Re: lost for words...help!

[Guest guest]

Twenty three years ago I was in your situation. I was a nurse with severe

achalasia. Mega sigmoid esophagus feeling I was about to just die. I find that

Dr.'s who see pts with achalasia who are not ultra skinny from malnutrition they

don't believe how much you truly are suffering. (I did early on almost starve to

death.) The barium swallow changed his mind very quickly. I was no longer able

to work. I cried in his office telling him I had no insurance and no money to

pay for surgery. But I could not live much longer vomiting most everything I ate

or swallowed. I cried because I had no insurance or money but also because of

the toll it took on my life and I was tired of living suffering so much. He was

very kind. He sent me to the financial aid office and actually because I was

unable to work and had zero income I was able to get covered by medicaid and it

paid the ENTIRE bill! Being broke and poor can wind up being a blessing. Many

forms to fill out but I qualified. My surgery was prior to the lap surgeries

they are doing now. I had the full thoracotomy cutting through my ribs and

cracking them open. It was a nightmare of a recovery. I was in the hospital 3

weeks. Now it is done so much easier and with great pain control. I just want to

encourage you to go to the financial office and see if you are eligible for

government assistance. It paid over $13,000 and I did not pay a dime of it. It

also saved my life. I hope this encourages you a bit. What stopped me from

having the surgery for so long was being told it would not cure it, only help my

pain. Had I not waited so long it would never have gotten as bad. I still have

my very diseased esophagus and deal with eating difficulty every day. But

nothing like before. And I go for dialations which help when things get really

bad. I have this disease 34 years, it is a way of life. I don't intend on

loosing it either. I deal with it as I go along. I pray God blesses you and

helps you along your journey. Joann

[Guest guest]

Thanks for answering my post Joann. I have suffered with Achalasia for so long

has really been hard for me. Even the surgeon that I was referred to could not

understand how I was suffering and still be overweight. When he 1st told me to

lose weight, I asked him how can I do that and I cannot eat. What I meant was

how can I do that and I cannot eat low fat things, like salads. He just looked

at me with amazement. He had asked me to come back in 3 months to see if I lost

weight. I didn't. In those three months. I had lost my contract and my

insurance, and my new job I got did not offer insurance. I didn't think it was

important because besides the achalasia and being obese; I am healthy.

Joan, you know 1st hand how it is to be a nurse to a patient that is in better

shape than you. Achalasia affects me in very different ways. It makes me

moody, crackly and depressed, to name a few. I have good days and I have bad

days. There are days in which I bring up everything I eat. There are days in

which I just lie in my bed and do nothing. Wow, to know you were the same place

I am 23 years ago. Our stories are so much alike it is amazing. Well today I

got a job. I will start in a week. They do have insurance. I will go back to

my life of pretending that I am ok, when I am not ok.

Because just this past December, I tried to get an appointment with the surgeon

who wants me to lose the weight before I can get the surgery. I could not even

make an appointment. They wanted a referral, etc. I was so frustrated. I

tried to do what you did. I just didn't have a doctor who cares enough. I am

praying that I can either lose the weight; Or I can get a combo Heller Myotomy

and gastric bypass surgery.

Thanks for answering my post Joann. I have suffered with Achalasia for so long

has really been hard for me. Even the surgeon that I was referred to could not

understand how I was suffering and still be overweight. When he 1st told me to

lose weight, I asked him how can I do that and I cannot eat. What I meant was

how can I do that and I cannot eat low fat things, like salads. He just looked

at me with amazement. He had asked me to come back in 3 months to see if I lost

weight. I didn't. In those three months. I had lost my contract and my

insurance, and my new job I got did not offer insurance. I didn't think it was

important because besides the achalasia and being obese; I am healthy.

Joan, you know 1st hand how it is to be a nurse to a patient that is in better

shape than you. Achalasia affects me in very different ways. It makes me

moody, crackly and depressed, to name a few. I have good days and I have bad

days. There are days in which I bring up everything I eat. There are days in

which I just lie in my bed and do nothing. Wow, to know you were the same place

I am 23 years ago. Our stories are so much alike it is amazing. Well today I

got a job. I will start in a week. They do have insurance. I will go back to

my life of pretending that I am ok, when I am not ok.

Because just this past December, I tried to get an appointment with the surgeon

who wants me to lose the weight before I can get the surgery. I could not even

make an appointment. They wanted a referral, etc. I was so frustrated. I

tried to do what you did. I just didn't have a doctor who cares enough. I am

praying that I can either lose the weight; Or I can get a combo Heller Myotomy

and gastric bypass surgery.

>

>

>

> Twenty three years ago I was in your situation. I was a nurse with severe

achalasia. Mega sigmoid esophagus feeling I was about to just die. I find that

Dr.'s who see pts with achalasia who are not ultra skinny from malnutrition they

don't believe how much you truly are suffering. (I did early on almost starve to

death.) The barium swallow changed his mind very quickly. I was no longer able

to work. I cried in his office telling him I had no insurance and no money to

pay for surgery. But I could not live much longer vomiting most everything I ate

or swallowed. I cried because I had no insurance or money but also because of

the toll it took on my life and I was tired of living suffering so much. He was

very kind. He sent me to the financial aid office and actually because I was

unable to work and had zero income I was able to get covered by medicaid and it

paid the ENTIRE bill! Being broke and poor can wind up being a blessing. Many

forms to fill out but I qualified. My surgery was prior to the lap surgeries

they are doing now. I had the full thoracotomy cutting through my ribs and

cracking them open. It was a nightmare of a recovery. I was in the hospital 3

weeks. Now it is done so much easier and with great pain control. I just want to

encourage you to go to the financial office and see if you are eligible for

government assistance. It paid over $13,000 and I did not pay a dime of it. It

also saved my life. I hope this encourages you a bit. What stopped me from

having the surgery for so long was being told it would not cure it, only help my

pain. Had I not waited so long it would never have gotten as bad. I still have

my very diseased esophagus and deal with eating difficulty every day. But

nothing like before. And I go for dialations which help when things get really

bad. I have this disease 34 years, it is a way of life. I don't intend on

loosing it either. I deal with it as I go along. I pray God blesses you and

helps you along your journey. Joann

>

[Guest guest]

There is a woman in Montana who had the myotomy and weightloss surgery at the

same time, she doesn't post often, but I think I can find her address. It is

more common to be overweight with achalasia than many doctors can understand. I

had a 400 pound plus gi tell me losing weight wasn't hurting me. Jerk. I

wasn't even that overweight, especially compared to him. I had lost 14 pounds

in about 3 months. He gave me Prevacid for about 6 months. All you know that

14 pounds don't come off easily if you aren't trying for someone who has a few

extra pounds.

If we aren't treated, we don't get a feeling of being full and keep trying to

eat. Probably more calories are getting into our system, but our stomachs never

feel full.

good luck

If you can, find a new surgeon.

Sandy

> >

> >

> >

> > Twenty three years ago I was in your situation. I was a nurse with severe

achalasia. Mega sigmoid esophagus feeling I was about to just die. I find that

Dr.'s who see pts with achalasia who are not ultra skinny from malnutrition they

don't believe how much you truly are suffering. (I did early on almost starve to

death.) The barium swallow changed his mind very quickly. I was no longer able

to work. I cried in his office telling him I had no insurance and no money to

pay for surgery. But I could not live much longer vomiting most everything I ate

or swallowed. I cried because I had no insurance or money but also because of

the toll it took on my life and I was tired of living suffering so much. He was

very kind. He sent me to the financial aid office and actually because I was

unable to work and had zero income I was able to get covered by medicaid and it

paid the ENTIRE bill! Being broke and poor can wind up being a blessing. Many

forms to fill out but I qualified. My surgery was prior to the lap surgeries

they are doing now. I had the full thoracotomy cutting through my ribs and

cracking them open. It was a nightmare of a recovery. I was in the hospital 3

weeks. Now it is done so much easier and with great pain control. I just want to

encourage you to go to the financial office and see if you are eligible for

government assistance. It paid over $13,000 and I did not pay a dime of it. It

also saved my life. I hope this encourages you a bit. What stopped me from

having the surgery for so long was being told it would not cure it, only help my

pain. Had I not waited so long it would never have gotten as bad. I still have

my very diseased esophagus and deal with eating difficulty every day. But

nothing like before. And I go for dialations which help when things get really

bad. I have this disease 34 years, it is a way of life. I don't intend on

loosing it either. I deal with it as I go along. I pray God blesses you and

helps you along your journey. Joann

> >

>

[Guest guest]

Dear ,

That is the hard part. When you have a medical person like your surgeon who

tells you to lose weight. If anyone who should know how difficulty it is to

lose weight with Achalasia it should be your doctor. I am hoping that I can

lose the weight. I tried a liquid diet before and was successful. I just didn't

lose the 50 pound he wanted me to lose. I had lost 30. I had also lost my

health insurance too. I am just going to have to try it again. There are a few

cases where pt's have gotten both surgeries at the same time. What ever the

case. I just know that I have to do something. Living like this is terrible.

I will keep the group posted on my progress.

Lorna

>

>

> I too am overweight and cannot lose weight. I only lost some weight after

> they did the botox injection, then I started to shed inches like crazy, it

> slowed down and has stopped since food is starting to go down hard again. I

> didn't lose a lot of weight but I did lose at least one pant size.What these

> doctor's don't understand that we cannot diet like a regular person because

> most of the foods that they want us to eat are difficult to swallow. I hope

> that you find an understanding doctor who will think of your needs first.

>

> S

>

>

>

> -- Re: lost for words...help!

>

> Thanks for answering my post Joann. I have suffered with Achalasia for so

> long has really been hard for me. Even the surgeon that I was referred to

> could not understand how I was suffering and still be overweight. When he

> 1st told me to lose weight, I asked him how can I do that and I cannot eat.

> What I meant was how can I do that and I cannot eat low fat things, like

> salads. He just looked at me with amazement. He had asked me to come back

> in 3 months to see if I lost weight. I didn't. In those three months. I

> had lost my contract and my insurance, and my new job I got did not offer

> insurance. I didn't think it was important because besides the achalasia

> and being obese; I am healthy.

> Joan, you know 1st hand how it is to be a nurse to a patient that is in

> better shape than you. Achalasia affects me in very different ways. It

> makes me moody, crackly and depressed, to name a few. I have good days and

> I have bad days. There are days in which I bring up everything I eat.

> There are days in which I just lie in my bed and do nothing. Wow, to know

> you were the same place I am 23 years ago. Our stories are so much alike it

> is amazing. Well today I got a job. I will start in a week. They do have

> insurance. I will go back to my life of pretending that I am ok, when I am

> not ok.

> Because just this past December, I tried to get an appointment with the

> surgeon who wants me to lose the weight before I can get the surgery. I

> could not even make an appointment. They wanted a referral, etc. I was so

> frustrated. I tried to do what you did. I just didn't have a doctor who

> cares enough. I am praying that I can either lose the weight; Or I can get

> a combo Heller Myotomy and gastric bypass surgery.

> Thanks for answering my post Joann. I have suffered with Achalasia for so

> long has really been hard for me. Even the surgeon that I was referred to

> could not understand how I was suffering and still be overweight. When he

> 1st told me to lose weight, I asked him how can I do that and I cannot eat.

> What I meant was how can I do that and I cannot eat low fat things, like

> salads. He just looked at me with amazement. He had asked me to come back

> in 3 months to see if I lost weight. I didn't. In those three months. I

> had lost my contract and my insurance, and my new job I got did not offer

> insurance. I didn't think it was important because besides the achalasia

> and being obese; I am healthy.

> Joan, you know 1st hand how it is to be a nurse to a patient that is in

> better shape than you. Achalasia affects me in very different ways. It

> makes me moody, crackly and depressed, to name a few. I have good days and

> I have bad days. There are days in which I bring up everything I eat.

> There are days in which I just lie in my bed and do nothing. Wow, to know

> you were the same place I am 23 years ago. Our stories are so much alike it

> is amazing. Well today I got a job. I will start in a week. They do have

> insurance. I will go back to my life of pretending that I am ok, when I am

> not ok.

> Because just this past December, I tried to get an appointment with the

> surgeon who wants me to lose the weight before I can get the surgery. I

> could not even make an appointment. They wanted a referral, etc. I was so

> frustrated. I tried to do what you did. I just didn't have a doctor who

> cares enough. I am praying that I can either lose the weight; Or I can get

> a combo Heller Myotomy and gastric bypass surgery.

>

> ---

>

>