Re: New to Group--Scared about Costs...need advice!

March 14, 2011

Hey - I certainly understand about your financial concerns but your

health and well being are far more important. Find the best doctor you can in

your area - maybe someone here can shed some light for you. I would not go the

Botox route again - it's already apparent that your 2nd time was far less

effective than the first and that seems to be the case. Normally for someone

your age, surgery is the first recommendation but maybe if you can find an

experienced GI a dilation would help you for at least the next 6 months to a

year and then you can get the better insurance and get the surgery. No matter

what - you want to go to the best and most experienced person you can. I'm sure

there are some members here who can recommend someone for you - it may require

some traveling on your part but it will be worth it *and cheaper* in the long

run if you get it done right the first time. As far as your bills - pay them $20

a month every month and as long as you set up a plan with them and your payment

is on time - they will be happy. Do the best you can. Cutting back a little or

taking a bit of a hit financially is an option - not eating or drinking isnt!!

keep us posted - glad you found us.

~ in NC

>

> Hi Everyone,

> I'm new to this group and I'm so glad I found it. I am a 39 year old female

and live in Denver, CO.

>

> I started noticing some difficulty swallowing in Nov 2006. Got a diagnosis of

" Achalasia " in April 2008 and a Botox treatment, which is what the doc advised.

I was basically told nothing about Achalasia except that it gets worse. The

botox worked very well, so that combined with lack of understanding of truly

what the implications were and being in denial left me pretty much untreated

except that one Botox injection. I thought maybe it was going away!

>

> Well, the swallowing problems started getting bad again a little over a year

ago and the choking started in about May of 2010. It hit me with a vengence. I

lost my job the prior year and was without health insurance, so I just sort of

dealt with it. Ended up in the public hospital urgent care in June 2010 because

I couldn't get but a tiny bit of food or water down for nearly 3 days.

>

> They did another Botox injection and sent me on my way. It seemed to take for

about 2 weeks and then I was back to nighttime and day time choking, not being

able to swallow foods, etc. The doctor who did the treatment himself said that

he would NOT get surgery for it at that hospital, so that ended that deal.

Well,I found a temp position a month later and was finally offered full time

with benefits which kicked in this January.

>

> Unfortunately I had accumulated debt during the year of being unemployed (plus

before the A started I was very ill with some mysterious immune-related illness,

thought it was Lyme--put me in a major hole financially). Anyway, when I was

signing up for health insurance, I have been so backed up on bills that I felt I

could not afford to pay the monthly cost for the better-coverage health care

option--which would have prevented me from paying other monthly bills. I am

KICKING myself now over this decision. But at the time it was just so much

pressure and no one to process this with. Anyway, I'm in a situation now where I

realize that I cannot ignore this A issue any longer. I'm getting educated in

this forum and now I need to move forward with getting some expert help.

>

> My question is this: How have you all dealt with the financial burden of

having A and all of its treatments? I'm single and do not have a 2nd income to

fall back on.

>

> Sorry for the long story, but I want to share where I'm coming from. I feel

terribly stuck between a rock and a hard place and am fearful of the financial

hole that this will continue to put me in. I feel like I have no future because

of the financial burdens and now I just see more of that coming my way...

>

> Any thoughts or stories you can share that may help me here?

>

> Thank you!

>

March 14, 2011

Dear ,

I'd suggest calling the best achalasia surgeon in Denver and talking to his/her

office staff. They WANT to see you and they will pull you through the medical

hoops instead of you having to push your way through. If you have an HMO or

limitations on your network they know how to write the letters and do what is

necessary to get you out of network.

As hard as it is financially now, it is definitely a situation of a stitch in

time saves nine. The more you can do now saves you problems in the future.

The doctors will call you back! Having experience with achalasia treatment is

very prestigious for doctors. Go to the largest medical center you can possibly

get to and call the heads of the departments, regardless of your insurance now.

They really will call you back, probably within hours.

Good luck,

Sandy

> >

> > Hi Everyone,

> > I'm new to this group and I'm so glad I found it. I am a 39 year old female

and live in Denver, CO.

> >

> > I started noticing some difficulty swallowing in Nov 2006. Got a diagnosis

of " Achalasia " in April 2008 and a Botox treatment, which is what the doc

advised. I was basically told nothing about Achalasia except that it gets worse.

The botox worked very well, so that combined with lack of understanding of truly

what the implications were and being in denial left me pretty much untreated

except that one Botox injection. I thought maybe it was going away!

> >

> > Well, the swallowing problems started getting bad again a little over a year

ago and the choking started in about May of 2010. It hit me with a vengence. I

lost my job the prior year and was without health insurance, so I just sort of

dealt with it. Ended up in the public hospital urgent care in June 2010 because

I couldn't get but a tiny bit of food or water down for nearly 3 days.

> >

> > They did another Botox injection and sent me on my way. It seemed to take

for about 2 weeks and then I was back to nighttime and day time choking, not

being able to swallow foods, etc. The doctor who did the treatment himself said

that he would NOT get surgery for it at that hospital, so that ended that deal.

Well,I found a temp position a month later and was finally offered full time

with benefits which kicked in this January.

> >

> > Unfortunately I had accumulated debt during the year of being unemployed

(plus before the A started I was very ill with some mysterious immune-related

illness, thought it was Lyme--put me in a major hole financially). Anyway, when

I was signing up for health insurance, I have been so backed up on bills that I

felt I could not afford to pay the monthly cost for the better-coverage health

care option--which would have prevented me from paying other monthly bills. I

am KICKING myself now over this decision. But at the time it was just so much

pressure and no one to process this with. Anyway, I'm in a situation now where I

realize that I cannot ignore this A issue any longer. I'm getting educated in

this forum and now I need to move forward with getting some expert help.

> >

> > My question is this: How have you all dealt with the financial burden of

having A and all of its treatments? I'm single and do not have a 2nd income to

fall back on.

> >

> > Sorry for the long story, but I want to share where I'm coming from. I feel

terribly stuck between a rock and a hard place and am fearful of the financial

hole that this will continue to put me in. I feel like I have no future because

of the financial burdens and now I just see more of that coming my way...

> >

> > Any thoughts or stories you can share that may help me here?

> >

> > Thank you!

> >

>

March 14, 2011

Thank you Sandy and . I appreciate your insight and advice.

How do I go about finding the best doctors? I live in Denver. I have no clue how

to even start locating a doctor who is experienced with Achalasia here. And how

do I rate what makes a doctor the " best " ? What criteria do I use and what

process do I go through to find these doctors to rate them? Do I just start

calling hospitals and ask for the GI department? And then who should I speak

with--I can't imagine the doctor him/herself would be available to speak with on

the phone, would they? I cannot imagine it would make sense to have appointments

with each doctor I find in the directory to interview them... I don't even know

how to begin!!

If there are better doctors outside of the Denver area, would you recommend

going to them instead of staying local? That sounds like what you are inferring

in the emails below. And how do I find those doctors?

Any help that anyone can shed on this topic of starting at ground zero on this

process would be helpful!

Thank you all SO much---this forum has been a Godsend!

> > >

> > > Hi Everyone,

> > > I'm new to this group and I'm so glad I found it. I am a 39 year old

female and live in Denver, CO.

> > >

> > > I started noticing some difficulty swallowing in Nov 2006. Got a diagnosis

of " Achalasia " in April 2008 and a Botox treatment, which is what the doc

advised. I was basically told nothing about Achalasia except that it gets worse.

The botox worked very well, so that combined with lack of understanding of truly

what the implications were and being in denial left me pretty much untreated

except that one Botox injection. I thought maybe it was going away!

> > >

> > > Well, the swallowing problems started getting bad again a little over a

year ago and the choking started in about May of 2010. It hit me with a

vengence. I lost my job the prior year and was without health insurance, so I

just sort of dealt with it. Ended up in the public hospital urgent care in June

2010 because I couldn't get but a tiny bit of food or water down for nearly 3

days.

> > >

> > > They did another Botox injection and sent me on my way. It seemed to take

for about 2 weeks and then I was back to nighttime and day time choking, not

being able to swallow foods, etc. The doctor who did the treatment himself said

that he would NOT get surgery for it at that hospital, so that ended that deal.

Well,I found a temp position a month later and was finally offered full time

with benefits which kicked in this January.

> > >

> > > Unfortunately I had accumulated debt during the year of being unemployed