Re: I am new too!

[Guest guest]

Dear : I got pregnant while I had achalasia but before I got

properly diagnosed so everyone thought the throwing up was due to the

pregnancy. I posted on the topic. If you have any questions, feel free to

e-mail me directly. My daughter is perfect, and sitting on my lap right now.

Warm regards, Elena

[Guest guest]

Thanks, !

I truly appreciate your input! I have a scheduled follow up with my gastro on

Jan. 7th....I will definitely find out more about the surgery. You are right, I

do need to take care of this one now and take care of myself first. Often ,

hard to do but certainly a priority!

Do you ( or anyone else out there) have suggestions on how to go about finding

the best surgeon? I certainly would be willing to travel...anyone in Boston? I

am from Mass. and know they have great hospitals and I have family there that

could help me. VA just doesn't seem to be that " up " on achalasia. ( who is? ha

ha)

I haven't tried the arginine but certainly would love to find out more. I have

been reading everyone's thoughts/benefits and am willing to try it!

Thanks again...nice to have someone who has been there/done that to " talk " to!

And thanks for the warm welcome!

[Guest guest]

Welcome to the " eavesdropper " ~ ! HA~!

, you sound like you're doing quite well. I have also read and

was told by my Gastro doc that botox can complicate the surgery, so I

would be leary of doing botox again. My doctor said they don't do it

anymore at Baylor because of that. SO....I would stick with the idea of

surgery if I were you. Have you tried the arginine?

I know you said you live two hours away from your surgeon, but what you

are probably looking at is one pre op visit, two days away for surgery,

a visit back a week later, and then a visit back three weeks after that.

I faced a similar situation this summer...I had to take care of my mom,

and I couldn't justify taking any time for myself. Looking back, I

realize that was crazy, because if the primary caretaker is in trouble,

everyone is in trouble!!! I should have gone to the doctor and demanded

that my brother who lives in Florida come over and help out. No one is

more important to those children of yours than you are, but there are

always people who can take care of them briefly.

Looking back, my only regret is that I went through my whole summer and

all of that stress with my mom without paying one bit of attention to

myself. I was afraid I had cancer all summer. It wasn't until I went

back to school this fall that I started going through the fun tests and

that took a long time, as I had to wait a month to see the best doc. It

was worth the wait, but I still feel that I should have placed my own

health on a front burner. Because I recovered SO DANG QUICKLY, I

would highly recommend the surgery prior to becoming pregnant again.

Pregnancy is emotional enough without adding achalasia worries to the

mix...and if you had already had your surgery, seems to me you'd be much

better off. (She was having 2 surgeries, we were having to sell her

house suddenly, we had a huge garage sale, she was in two separate

skilled nursing facilites, and then we finally moved her into a nice

apartment in a retirement facility when she got better.

In my mind, I saw surgery as the inevitable fix. I didn't want to go

through all the postponing temporary fixes if I could just get it over

with. But that is just " ME " . Everybody's different and we all have

different reasons for our decisions.

In the end, an excellent surgeon will tell you what your risks are and

what the expected outcome is for your particular set of problems. We

ARE all different, despite the same kinds of symptoms...If you

ultimately decide to go ahead with the surgery, do your homework and

pick the BEST you can for your surgeon....whether you have to drive,

fly, stay in a hotel, whatever, this is your future you're looking at.

Nothing is more important to you than that. If you have the best and

your surgery goes as well as mine did, you will only be out of pocket

the brief times I mentioned above! Best of luck to you, and welcome to

the family!

[Guest guest]

read back a few for my advice about finding surgeons...I posted recently

about this. I was lucky and went to a top gastroenterologist for

starters and she referred me to a top notch surgeon. Start at the big

medical centers. JC has written about this a lot too, and she has had

MUCH more experience with this than I have. I got lucky on my first

try. I really didn't have a referral from anyone...just a hunch...call

the MAJOR medical school, ask to be seen by the TOP SWALLOWING disorders

person, and it went from there. Even if all your tests are done, you

could still go to the TOP med school gastroenterologist with your tests

and go from there. After all, the gastros are the people who see us

first and see the most of us as they can even do the ballons and botox

stuff. So surgeons only see those of us who go on to them. Cornell is

in NY, right? I'm not sure what's in boston, but I am sure there's an

excellent one there. You could even ask to speak by phone to the

gastro's nurse to find out how many achalasians she/he treats? GOod

luck.

[Guest guest]

Hi ,

I don't know too much about the Boston VA Hospital, but I do know that the

Portland (Oregon) VA Hospital combined with Oregon Health & Science University

has a wonderful Upper G.I. Staff, with Dr.s that actually specialize in motility

and rare disorders such as Achalasia/Dysphagia. Walter Army Medical Center

in Washington D.C. also has a good reputation of G.I. Doctors as well.

Hopefully that will help a little.

--

>>> THE4FAGANS@... 12/20/01 10:17AM >>>

Thanks, !

I truly appreciate your input! I have a scheduled follow up with my gastro on

Jan. 7th....I will definitely find out more about the surgery. You are right, I

do need to take care of this one now and take care of myself first. Often ,

hard to do but certainly a priority!

Do you ( or anyone else out there) have suggestions on how to go about finding

the best surgeon? I certainly would be willing to travel...anyone in Boston? I

am from Mass. and know they have great hospitals and I have family there that

could help me. VA just doesn't seem to be that " up " on achalasia. ( who is? ha

ha)

I haven't tried the arginine but certainly would love to find out more. I have

been reading everyone's thoughts/benefits and am willing to try it!

Thanks again...nice to have someone who has been there/done that to " talk " to!

And thanks for the warm welcome!

[Guest guest]

Kathy, welcome. When I saw your name, I flipped out because I have

a cousin named Kathy who lives here in Calif! I keep

waiting an waiting for another person in my family to develop some autoimmune

diseases…not wishing but knowing they are bound to crop up sooner or

later….anyway, welcome~!

Debby

[ ] I am new

too!

Hi,

I was just diagnosed with AIH in the last week and

am

feeling very overwhelmed. It is great to

know that

there are others who know how I feel. I will

keep my

eyes to the screen. How long does this

feeling of

being in overdrive last with the prednisone.

Do you

get used to it????

Kathy

______________________________________________________________________

Post your free ad now! http://personals..ca

[Guest guest]

Thanks for the welcome, Debby. Isn't it strange the

way some folks meet!

Kathy

>

>

> [ ] I am new too!

>

>

>

> Hi,

> I was just diagnosed with AIH in the last week and

> am

> feeling very overwhelmed. It is great to know that

> there are others who know how I feel. I will keep

> my

> eyes to the screen. How long does this feeling of

> being in overdrive last with the prednisone. Do you

> get used to it????

> Kathy

>

>

______________________________________________________________________

>

> Post your free ad now! http://personals..ca

>

>

>

[Guest guest]

Hi Kathy,

It was so strange to get two new members with the name of Kathy. One

of 11 years with AIH and the other a new one at this.

Welcome to both of you to this wonderful group. They are a very

comforting group to be with..makes you not feel so alone in the

diagnosis.

I know when they started me on prednisone November 2002 - I was in

overdrive as you put it for as long as the dose was high. As the dose

of the prednisone was tapered down so was the overdrive. It was well

worth it to get the liver enzymes down to where they were supposed to

be. I am still on 10 mgs a day. 5mg in the am and 5mg in the evening.

It seems each doctor has a different dosing for each patient so I am

doing great on mine. I feel good most of the time but you will have

up days and down days but the main thing to remember is to rest when

you are feeling yucky and pace yourself the rest of the time. Do what

your doctor instructs you to do and know that there will be a time

that you won't feel so rushed all the time. The side affects seem

small in knowing that you will be around for a long time because of

the prednisone. I am on 50mgs of Imuran also. It was started about

the time that they started decreasing the prednisone.

Keep your chin up and hang in there and find a buddy here and talk

away- it seems it gives me a motor mouth so I take it out on the

computor and emailing. I have met some wonderful people here and they

have been a big help to me. Smiling with them and at times crying

with them. You can also become a poster here instead of a lurker

which I am mostly. Everytime that I have posted the group has come

back with lots of answers and lots of information. They are a really

great support group. If you need to just rant and rave - you can

always holler my way.

Hope you do well and again welcome to the group.

Sandy in Texas (since there is another Sandy in the group I was

include the state that I am from- helps to distinguish who is

posting lol)

just diagnosed with AIH in the last week and am

> feeling very overwhelmed. > Kathy

>

>

[Guest guest]

Kerri Ann, I'm new and vegan too! I'm just lurking because I'm trying

hard to figure out my diet. I eat really well so cutting out sugars

and yeast isn't that hard since I don't eat much of them anyway, but I

want to feel better too. I do rely on grains, so I'm taking it one

meal at a time.

-Xanthia

On Wed, Sep 17, 2008 at 2:06 PM, momkerriann <kerriann777@...> wrote:

> I am new to this group as well and I really appreciated Terry's advice

> to the newcomer. I am overwhelmed by the anti-candida diet because I

> am a vegan, therefore my only protein choices are beans and tofu.

> However, I really believe that limiting my fruit and eliminating

> grains and sugar will help immensely.

> Thank you,

> Kerri Ann

>

>