and your locals don't have it then all they need to do is prescribe it and it can be collected from your pharmacy or given at local hospital surely?
Thanks for the update....
hugs
Cat x

[lesley]

Hi Cat

We are told the Rotavirus is very new my local hos doesn't stock and our gp has refused to order even with kings sending him a fax. Monday i will ring transplant coordinator and let her know. Both will not help with BCG jab either wouldn't it be nice if for once they would say no prob i will sort it. I'm sure it will get sorted and i will have a few more grey hairs. My gp nurse said i should take Adam to the tb clinic but surely that would but him at risk i did say he hasn't got tb we want to prevent it.
I will email his consultant at Southampton as he might be able to help. I want Adam to have them both as its only six months and he is stable at the moment. We were told that if he becomes unstable again his chances of survival would go down but i prefer to be more positive. 
The VRE  sorry what does that mean Adam can't have vancomycin one of his allergy's.
Adam is so tired now and he has his gcse exam's on wednesday bless him.
Hope you are all well take care Lesley

[Emma]

Glad to hear the transplant assessment went well and that you found the staff were good. I'm sorry to hear about the problems your having with the vaccines. Hope there soon sorted out.

I hope Adam does well on his GCSE exams on Wednesday.

Emma x

[Molly]

Glad to hear that the transplant assessment went well. It definitely is a rollercoaster of emotions. Hugs. Glad the transplant co-ordinator and ward staff were nice and that it's not too long til your next appt.

Sorry to hear about the vaccination problems. I had my BCG vaccination before my transplant as I had it with the rest of my year at secondary school. I think that they stopped it the following year though. I hope you can get it sorted soon, I can understand you being frustrated. It's a good idea to get as up to date with vaccinations pre-transplant as possible, I had a few before being listed but I can't remember which ones. I didn't know that there was a rotavirus vaccine either.

Sorry to hear that Adam is very tired after all of that, but it would exhaust anyone! Good luck to him for his exams.

Moll x x