Re: Newbie/Jo/Steve

[Guest guest]

Hi Steve

Jo take heed to what Steve is saying I know some of this I have

already e-mailed you privatly but its great advice and help.

Steve sorry I didn't mention you earlier but Jo, Steve was another

one of the group who gave me so much help and support I couldn't

have done it without any of them. In fact I kept in contact with

Ann, and Steve (also Jan who is another member) when I was in

hopital having my surgery.

It might be worth pursuing the idea of looking around for another

hospital to get your surgery done quicker.

My surgeon specializes in Upper Gastro problems I had mine done at

Kettering Hospital by Mr (surgeon) my consultant was called

Mr Chiltern and they are both experienced in Achalasia. Kettering

isn't too far away from you either. If you want any numbers of these

two men I still have them just let me know.

Speak soon

Pippa x

ps Yes I know I sent this at 3.40am but you know what its like this

time of year three kids in the house my brain is in overdrive at the

momnet with so much stuff going round it. right I am back off to bed

now.

>

> Jo,

>

> Hi, I am one of the ones in London.

>

> You seem to be waiting a long time for your operation. Have you

heard of patient choice? The details are on

http://www.nhs.uk/England/Choice/ I think this is now fully

operational but I did hear that there could be a delay. Your GP

should have a choice of up to four local hospitals for your

procedure. If you enquire at the surgery where they are you can

then ask the hospitals how long their waiting list is. I think, but

you will need to check this, that you may be able to choose any NHS

Foundation Trust across the country but again the implementation of

this could have been delayed. I do not know if you have any locally

but they could be an option.

>

> Then as others have said you also need to consider the experience

of the hospitals surgeons. Some hospitals have very informative web

sites, some don't. Hospitals with a dedicated Upper

Gastrointestinal Service tend to be the more experienced in this

type of surgery. However, with 6,000 Achalasians in the UK and only

approximately 150 acute Trusts most hospitals do have some

experience somewhere in the Trust.

>

> In terms of going out. At times when I was bad I used to go out

with friends and just sip a glass of wine, no food at all. For me

it was psychologically important to continue as normal. I would

have the odd occasion when I couldn't make it through the glass of

wine but I would still sit there and participate in the

conversation. For me it was important not to let the disease

control me. But, I admit, in the early days of diagnosis I was all

over the place but at 21 I didn't really care that much (I am now 43

and care very much, the care free attitude of youth, how I miss

it). Incidentally, I sometimes found Lager easier than wine as I

think heavier fluids have sometimes been helpful for me but if you

do try it don't go for a large glass, far too daunting a task to

drink.

>

> Has anyone advised you to try the supplement drinks? They don't

taste that great but they provide an awful lot of nutrition. I can

only do one or two a day at most but they give you those important

minerals, protein and vitamins that we tend to lack when things are

bad. You can get them on prescription and at £2.50 a carton I

suggest you try your GP, but it may be good to buy one from the

chemist to see if you manage it.

>

> Have you discovered anything that helps you get your food down

temporarily? Some of us have found good positions to lie/sit in.

For example, I used to lean on my left side, that worked for a

while. I have also found a bath helps (as this changes the pressure

in your chest) and I have even resorted to flapping my arms.

>

> Once again these are all personal suggestions. Other people may

say that none of these have worked for them. You will find out what

helps you in time.

>

> Try and enjoy some of the festive break.

>

> STEVE

>

> Newbie

>

> Thank you all so much for your support - its great to have

received so

> many messages so quickly - I certainly don't feel alone in

handling

> this.

>

> For those of you who asked, I'm 31 and I live in the Midlands in

the

> UK. From what I can gather, many of you are in the US.

>

> I does sound like the surgery is my best option. I went out for a

> meal last night for Christmas and ordered soup - I only managed a

few

> mouthfuls before it got stuck and I had to disappear to the loo. I

> know that I was anxious before the meal and concerned about how I

was

> going to manage to eat anything. My friends all understand

although

> my boyfriend I think finds it frustrating cos we don't go out for

> meals or go out drinking like we used to.

>

> I've been on the waiting list since November and have been told it

> will be February or March before I reach the start of the waiting

list.

>

> Christmas day will be tough, we've got family coming to us and I'm

a

> bit anxious about that but know that I just need to stay positive

and

> try not to panic.

>

> Thank you all for your messages, it really helps to know there are

> people out there who understand.

>

>

>

>

>

>

>

>

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