Thank You

[Guest guest]

You know, I am not sure we will be able to handle Ann after

she gets her surgery and feels great. She is so positive, friendly,

humor and loving now, she will really make the rest of us feel

like grouches after her surgery.

Just kidding Ann, you know we all love you and will be right

there in that operating room with you!

Hugs

Maggie

[Guest guest]

I am sure you will survive (lol).

For anyone who doen't already know, is very very special to me. He is the first person I ever met in my life with Achalasia after I had spent so many years feeling so alone with this. He gave me back a big part of myself and I will never forget what he has done for me. I wish you could all meet him. He is a great Guy and far more intelligent than his spelling suggests, heehee.>> > Oh now I cannot go on. Ann you need to get those pics taken for us. What > will I do if I cannot see the before and after pics. I will be thinking of > you when you go in for surgery.> > > in Suffolk> > > In a message dated 5/26/2006 3:25:55 PM GMT Standard Time, > lilac_blossom_lady@... writes:> > And to a, who has just added her message. Unfortunately my belly > before the surgerydoesn't not look as good as yours after it, so I won't be > posting a photo. Don't be disappointed Guys, just be thankful. (lol) > I feel truly blessed to know all these lovely kind people and because of it, > I feel totally confident and calm. And you have done this for me. What a > gift !!! > > >

[Guest guest]

Blimey Maggie,

It's gonna' get a little bit crowded !! Thanks for your lovely cheery post. You have always been so sweet in your replies, you make me feel like I am your little sister. xxxxxxx>> You know, I am not sure we will be able to handle Ann after> she gets her surgery and feels great. She is so positive, friendly,> humor and loving now, she will really make the rest of us feel> like grouches after her surgery. > > Just kidding Ann, you know we all love you and will be right> there in that operating room with you!> > Hugs> Maggie>

[Guest guest]

Pippi

Of course you can stay in touch!!! Glad it isn’t A

after all. Good luck though with your endeavors!!!!!

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of Pippa

Sent: Wednesday, August 30, 2006 8:52 AM

achalasia

Subject: Thank You

I must say a great big thanks to you for

setting up the website with

if I hadn't found it I would not have found out so much

information and made so many friends who have given me so much support

through my ordeal.

Even though it now seams that the consultant was wrong and that I

don't have A I would like to stay in contact with the group and all

the friends that I have found over this difficult time.

Take care

Pippa

[Guest guest]

That is great Pippa. I am glad you found comfort in our group. I hope that you get back to good health very soon. in GeorgiaPippa <kevin.brown150@...> wrote: I must say a great big thanks to you for setting up the website with if I hadn't found it I would not have found out so much information and made so many friends who have given me so much support through my ordeal.Even though it now seams that the consultant was wrong and that I

don't have A I would like to stay in contact with the group and all the friends that I have found over this difficult time.Take carePippa<FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Welcome Home , I am really pleased that it all went well for you. Now please take it easy with the eating. You will find that you are rewarded by your patience. Best Wishes from Ann xx Leekley <melj916@...> wrote: Hello everyone. I just got home from the hospital from having my surgery and wanted to let you know that it went well. The

doctors also found I had a hernia and fixed that as well. I am already feeling worlds better and can't wait eat normally again. Thank you all so much for your prayers and support. Thank you, Need a quick answer? Get one in minutes from people who know. Ask your question on Answers.

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[Guest guest]

, that is great. Take your time recovering so your body can adjust to eating more normal again. in Georgia. Leekley <melj916@...> wrote: Hello everyone. I just got home from the hospital from having my surgery and wanted to let you know that it went well. The doctors also found I had a hernia and fixed that as well. I am already feeling worlds better and can't wait eat normally again. Thank you all so

much for your prayers and support. Thank you, Need a quick answer? Get one in minutes from people who know. Ask your question on Answers. <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Glad you are already feeling better and you will eat normally again

soon.Take care and get some extra rest.

Tonia

>

> Hello everyone. I just got home from the hospital from having my

surgery and wanted to let you know that it went well. The doctors

also found I had a hernia and fixed that as well. I am already

feeling worlds better and can't wait eat normally again. Thank you

all so much for your prayers and support.

>

> Thank you,

>

>

>

> ---------------------------------

> Need a quick answer? Get one in minutes from people who know. Ask

your question on Answers.

>

[Guest guest]

,

You're very welcome! How long have you been a patient of Dr.

Wille's? My husband, , has been his patient for just over 4

years. I see him for acid reflux (the last 2 years), too. He is not

afraid to refer someone out, if he feels he can't handle their case

and we like that about him. I had wondered if he had any achalasia

patients and that answers my question. He's doing an EGD (scope) with

biopsies for on Tuesday at the Unisouce Office. Is that where

you see him? Dr. Wille wouldn't be the one to do surgery, a surgeon

would. Has he a recommended a surgeon out of Beaumont for you? I've

heard of a good thoracic surgeon from there, but he still doesn't have

the experience that Dr. Rice has, I'm sure.

When it comes to insurance, maybe you can start by checking their

website, booklets they've given you, or calling the phone number on

the card. Is it a PPO? Our PPO (it was MCare on our last visit to

Cleveland) covered the Cleveland fees as in-network. I'm hoping

you'll get lucky that way.

Before you go to Cleveland, you'll also want to request your

records (including films) from U of M and Dr. Wille. Make sure you

tell them that you tell them when your appointment is (after you make

one). It seemed to take a long time for U of M to send 's

records over to Cleveland. One of the test results they got the same

day as our visit, and the rest never made it. You also may want to

call them after you send the request form to make sure they are

working on things (we didn't do that and maybe things would've worked

out better if we had).

I wish you lots of luck! Please keep us posted on what's

happening for you!

in SE Michigan

>

> Thank you everyone. I have seen all of those doctors that you have

> mentioned. Dr. W. told me to try Ohio but I had no idea that they were

> so experienced. I have an appointment with doctor Willie on the 22nd.

> But, if he hasn't done this surgery before then I would like to try Dr.

> Rice. The only propblem is, my insurance is not so good. U of M does

> not accept it. United Health Care?

>

>

>

[Guest guest]

Hello

In reference to your comment:

The only propblem is, my insurance is not so good. U of M does not accept it. United Health Care?

Welcome to the group. Someone else may have responded to this, I am

a bit behind on reading mails.

I have run into this a lot. I am retired and had indemnity insurance

with the company I retired with. They sold out to another company

after I retired but with they are suppose to keep my insurance the

same. They are insurance with United Heath care, therefore UHC

handled my insurance also. So often, I am told they cannot accept

my insurance etc....I have to insist they call and verify. I think

Insurance companies pay less on hospital claims than we would

pay and what UHC wants to pay, some hospitals well not accept.

This may be the problem with your insurance.

Not sure this helps you a lot, but thought I'd throw that in.

Good luck to you, and I hope you can find a way to get it

paid for and can see Dr. Rice. If not you might call some

of the other doctors who have been recommend on this site

and see if their hospitals will. If you need those names I

am sure the members will be glad to provide you with that

Info.

Maggie

Alabama

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

I recall how considerate you were to the rest of the people in our group, a year ago today, when you had your daughter come online and post a message as to how you were doing.

While the wait to have your surgery seemed to go on forever, your life was given back to you "today." You stayed here as an even more important member of our group. So many people you have helped with your words of advice and especially compassion, I want to thank you for everything you have done for people who came in here as complete strangers and left as family. In the face of a dark disease you were always able to bring in the sunshine. You truly have been an inspiration to us all. It is us who should be thanking you.

Love,

In a message dated 5/30/2007 6:25:49 A.M. Eastern Daylight Time, lilac_blossom_lady@... writes:

Today is exactly one year since I had my myotomy.

It feels like a good time to let everyone here know how much your support and understanding has meant to me. I would not have wanted to go through that time without you all.

I do not know what the future will hold. None of us do. But I have to believe that things will carry on being good. I feel that this is the only way to live.

It is important to me that you know how grateful I am and how much your friendship has meant to me.

With lots of love and thankfulness from Ann XXXXXXXX

The all-new goes wherever you go - free your email address from your Internet provider.

See what's free at AOL.com.

[Guest guest]

Hi Ann, Congratulations on your first "myotomy-birthday". Lets hope many many of these birthdays may follow, being as happy and healthy as this one! I think you should treat yourself having your favorite dinner tonight, don't you? You yourself are such a very supportive and understanding person, I know many of us (amongst whom myself) are very thankfull to you as well! Love, Isabella Ann Higgs <lilac_blossom_lady@...> wrote: Today is exactly one year since I had my myotomy. It feels like a good time to let everyone here know how much your support and understanding has meant to me. I would not have wanted to go through that time without you all. I do not know what the future will hold. None of us do. But I have to believe that things will carry on being good. I feel that this is the only way to live. It is important to me that you know how grateful I am and how much your friendship has meant to me. With lots of love and thankfulness from Ann XXXXXXXX The all-new goes wherever you go - free your email address from your Internet provider.

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

[Guest guest]

That is great. Your first year under your belt and doing well at that. I am very glad to have helped you along the way. I feel very lucky to have meet you. Keep the spirts high and your stress low. Smiling more each day....Ann Higgs <lilac_blossom_lady@...> wrote: Today is exactly one year since I had my myotomy. It feels like a good time to let everyone here

know how much your support and understanding has meant to me. I would not have wanted to go through that time without you all. I do not know what the future will hold. None of us do. But I have to believe that things will carry on being good. I feel that this is the only way to live. It is important to me that you know how grateful I am and how much your friendship has meant to me. With lots of love and thankfulness from Ann XXXXXXXX The all-new goes wherever you go - free your email address from your Internet provider. <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

8:00? 8:25? 8:40? Find a flick in no time with the Search movie showtime shortcut.

[Guest guest]

Ann, congratulations on your year anniversary. I can't

add anything to what has already said and I'll

bet there is not one on this board that does not feel the

same way about you.

I hope that you will continue to have a successful

surgery year, after year, after year.

We're all glad that you continue to post. We'd miss

you very much if you left us.

Hugs,

MaggieSee what's free at AOL.com.

[Guest guest]

Ann

Congrats on one year!!! I am five days away from my myotomy. Have come down with a cold so am praying that it leaves in 4 days!!!! I don't want to have to wait any longer.

Hope mine turns out like yours!

Tammy

Thank You

Today is exactly one year since I had my myotomy.

It feels like a good time to let everyone here know how much your support and understanding has meant to me. I would not have wanted to go through that time without you all.

I do not know what the future will hold. None of us do. But I have to believe that things will carry on being good. I feel that this is the only way to live.

It is important to me that you know how grateful I am and how much your friendship has meant to me.

With lots of love and thankfulness from Ann XXXXXXXX

The all-new goes wherever you go - free your email address from your Internet provider.

Ready for the edge of your seat? Check out tonight's top picks on TV.

[Guest guest]

Congratulations, Ann, on your Anniversary! And it's so good to have you as a member of this worthy group! all best, Deborah

[Guest guest]

G'day Ann!

Happy birthday to your one-year-old renovated oesophagus! May the two of you

have many

many enjoyable years together!

You were such a support and inspiration for me when I was deciding what to do.

Thank YOU!

Greetings across the miles!

Anita in Germany

[Guest guest]

ann

congratulations on your year, its great to hear that things are going well

for you and, like you say, we can only hope that it continues. thank you

for your continued support, its great to know there are people there to turn

to.

its now 3 weeks today since my op, i've got a bit of infection in my scar

but have got antibiotics to help to clear that up. i'm feeling quite slow

and sticking to a very soft diet and feeling really nervous about trying

anything more solid - i'm just trying not to think about that for now

anyway!!!!

hope you're well and see you soon. xxx

_________________________________________________________________

Could you be the guest MSN Movies presenter? Click Here to Audition

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[Guest guest]

as we all are proud of you too, MIke!!!

**************Gas prices getting you down? Search AOL Autos for

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[Guest guest]

THANK YOU, SHIRLEY!

YOU MADE OUR DAY!

Your moderators, Ellen, Marie and Laurie

Ellen Garber Bronfeld

egskb@...

Thank you

Hi all, Just have to share this. Our PAS PACT agent called us last

year and explained how important it was to finish our PAS screening

by a certain date, fill out the PUNS, get a physical, have Chris

tested etc. We had problems before trying to do this. Our PACT

agents kept changing, they lost our paperwork, etc. So we finally

did all this. We filed for Home Based services. Many good things

came out of this. But mostly it was because of the help of this

website and those people with first hand knowledge. already

had Medicare A and B as well as my medical, dental and prescription.

We were able to get on Medicaid but the spend down was over

$400.00 a month, which thank God is a pretty healthy 27 year

old DS young man so that was too high, he will not reach that unless

he gets really ill. So then with the help of (you know who you

are), we changed to HBWD with a buy in of $63.00 a month. Then

they put him on Medicare part D which is great if he ever needs

meds. We found a wonder lawyer to help us with our Wills, Trusts,

etc. ( Rubin) And we have an appointment with the Adult DS

clinic for Sept. So now we wait.........

The funniest thing I have to share is that with all this medical

coverage has, nobody would cover a routine physical, a tetanus

shot or urine test (we needed to finish our screening). We are still

trying to get this resolved but it was before HBWD. Nothing is

perfect but it seems that good things do happen out of not so good

things sometimes.

A big thank you goes to ALL of you. Keep posting your good and bad

news, your laughs and your cries and keep helping those who need your

help (like me). Thank you starting this message board and thank you

all for sharing.

Shirley

[Guest guest]

Hello all, and thank you again for your support. If you recall I originally

wrote to gain information about what happens after the puns and the Family

Support Network website has been great. You are all correct when you say this

is " as clear as mud " . Our experience has been totally different in the fact

that while we have been " allowed to get on the PUNS list " , we have not been

allowed by our PAS agency to do a PAS screening until we get notification that

we have funding. So here we sit, we have a medicaid card (and Annie has our

insurance), we are on the PUNS list and are scheduled to do a PUNS update this

July. Although I had a physical done on Annie, we can not move ahead in any

other area until we get notification that she will get the funding. Our PAS

agency said that things have changed so drastically that they have families in

different stages. In the meantime I sit here wondering if other families are

following this same chain of events. I feel like we are on the " w

rong page " and that I will find out we missed a step or somehow got on the wrong

list.

I have to say, everytime I read an email or an update I gain a little more

understanding of this process. I do wish however (since I am a visual learner!)

that I could stare at some checklist and " know " that I have not missed anything.

Thank you for giving families this listserv as a way of sharing their

experiences, teaching, supporting and helping families. This is such important

work and I can't say thank you enough!

Joanne

--------- Thank you

Hi all, Just have to share this. Our PAS PACT agent called us last

year and explained how important it was to finish our PAS screening

by a certain date, fill out the PUNS, get a physical, have Chris

tested etc. We had problems before trying to do this. Our PACT

agents kept changing, they lost our paperwork, etc. So we finally

did all this. We filed for Home Based services. Many good things

came out of this. But mostly it was because of the help of this

website and those people with first hand knowledge. already

had Medicare A and B as well as my medical, dental and prescription.

We were able to get on Medicaid but the spend down was over

$400.00 a month, which thank God is a pretty healthy 27 year

old DS young man so that was too high, he will not reach that unless

he gets really ill. So then with the help of (you know who you

are), we changed to HBWD with a buy in of $63.00 a month. Then

they put him on Medicare part D which is great if he ever needs

meds. We found a wonder lawyer to help us with our Wills, Trusts,

etc. ( Rubin) And we have an appointment with the Adult DS

clinic for Sept. So now we wait.........

The funniest thing I have to share is that with all this medical

coverage has, nobody would cover a routine physical, a tetanus

shot or urine test (we needed to finish our screening). We are still

trying to get this resolved but it was before HBWD. Nothing is

perfect but it seems that good things do happen out of not so good

things sometimes.

A big thank you goes to ALL of you. Keep posting your good and bad

news, your laughs and your cries and keep helping those who need your

help (like me). Thank you starting this message board and thank you

all for sharing.

Shirley

[Guest guest]

So glad it has been helpful...I like the idea of a checklist.

That may be something that Charlotte would do and put on the Family Support

Network website...

Ellen

Ellen Garber Bronfeld

egskb@...

Thank you

Hi all, Just have to share this. Our PAS PACT agent called us last

year and explained how important it was to finish our PAS screening

by a certain date, fill out the PUNS, get a physical, have Chris

tested etc. We had problems before trying to do this. Our PACT

agents kept changing, they lost our paperwork, etc. So we finally

did all this. We filed for Home Based services. Many good things

came out of this. But mostly it was because of the help of this

website and those people with first hand knowledge. already

had Medicare A and B as well as my medical, dental and prescription.

We were able to get on Medicaid but the spend down was over

$400.00 a month, which thank God is a pretty healthy 27 year

old DS young man so that was too high, he will not reach that unless

he gets really ill. So then with the help of (you know who you

are), we changed to HBWD with a buy in of $63.00 a month. Then

they put him on Medicare part D which is great if he ever needs

meds. We found a wonder lawyer to help us with our Wills, Trusts,

etc. ( Rubin) And we have an appointment with the Adult DS

clinic for Sept. So now we wait.........

The funniest thing I have to share is that with all this medical

coverage has, nobody would cover a routine physical, a tetanus

shot or urine test (we needed to finish our screening). We are still

trying to get this resolved but it was before HBWD. Nothing is

perfect but it seems that good things do happen out of not so good

things sometimes.

A big thank you goes to ALL of you. Keep posting your good and bad

news, your laughs and your cries and keep helping those who need your

help (like me). Thank you starting this message board and thank you

all for sharing.

Shirley

[Guest guest]

HEY MIKE!!

HOPE YOU ARE DOING WELL!!

YOUR QUESTIONS SPARK CONVERSATIONS FROM US ALL...WHICH IS EXACTLY WHAT A

GROUP IS...YOU HAVE MADE THIS GROUP A GREAT SUCCESS!!! THANK YOU, MIKE!!! WE

SHOULD BE THANKING YOU....BUT YOU ARE SO HUMBLE TO THANK US!! YOU ARE A GREAT

GUY!!!

HAVE AN AWESOME DAY!

GENTLE HUGS TO ALL,

KATHY G.

**************Get the scoop on last night's hottest shows and the live music

scene in your area - Check out TourTracker.com!

(http://www.tourtracker.com?NCID=aolmus00050000000112)

[Guest guest]

I think it is great that you ask us all, you are making us all feel we matter

and that we have an opining on what goes on. And you are letting us know that

you really care. Thanks for asking and keep on asking.

Keep on Smiling

Kathy Sweet

Thank you

Group when I ask you questions? It normal for me to ask so the whole

group get's idea...... so thank you for taking time out to answer

Mike Group owner

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[Guest guest]

HEY SUE!!!

THAT IS GREAT THAT YOU HAVE SUCH THOROUGH DOCTORS!!! MOST FOLKS JUST ASSUME

THAT IF WE HAVE ELEVATED CHOLESTEROL OR TRIGLYSTERIDES, IT HAS TO BE OUR

DIET....THIS IS NOT ALWAYS THE CASE.

WHEN I USED TO TEACH VENIPUNCTURE AND HOW TO SPIN DOWN THE TUBES OF BLOOD IN

THE LAB PRIOR TO SENDING THEM OUT TO BE TESTED....I MADE SUCH A FUSS OVER

MAKING SURE THAT THE KIDS FOLLOWED THE STEPS TO THE " T " ..IF YOU DO NOT FOLLOW

THE TUBES TO BE DRAWN IN THE PROPER ORDER...BELEIVE IT OR NOT, IT CAN AFFECT

THE RESULTS OF TESTS, IF YOU SHAKE THE TUBE AFTER THE BLOOD IS DRAWN INTO IT,

YOU CAN RUPTURE THE BLOOD CELLS WHICH WILL ALTER THE RESULTS OF THE TESTS,

ONLY GENTLE INVERSION IS REQUIRED, IF YOU DON'T WAIT THE 15 MINTUES PRIOR TO

SPINNING THE BLOOD DOWN, IT WILL ALTER THE AFECTS, .IF YOU WAIT TOO LONG AND

DON'T CENTRIFUGE (SPIN) DOWN THE BLOOD TO SEPERATE THE SERUM (THE PART THAT IS

TESTED) IT CAN CERTAINLY AFFECT THE RESULTS.. IF YOU LEAVE THE TOURNIQUET ON

TOO LONG...ONCE AGAIN YOU CAN ALTER THE TESTS....SO YOU SEE THERE ARE ALOT OF

REASONS THAT THE TESTS COULD BE HIGH AND NOT TRUE!!! IF THE PERSON ATE AND

THE DR'S OFFICE DIDN'T TELL THEM TO FAST...FOR THIS TEST IS ANOTHER BIGGIE.

I AM SO GLAD THAT YOUR DR DID A RE-DRAW TO MAKE SURE!!!

ALSO, ANOTHER REAL PROBLEM IS FAMILY HISTORY....I HAVE SEEN SO MANY PATIENTS

WHO REALLY, TRULY FOLLOW A WELL-BALANCED, LOW CARB DIET....AND ARE NICE AND

ACTIVE AND THIN....BUT HAVE HIGH BLOOD PRESSURE, HIGH CHOLESTEROL AND HIGH

TRIGLYCERIDES.....SADLY, NOTHING BUT MEDS CAN HELP THEM.

SO THRILLED ABOUT YOUR OTHER DR TOO, SUE...YOU DON'T WANT TO TAKE ANY MEDS

THAT YOU DON'T NEED TO!! I HAVE THYROID DISEASE ALSO. MY DOC CHECKED X3

BLOOKD TESTS PRIOR TO MEDS....WHICH WAS A REAL FREAKING NIGHTMARE DUE TO MY

VEINS...NO EXAGERATION...AT LEAST 9-12 STICKS PER TEST SINCE MY VEINS ARE SO

POOR.

NOW...BACK TO YOU...SUE...SURE, I AM THRILLED THAT YOU ARE ONE OF OUR NEW

MODERATORS!!! WHEN MIKE AND I TALKED ABOUT IT, I WAS JUST THRILLED!!

THANKS FOR YOU WELL WISHES....THE PAIN AND SPASMS GOT TO BE TOO

MUCH....KEPT ON PASSING OUT FROM PAIN. BETTER NOW...KEEP YOUR FINGERS CROSSED!

THANKS FOR LETTING US ALL KNOW ABOUT YOUR NEW ADDRESS..PLEASE EVERYONE

FOLLOW SUE'S GREAT COMMUNICATION SKILLS...IF YOU CHANGE YOUR ADDRESS, PLEASE LET

US KNOW.

LOTS OF LOVE TO YOU , SUE.

GENTLE HUGS TO ALL,

KATHY G.

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