Re: Please Send Kleenex-Visit with Dr. Shay left broken

[Guest guest]

Hi Sharon, This is unbelievable... don't they look at the test results that diagnosed achalasia at all? And where is Dr. Rice in all of this? At this moment I would go and put the whole world upside down to get in direct touch with Dr. Rice. If that wouldn't work, I'ld just go somewhere else. There are other well-known hospitals experienced with achalasia in the US mentioned here on the board. I wouldn't put up with this crap any longer. Chin up, things change for the better, but only if you hang in there and go on!!! Love, IsabellaSharon West <iipistacio1117@...> wrote: As many of you today was my visit with Dr. Shay. I know that someone in this group said that he was nice and seemed to listen. He walked into the room and greeted my hubby and I with a nice hand shake and from there it went straight to hell. He sat down and said I have seen your pictures and charts as they were presented to the swallow study conference by our had and chief Dr. Falk. I really have no idea why you are here today as I am in complete agreement with Dr. Falk. I explained that I had many questions and concerns and wonder what to do about the ulcer and the fungus. He said you need to lose weight and join a weight reduction program, His wife uses Craig. I ask how I was to do this without being able

to eat much. He told me I must be getting something down as I am the same weight I was on prior visit. I told him I am unable to eat any fruits or vegetables at all and only very limited small bites and I usually end up using my bucket. He told me he would leave for a few minutes while I got myself settled and wrote down what I was eating lately. When he returned he grab the list which contained my list of mashed potatoes, cream soup, lemon ice, ice cream, small amounts of fish, or shrimp, or scallops, some type of seafood, chicken, pork. applesauce and oatmeal or cream of wheat, rice, pasta or noodles scrambled eggs. These or the things i have tried and it depends on the day of the week if I can get them down or not. He looked over the list and said there the problem right there you eat to much, and you eat terrible foods. You should have no fruit no vegetables, no oatmeal, n o

cream of wheat, and no absolutely no applesauce. Basically he suggested bullion and yogurt, and mashed potatoes. Drink plenty of water which I can't even swallow. I began to cry and he said on dear I will give you a few minutes to get yourself together. When he returned he told me as upset and frustrated as I appeared he suggested therapy. So this fat piggy crawled home to shut the door and lock out the world and wipe my snotty nose. I explained I had went from 248 pounds down to 155 and he said well keep going and start exercising. I told him I walked and was limited do to my heart condition and my arthritic. He suggested that I give up all my arthritis meds and all aspirin of any type and drink lots of salty bullion. I thank all of you for listen and trying to help. I realize there is something really wrong with me I just don't seem to be able to

buck up. Sharon the piggy in Ohio

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[Guest guest]

Hi Sharon, You poor girl. I know exactly how you feel. It's a real bummer when the doctors think you are nutritionally OK because you are overweight. From reading your list of foods you eat -it sounded just like my diet. Lots of dairy and creamy soups - things that go down easily. These are also the things that keep weight on unfortunately. I had to lose 20 kgs before my surgeon would remove my oesophagus. This is from a woman who could hardly eat a thing. He was very understanidng about why i kept weight on - the high calorie diet and i think you will find others on the board who have been in the same position. I had to see a dietitian to help me lose weight and she told me about a very obese woman she came across in her training days, who ended up dying of malnutrition because she was put on such a harsh diet. Because she was fat the doctors thought she could manage to lose

the weight. But it was fatal. Anyhow, i was put on a diet drink called Optifast- made by a company called Novartis. Their web site is www.novartisnutrition.com or try www.optifast.com.au . This stuff was really good - i was on it three meals a day because i could only get down fluids anyway. The good thing about it is that it has all the trace elements in it that your body needs. While i was on it i felt the best i had for years because i was nutritionally balanced for the first time in years. And the weight dropped off me. I lost 20 kgs in 5 months. So, it sounds as though you have to do a few things - 1. Find a good dietitian and get on some sort of liquid drink that will get you nutritionally balanced for a start. 2. then find a

more understanding doctor if you can. Someone on the board will be able to help you i'm sure. 3. Once you are feeling better/stronger start exercising - it will make you stronger for any operation or treatment you have to have. Hope all goes well. Deb from Melbourne, Australia.Sharon West <iipistacio1117@...> wrote: As many of you today was my visit with Dr. Shay. I know that someone in this group said that he was nice and seemed to listen. He walked

into the room and greeted my hubby and I with a nice hand shake and from there it went straight to hell. He sat down and said I have seen your pictures and charts as they were presented to the swallow study conference by our had and chief Dr. Falk. I really have no idea why you are here today as I am in complete agreement with Dr. Falk. I explained that I had many questions and concerns and wonder what to do about the ulcer and the fungus. He said you need to lose weight and join a weight reduction program, His wife uses Craig. I ask how I was to do this without being able to eat much. He told me I must be getting something down as I am the same weight I was on prior visit. I told him I am unable to eat any fruits or vegetables at all and only very limited small bites and I usually end up using my bucket. He told me he would leave for a few minutes while I got

myself settled and wrote down what I was eating lately. When he returned he grab the list which contained my list of mashed potatoes, cream soup, lemon ice, ice cream, small amounts of fish, or shrimp, or scallops, some type of seafood, chicken, pork. applesauce and oatmeal or cream of wheat, rice, pasta or noodles scrambled eggs. These or the things i have tried and it depends on the day of the week if I can get them down or not. He looked over the list and said there the problem right there you eat to much, and you eat terrible foods. You should have no fruit no vegetables, no oatmeal, n o cream of wheat, and no absolutely no applesauce. Basically he suggested bullion and yogurt, and mashed potatoes. Drink plenty of water which I can't even swallow. I began to cry and he said on dear I will give you a few minutes to get yourself together. When he returned he told me as upset and frustrated as I

appeared he suggested therapy. So this fat piggy crawled home to shut the door and lock out the world and wipe my snotty nose. I explained I had went from 248 pounds down to 155 and he said well keep going and start exercising. I told him I walked and was limited do to my heart condition and my arthritic. He suggested that I give up all my arthritis meds and all aspirin of any type and drink lots of salty bullion. I thank all of you for listen and trying to help. I realize there is something really wrong with me I just don't seem to be able to buck up. Sharon the piggy in Ohio

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[Guest guest]

Sharon,

I'm so sorry to hear how your appointment went! I was the one who

said Dr. Shay seemed nice. For us, he took a lot more time to listen

to my husband describe his symptoms than Dr. Achkar (also at

Cleveland) did.

I'm so surprised that they haven't addressed the fungal infection

or ulcer issues (and how to treat them)! Also, if they feel you are

eating the wrong things, why aren't they recommending a dietician

(like Debbie mentioned)? Maybe you should see if one of your other

physicians (internist or other) can recommend a dietician. Hopefully,

this person can take into account that not much even goes down!

Did Dr. Shay (or Dr. Falk) say how much weight they want you to

lose and what they would do when you lose it? Hopefully, they offered

some plan of action for afterwards. Maybe, after you contact a

dietician, you can ask these questions of Dr. Falk or Dr. Rice, if

they haven't been answered. At least they will see that you're trying

to comply with what they want.

Good luck and hang in there! We're on your side here!

in Michigan

>

> As many of you today was my visit with Dr. Shay. I know that

someone in this group said that he was nice and seemed to listen. He

walked into the room and greeted my hubby and I with a nice hand shake

and from there it went straight to hell. He sat down and said I have

seen your pictures and charts as they were presented to the swallow

study conference by our had and chief Dr. Falk. I really have no idea

why you are here today as I am in complete agreement with Dr. Falk.

>

> I explained that I had many questions and concerns and wonder what

to do about the ulcer and the fungus. He said you need to lose weight

and join a weight reduction program, His wife uses Craig. I

ask how I was to do this without being able to eat much. He told me I

must be getting something down as I am the same weight I was on prior

visit. I told him I am unable to eat any fruits or vegetables at all

and only very limited small bites and I usually end up using my bucket.

>

> He told me he would leave for a few minutes while I got myself

settled and wrote down what I was eating lately. When he returned he

grab the list which contained my list of mashed potatoes, cream soup,

lemon ice, ice cream, small amounts of fish, or shrimp, or scallops,

some type of seafood, chicken, pork. applesauce and oatmeal or cream

of wheat, rice, pasta or noodles scrambled eggs. These or the things

i have tried and it depends on the day of the week if I can get them

down or not.

>

> He looked over the list and said there the problem right there you

eat to much, and you eat terrible foods. You should have no fruit no

vegetables, no oatmeal, n o cream of wheat, and no absolutely no

applesauce. Basically he suggested bullion and yogurt, and mashed

potatoes. Drink plenty of water which I can't even swallow. I began

to cry and he said on dear I will give you a few minutes to get

yourself together. When he returned he told me as upset and

frustrated as I appeared he suggested therapy.

>

> So this fat piggy crawled home to shut the door and lock out the

world and wipe my snotty nose. I explained I had went from 248 pounds

down to 155 and he said well keep going and start exercising. I told

him I walked and was limited do to my heart condition and my

arthritic. He suggested that I give up all my arthritis meds and all

aspirin of any type and drink lots of salty bullion.

>

> I thank all of you for listen and trying to help. I realize there

is something really wrong with me I just don't seem to be able to

buck up.

>

> Sharon the piggy in Ohio

>

[Guest guest]

Hello, Sharon.

I think there is a communication problem in your case. Probably what the

doctors have done and said is correct but it wasn't communicate in a way

so that you understood it in the way needed to answered your questions.

I just reread many of your messages and here is what I think is going on.

First, about treating the achalasia. It looks like they have all agreed

that a myotomy redo is unlikely to help you and you know dilatation and

Botox do not help you so that leaves only an esophagectomy. You are not

at this time a candidate for esophagectomy though because you need good

lungs, a good heart, and good health. You have none of these and you

have an implanted cardioverter-defibrillator (ICD) in the way. Dr. Rice

has told you that he does not know if your stomach would work to make a

gastric tube for a gastric pull-up type esophagectomy. If he can't do

that he would need to use part of your intestines or colon to replace

your esophagus and that would add even more stress to a body that is

already at great risk. This probably means there is nothing they can do

for the achalasia accept to recommend that you get in better shape and

treat the ulcer. In past messages it sounded like you were suppose to

see an " Infectious Disease service " . It looks to me like they are not

telling you what specifically to do for the infection because that is

not their specialty and expect you to talk to someone that will decide

that. If you have not gotten in contacted with an " Infectious Disease

service " then this may be your next step and if you don't know were to

go that could be the next question to ask your doctors. Ulcers and

esophageal infections can cause swallowing problems. If you get these

under control you may have better swallowing. If that does not improve

swallowing, and esophagectomy is the only choice for improvement, you

would still want to get rid of the infections before that, and get into

the best shape you can to overcome the risks due to problems, such as

bad heart and lungs, that you can't fix. So, I understand them saying

loose weight, treat the infections and see cardiologist. I think one of

the things you may want to see the cardiologist about is his

recommendations about what you can do to get in top shape besides

loosing weight. Also it would be good to ask him about what you need to

know if you ever need to have a major surgery such as an esophagectomy.

notan