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Re: Re: R. D. DAY

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Must you write in capital letters. It makes it hard to read what you write.

Anyway isn't there something in the e-mailetiquette about writting in caps?

from the UK

From: aja-tai Romer <nazaja_04@...>

achalasia

Sent: Monday, February 28, 2011 5:25 PM

Subject: Re: R. D. DAY

 

HI GROUP, i REALLY DONT KNOW WHAT TO POST, BUT I DO KNOW THAT I WANTED TO DO MY

PART IN SUPPOT OF THIS DAY.  ITS BEEN A CRAZY NINE MONTHS FOR ME BATTLING WITH

THIS CONDITION OF OURS AND IM SURE ALOT LONGER FOR OTHERS OF YOU.  IM JUST

GALD

THAT NOW I CAN LEAD A MOSTLY NORMAL LIFE AGAIN, BECAUSE FOR A SHORT WHILE I

STARTED TO LOSE HOPE.  HOPEFULLY WE CAN CONTINUE TO DO THINGS LIKE THIS AND

RAISE AWHERENESS BECAUSE IT IS SO NEEDED.  HOPE EVERYONE IS DOING WELL AND IS

IN

GOOD SPIRITS! LET TODAY BE A GOOD DAY!!  :-D 

                                           

                                   

                                            AJA

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Yes, i did have a bad day yesterday and appologise for any offence that my post

caused. my bad days seem to be increasing right now and they are leaving me a

bit stressed.

from the UK

From: Sandy <sandycarroll@...>

achalasia

Sent: Tuesday, March 1, 2011 4:32 PM

Subject: Re: R. D. DAY

 

Just one voice, but I don't care how people post here, as long as they post and

find support. I'm guessing was having a bad moment and did not mean

this post to sound rude.

Aja-tai, your comments are welcome anyway you want to send them.

Sandy

>

> Must you write in capital letters. It makes it hard to read what you write.

Anyway isn't there something in the e-mailetiquette about writting in caps?

> from the UK

>

>

> From: aja-tai Romer <nazaja_04@...>

> achalasia

> Sent: Monday, February 28, 2011 5:25 PM

> Subject: Re: R. D. DAY

>

>

>  

> HI GROUP, i REALLY DONT KNOW WHAT TO POST, BUT I DO KNOW THAT I WANTED TO DO

MY

> PART IN SUPPOT OF THIS DAY.  ITS BEEN A CRAZY NINE MONTHS FOR ME BATTLING

WITH

> THIS CONDITION OF OURS AND IM SURE ALOT LONGER FOR OTHERS OF YOU.  IM

JUST GALD

> THAT NOW I CAN LEAD A MOSTLY NORMAL LIFE AGAIN, BECAUSE FOR A SHORT WHILE I

> STARTED TO LOSE HOPE.  HOPEFULLY WE CAN CONTINUE TO DO THINGS LIKE THIS AND

> RAISE AWHERENESS BECAUSE IT IS SO NEEDED.  HOPE EVERYONE IS DOING WELL AND

IS IN

> GOOD SPIRITS! LET TODAY BE A GOOD DAY!!  :-D 

>

>                        

                       

                       

       

>                        

                    AJA

>

>

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Hi Kay

Thanks for your post. I have a really bad chest infection right now due to

reflux problems and aspiration but as you say we'll cope. Take each day as it

comes and deal with each problem as they crop up. Don't let anything get you

down. Keep me posted as to how things are with you.

from the UK (North West Wales)

From: Kay Davies <kayf.davies@...>

achalasia

Sent: Wednesday, March 2, 2011 10:52 PM

Subject: Re: R. D. DAY

 

Hi

I too am having a really bad time of it at the moment. I am so sorry you are

too. I feel at the moment that the Achalasia is controlling my life. I will get

through this as you will. I had such good relief for the first few years after

my myotomy and then over the last year things have become very bad again.

At the moment things just seem like a relentless daily struggle to get enough

food down. Hang in there. This is the place where people really understand. All

the best

Kay

nr Oxford, UK

> >

> > Must you write in capital letters. It makes it hard to read what you write.

Anyway isn't there something in the e-mailetiquette about writting in caps?

> > from the UK

> >

> >

> > From: aja-tai Romer <nazaja_04@>

> > achalasia

> > Sent: Monday, February 28, 2011 5:25 PM

> > Subject: Re: R. D. DAY

> >

> >

> >  

> > HI GROUP, i REALLY DONT KNOW WHAT TO POST, BUT I DO KNOW THAT I WANTED TO DO

MY

> > PART IN SUPPOT OF THIS DAY.  ITS BEEN A CRAZY NINE MONTHS FOR ME

BATTLING WITH

> > THIS CONDITION OF OURS AND IM SURE ALOT LONGER FOR OTHERS OF

YOU.  IM JUST GALD

> > THAT NOW I CAN LEAD A MOSTLY NORMAL LIFE AGAIN, BECAUSE FOR A SHORT WHILE I

> > STARTED TO LOSE HOPE.  HOPEFULLY WE CAN CONTINUE TO DO THINGS LIKE

THIS AND

> > RAISE AWHERENESS BECAUSE IT IS SO NEEDED.  HOPE EVERYONE IS DOING

WELL AND IS IN

> > GOOD SPIRITS! LET TODAY BE A GOOD DAY!!  :-D 

> >

> >        

       

       

       

       

       

       

       

       

       

> >        

       

       

       

       

    AJA

> >

> >

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Hi Kay

My chest infection is getting better but i am still a little crackly. I too find

it hard to take in enough calories and in the past lost a lot of weight because

of it. In the end the doctors sugested a jejunostomy feeding tube to help

supplemente the calorie intake every day. So i am lucky in a way that i can use

the feeding pump overnight and get anything up to 800- 900 calories that way and

eat what i can during the day. It helps keep my weight constant. i have a

malabsorbtion problem you see that is one reason that they wnated me on

overnight feeds, never mind. I know what you mean about those build up drinks

though. Urgh, horrible.

from the UK

From: Kay Davies <kayf.davies@...>

achalasia

Sent: Friday, March 4, 2011 1:15 PM

Subject: Re: R. D. DAY

 

Hi

so lovely to chat with you. I am pleased to say I don't have huge reflux

problems although have woken up choking a couple of times recently which is

pretty rare these days. Something I will keep an eye on and have adjusted my

pillows accordingly!

I am resorting at the moment to calorie counting to try to get my intake up. It

makes me feel like I am taking a bit more control of my well being, and I always

cope better when I am in control! I find I can managed 1000 fairly easily but

more than that becomes a bit of a struggle when i am on a soft food diet. I have

all the tools though (seen a dietician recently who was really helpful and

practical about how to stay well without resorting to horrid build up drinks!)

so I know I can manage this. Just taking one day at a time though like you said.

this condition is tough. I know I can survive and manage it but it would be nice

sometimes to not have to concentrate so hard.

lovely to have found this group and let me know how you are getting on. I will

be thinking of you and hope the chest infection clears up soon.

Kay xx

> > >

> > > Must you write in capital letters. It makes it hard to read what you

write. Anyway isn't there something in the e-mailetiquette about writting in

caps?

> > > from the UK

> > >

> > >

> > > From: aja-tai Romer <nazaja_04@>

> > > achalasia

> > > Sent: Monday, February 28, 2011 5:25 PM

> > > Subject: Re: R. D. DAY

> > >

> > >

> > >  

> > > HI GROUP, i REALLY DONT KNOW WHAT TO POST, BUT I DO KNOW THAT I WANTED TO

DO MY

> > > PART IN SUPPOT OF THIS DAY.  ITS BEEN A CRAZY NINE

MONTHS FOR ME BATTLING WITH

> > > THIS CONDITION OF OURS AND IM SURE ALOT LONGER FOR

OTHERS OF YOU.  IM JUST GALD

> > > THAT NOW I CAN LEAD A MOSTLY NORMAL LIFE AGAIN, BECAUSE FOR A SHORT WHILE

I

> > > STARTED TO LOSE HOPE.  HOPEFULLY WE CAN CONTINUE TO DO

THINGS LIKE THIS AND

> > > RAISE AWHERENESS BECAUSE IT IS SO NEEDED.  HOPE

EVERYONE IS DOING WELL AND IS IN

> > > GOOD SPIRITS! LET TODAY BE A GOOD

DAY!!  :-D 

> > >

> > >    

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

> > >    

   

   

   

   

   

   

   

   

   

    AJA

> > >

> > >

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Hi Kay

It is only in the recent months that i seem to be getting frequent chest

infections, normally i only get them every 4-5 years. The malabsorbsion problem

is shall i say an added problem to the Achalasia and i have had it most of my 53

year life but has only got really bad in the last 4-5 years. Yes, i have had

problems with different Jejunostomy tubes causing problems but the one that i am

using right now i've had for the past 14 months and i've had very little trouble

with it. It makes a difference where the feeding tube is placed and what make

and size is used. The one that i am using right now is pretty good and although

i have little details about it i know that it has a disc to keep in place in the

small intestine and is magnificent. I have had problems with these tubes having

baloons on the end to keep them in place instead of the disc in that there was

some big leakage from the stoma site and that every time i ate or drank anything

it would leak

out. In the end i had an operation to remove that particular tube and the stoma

had to be sealed from the inside outwards through a laparatomy incision, the

surgeon said afterwards that he wasn't suprised that i had such problems with

leakages as the size of the baloon on the feeding tube was blocking my small

intestine by 95% and not letting anything past. It was him that put this new

tube in further down near the groin but i must say that i have had little

problem since.

But i must say this without the overnight feeds my weight would be very low so

with the food that i do manage to eat during the day i am managing to keep my

weight at a fairly steady rate of 53Kg. I do not mind talking about the feeding

tube and if you have any questions that you want to ask fire away and i'll try

to answer any that you have. By the way i am being looked after in The Royal

Liverpool & Broadgrean Hospital on Prescot Street in Liverpool which is a very

large hospital and specialist centre for Achalasia treatments.

from the UK

From: Kay Davies <kayf.davies@...>

achalasia

Sent: Saturday, March 5, 2011 7:32 PM

Subject: Re: R. D. DAY

 

Hi

I am so glad you are on the mend. Do you often get chest infections or is this

the first time? I have been able to avoid them so far which I am glad about.

The feeding tube sounds interesting. I am due to see my consultant soon so am

going to have a good chat about options. Do you mind me asking, is your

malabsorption problem in addition to the Achalasia? Feel free to not talk about

it if you prefer.

I had a great day today. Went out on the back of my husband's motorbike on a

rally in London with loads of other bikers and for a while I didn't think about

my gullet - bliss!!!

Kay xx

> > > >

> > > > Must you write in capital letters. It makes it hard to read what you

write. Anyway isn't there something in the e-mailetiquette about writting in

caps?

> > > > from the UK

> > > >

> > > >

> > > > From: aja-tai Romer <nazaja_04@>

> > > > achalasia

> > > > Sent: Monday, February 28, 2011 5:25 PM

> > > > Subject: Re: R. D. DAY

> > > >

> > > >

> > > > ÃÆ'‚ 

> > > > HI GROUP, i REALLY DONT KNOW WHAT TO POST, BUT I DO KNOW THAT I WANTED

TO DO MY

> > > > PART IN SUPPOT OF THIS DAY.ÃÆ'‚ 

ITS BEEN A CRAZY NINE MONTHS FOR ME BATTLING WITH

> > > > THIS CONDITION OF OURS AND IM SURE ALOT

LONGERÃÆ'‚ FOR OTHERS OF

YOU.ÃÆ'‚  IM JUST GALD

> > > > THAT NOW I CAN LEAD A MOSTLY NORMAL LIFE AGAIN, BECAUSE FOR A SHORT

WHILE I

> > > > STARTED TO LOSE HOPE.ÃÆ'‚ 

HOPEFULLY WE CAN CONTINUE TO DO THINGS LIKE THIS AND

> > > > RAISE AWHERENESS BECAUSE IT IS SO

NEEDED.ÃÆ'‚  HOPE EVERYONE IS DOING WELL

AND IS IN

> > > > GOOD SPIRITS! LET TODAY BE A GOOD

DAY!!ÃÆ'‚ ÃÆ'‚Â\

 :-DÃÆ'‚ 

> > > >

> > > >

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> > > >

> > > >

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Kay

Good Luck when you see Mr Maynard in Oxford for your appointment in a fortnight.

It is about then that i am having my endoscopy and dilation. My chest feels a

lot better today and i can only hope that i am not chesty when i have the scope

done. It dawned on me last night that if i go ahead with this operation that

they sugest called Roux-En-Y Diversion they will need to remove my highly

successfull Jejunostomy feeding tube that i am using and they will have to

re-site either at operation or at a later date. Keep me posted either through

the group or via my e-mail christine.hulmes@... . Please feel free to keep

in touch and let me know how your appointment goes.

from the UK

From: Kay Davies <kayf.davies@...>

achalasia

Sent: Sunday, March 6, 2011 2:17 PM

Subject: Re: R. D. DAY

 

Hi

Thanks so much for being so frank about things. Please feel free to email me

directly if you would prefer. I cope much better when I have as much info as I

can get so I really appreciate you sharing this. I will discuss all these things

with my consultant when I see him in a few weeks time. I am being treated in

Oxford by Mr Nick Maynard who is very experienced with Achalasia so I am very

confident that I can have a good chat with him. He has looked after me for many

years and carried out my myotomy so I have a lot of trust in him.

Keep getting well. I am feeling more on top of things this week now I am keeping

a calorie diary again. I am still struggling to get more than 1000 without

resorting to massive bars of chocolate but hey - every cloud!

Kay xx

> > > > >

> > > > > Must you write in capital letters. It makes it hard to read what you

write. Anyway isn't there something in the e-mailetiquette about writting in

caps?

> > > > > from the UK

> > > > >

> > > > >

> > > > > From: aja-tai Romer <nazaja_04@>

> > > > > achalasia

> > > > > Sent: Monday, February 28, 2011 5:25 PM

> > > > > Subject: Re: R. D. DAY

> > > > >

> > > > >

> > > > >

ÃÆ'Æ'‚ÃÆ'‚ÂÃ\

‚ 

> > > > > HI GROUP, i REALLY DONT KNOW WHAT TO POST, BUT I DO KNOW THAT I WANTED

TO DO MY

> > > > > PART IN SUPPOT OF THIS

DAY.ÃÆ'Æ'‚ÃÆ'‚Ãâ€\

šÃ‚  ITS BEEN A CRAZY NINE MONTHS FOR ME BATTLING WITH

> > > > > THIS CONDITION OF OURS AND IM SURE ALOT

LONGERÃÆ'Æ'‚ÃÆ'‚Ãââ\

‚¬Å¡Ãƒâ€šÃ‚ FOR OTHERS OF

YOU.ÃÆ'Æ'‚ÃÆ'‚Ãâ€\

šÃ‚  IM JUST GALD

> > > > > THAT NOW I CAN LEAD A MOSTLY NORMAL LIFE AGAIN, BECAUSE FOR A SHORT

WHILE I

> > > > > STARTED TO LOSE

HOPE.ÃÆ'Æ'‚ÃÆ'‚Ãââ‚\

¬Å¡Ãƒâ€šÃ‚  HOPEFULLY WE CAN CONTINUE TO DO THINGS LIKE THIS AND

> > > > > RAISE AWHERENESS BECAUSE IT IS SO

NEEDED.ÃÆ'Æ'‚ÃÆ'‚Ãâ\

€šÃ‚  HOPE EVERYONE IS DOING WELL AND IS IN

> > > > > GOOD SPIRITS! LET TODAY BE A GOOD

DAY!!ÃÆ'Æ'‚ÃÆ'‚Ãââ‚\

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‚¬Å¡Ãƒâ€šÃ‚ 

> > > > >

> > > > >

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