's latest

July 30, 2009

Hi All

Again many thanks for your support. It seems that the surgeon has brought

forward my appontment to see him in clinic after the Gastroscopy from the 24th

August to 17th August. I received the appointment letter this morning and

thought that they had got the date wrong so I phoned them up andit is correct.

So I can now look forward to having the camera (without sedation this time I

hope) on the Tuesday 11th August and a review appointment on the 17th August to

discuss what options are open to me. See they want to see where the Pej enters

my small intestine so that they can work out how much bowel to remove or would

they be able to get away with just stitching the hole up and this cannot be done

until they visualise the inside of the intestine. Good. At least things are

moving forward and who knows with me not having sedation with the caamera they

may see where the strictures are.

from the UK

________________________________

From: manchesterpippa <manchesterpippa@...>

achalasia

Sent: Wednesday, July 29, 2009 2:27:59 PM

Subject: Re: 's latest

Hi

I'm so glad that at last you have a surgeon to help you after all that you have

been through.

You are going to be busy by the sounds of it over the next few weeks but at

least things are getting done for you now.

You were right to ask as many questions as you wanted and it was good to hear

that the surgeon was happy to answer everyone of them.

Love

Pippa x

>

> Hi All

> Saw my surgeon in clinic yesterday and at last I left feeling that something

is being done. The poor man was trying to get away but I kept asking questions

but as he said as long as I was happy he didn't mind in the least. Well the good

news is that we had quite a chat and I asked him whether he does the laser

ablation on ectomy anastomosis instead of dilatations, well he say that

personally he didn't but there was aother surgeon that works with him in the

hospital trust that does sometimes do this operation and that really it was

still in it's infancy so he says. He tells me that he wants to see me on the

24th of August after I have had the Gastroscopy on the 11th August. He wants to

visualise the damage done by the Pej feeding tube done to my small intestine and

with luck at opeation he may get away with only having to close the hole that

the Pej leaves once the tube is taken out and if not he will do a mini

laparotomy and take a portion of the small

> bowel out and create an asatomosis with the two ends. While I am asleep he

says that he will have a Hickman line inserted near my collarbone for TPN feeds.

How long would I be in hospital for I asked, a while he says. Would I have the

education to manage the line at home for the TPN feeds, again he said yes and

that I wouldn't be allowed home until I was happy with everything as he wants my

intestines to rest while I have the line in. When I have the Gastroscopy he says

he will be paying particular attention to where my Pej feeding tube enters the

small bowel and especially the ectomy anastomosis and the pylorus sphincter to

see why the Nuclear Medicine scan showed a holdup there. He showed me the scan

results and he says there is a problem there and that he wants to see for

himself with the camera. All the results of any possable biopsies will be back

and in his hands by the time I see him in clinic on the 24th August. So now I

wait for this

> appointment to see him and we will fully discuss what is to be done but rest

assured he said that he will do something about my bile leaks and any swallowing

difficulties that I have. Phew, I waffle on. Tell me off if you want to.

>

> from the UK

>

September 4, 2009

Dear ,

Why wait until Monday morning? I suggest that you get in touch now and buy

yourself 3 days. If you wait until Monday morning it may be difficult to get

through, with all the weekend problems arising.

From: Hulmes <christine.hulmes@...>

Subject: 's latest

achalasia

Date: Friday, 4 September, 2009, 1:08 PM

Hi All

Things are getting bad now. I have had a date for pre-op assessment to see if I

am fit for a general anaesthetic and that is November 16th. Quite a time away.

The problem now is that my feeding tube is blocking off and I am having

difficulty flushing it out and the occlusion alarms have started to sound while

trying to have a feed overnight even at a slow rate. I will have to contact Mr

Hartley's secretary on Monday morning if the situation does not improve as I no

longer think my feeding tube will last that long and will need removing and the

Hickman line inserted sooner than November 16th. It has already started to

affect my weight and although losing 1 1/2kilos over 2 days isn't a lot it is to

me as I only weigh 45 kilos to start with 2 weeks ago. The problem is even if I

have to wait until November for the pre-op how much longer after that would I

have to wait for the operation to remove my feeding tube, insert the Hickman

line for TPN feeds and

perhaps remove part of my small intestine while I am asleep. I am having all

this done in the Royal in Liverpool.

from the UK

October 26, 2009

Hello All

So glad that things went ok for Tim. Many Thanks to everyone for your support.

Just landed home after a month in hospital in Liverpool. I had my feeding tube

removed and afterwards the surgeon said that if I had left it in any longer then

a portion of the bowel would have died. When he removed my feeding tube the

baloon end was as big as a golf ball and was embeded in bowel wall leaving 5%

room for food and drink to go round. No wonder that I had such big leaks as the

surgeon had to do a Laparotomy when he removed the feeding tube to seal the hole

from within. On top of that I was informed that I had MRSA in the stoma which is

almost closed now. The next step was antibiotics iv and an NJ feeding tube so

that I can have feeds temporarily while the Laparatomy site heals. I came home

on leave from the hospital last Friday and have to return on November 2nd for a

Jejunostomy. At the time they are to try to do the Jejunostomy endoscaply via

the camera if you

know what I mean (the specialists are only 50% certain that they will be able

to do it this way and if they fail they will have to take me back to theatre for

another Laparatomy and do the Jejunostomy the conventional way. So i am home

relaxing for a week withe the NJ is situ which is uncomfortable but enable me to

have nourishment. They have to wait until next week aparently so that the

internal stitches of the last Laparotomy can have time to heal and have a chance

for the MRSA to go away for which I have weekly swabs. When they put the NJ tube

in they scratched one side of my throat which left me with an ulcer for which I

am having medication.

from the UK

________________________________

From: Tim <timwilson12@...>

achalasia

Sent: Mon, October 5, 2009 12:11:56 PM

Subject: My recent TSE/Cardioplasty.

Dear Friends,

I have placed a short account of my recent operation here:

http://groups. / group/achalasia/ files/Member% 20Stories%

20%26%20History/ Tim%20-%20My% 20TSE%20experien ce.doc

Thanks for everyone's support!! I am back home now, taking things very easy as I

am very tired as you can expect.

If anyone has any questions to ask about the procedure ask away on this thread.

I will do my best to answer and I shall see Mr Maynard at the end of the month

If there is anything you would like me to ask him.

Thanks again!!

Regards

Tim

October 26, 2009

Dear ,

Welcome Back. It must be a relief to you to see your home again, albeit for just

a few days. We have been thinking about you while you were away and Tim, bless

him, has been quite worried because we hadn't heard from you.

You still have quite a bit to go through before you are done with all this. Try

to keep your spirits up and if you need some support you know where we are.

Best wishes and love from Ann xx

From: Hulmes <christine.hulmes@...>

Subject: 's latest

achalasia , " Ann Higgs " <lilac_blossom_lady@...>,

" Isabella Arnold " <arnoldisabella@...>, " Tim "

<timwilson12@...>

Date: Monday, 26 October, 2009, 12:08