Re: J-Tube,

[Guest guest]

isabella- I'm so happy the infection has cleared. I worry about you becoming

septic. I hope we get an appointment at cleveland clinic soon. uva was suppose

to send his records and then the finance people are suppose to call. I don't

hold out for much happening this coming week due to the christmas but I'm going

to call cleveland tomorrow to see if they have gotten the recods from uva. I

agree, noone should have to go through this crap. my son is so much more

accepting than I am. I'm sure I would be throwing fits by now. his tube was also

suppose to be " short term " . their definition of short term and mine are vastly

different. I hoping these next treament interventions go well for you. I'm

wishing you and your husband the best of this season and a very happy and

healthy new year...angela

[Guest guest]

,

I'm sorry to hear about all the delays for your son's treatment.

I hope you can get him to Cleveland Clinic soon. I just wanted to add

that you may have to stay on top of the records department at uva.

When we requested records to be sent to Cleveland from U of Michigan,

they took 6 weeks to get there. We just figured we had allowed them

enough time to send them and that they were working on them promptly.

Not so, because the day of my husband's appointment (6 weeks after we

requested records), only part of the records had been overnighted to

Cleveland. It may help if you let them know this is an urgent case.

At Cleveland, when we later requested records to be sent to someplace

else, they told us to write " STAT " on the request form, stating that

he had an appointment date (even if we made it up) that the records

were needed by. Hope this helps!

Hope your holidays are happy!

in c-c-c-cold Michigan

>

> isabella- I'm so happy the infection has cleared. I worry about you

becoming septic. I hope we get an appointment at cleveland clinic

soon. uva was suppose to send his records and then the finance people

are suppose to call. I don't hold out for much happening this coming

week due to the christmas but I'm going to call cleveland tomorrow to

see if they have gotten the recods from uva. I agree, noone should

have to go through this crap. my son is so much more accepting than I

am. I'm sure I would be throwing fits by now. his tube was also

suppose to be " short term " . their definition of short term and mine

are vastly different. I hoping these next treament interventions go

well for you. I'm wishing you and your husband the best of this

season and a very happy and healthy new year...angela

>

[Guest guest]

Hi ,

Yes, I am so glad myself that the infection has cleared too! Ah well, just a few

more months and the tube will be out of my body, of that I am sure.

I am sorry you have to wait this long for the treatment for your son. Sometimes

I think for us who need to undergo this all it's easier than for those who have

to watch us undergoing it... I think I would be freaking out as a mum when my

kids had to undergo what I undergo right now, but on the otherhand while

undergoing it, I don't think it's as bad as it might seem to those standing at

my side. And it doesn't matter how often and in which way I tell them not to

worry, they still keep worrying...

Things will work out just fine for your son as well, . It just takes time

and a whole lot of patience. But you are right, at this time in life, he should

be making fun and not worrying about getting healthy again!

Wishing you and your family, as well as all the other board members and their

families, a Merry Christmas and a very very happy and above all healthy and

stress free 2009!

Lots of love,

Isabella

________________________________

From: ANGELA BAKER <kotacj@...>

achalasia

Sent: Monday, December 22, 2008 3:08:04 AM

Subject: Re: J-Tube,

isabella- I'm so happy the infection has cleared. I worry about you becoming

septic. I hope we get an appointment at cleveland clinic soon. uva was suppose

to send his records and then the finance people are suppose to call. I don't

hold out for much happening this coming week due to the christmas but I'm going

to call cleveland tomorrow to see if they have gotten the recods from uva. I

agree, noone should have to go through this crap. my son is so much more

accepting than I am. I'm sure I would be throwing fits by now. his tube was also

suppose to be " short term " . their definition of short term and mine are vastly

different. I hoping these next treament interventions go well for you. I'm

wishing you and your husband the best of this season and a very happy and

healthy new year...angela

[Guest guest]

thanks for the tip brenda. the insurance company called to day and told us they

will be denying our coverage to cleveland. merry christmas son. I am so damned

discouraged...angela

[Guest guest]

Hi ,

How can they just refuse that? Does it make any difference for the insurance

company whether you go to Cleveland or another hospital? Would Cleveland be more

expensive? What has Dr. Rice to say about this? Have you informed them that

Cleveland is one of the best and that it might save them money in the end, since

Cleveland has less re-do's than other hospitals with less experience?

Sorry, but I don't understand the American health system and insurance system

enough to give you any real advice here. Once again I am happy to be over here

in The Netherlands, where it comes to health we never have to worry moneywise. I

can only hope things will work out fine in the end for you and of that I am

convinced. Keep fighting, don't give up (but I'm sure you won't).

Love,

Isabella

________________________________

From: ANGELA BAKER <kotacj@...>

achalasia

Sent: Tuesday, December 23, 2008 1:19:06 AM

Subject: Re: Re: J-Tube,

thanks for the tip brenda. the insurance company called to day and told us they

will be denying our coverage to cleveland. merry christmas son. I am so damned

discouraged. ..angela

[Guest guest]

Hi, ,

 

      I hope your son's situation can get cleared up IMMEDIATELY.

 

I just don't understand why things seem so slow lately with loads of medical

information I've been hearing.  Ugh!  It makes me angry.

For what it's worth, when I get enervated, I eat a low-fat ice cream bar and it

never fails to give me a lift.

Then, I go back to the fight.

 

On your behalf and on your son's behalf, I will think strong and healthy

thoughts!

And, Happy Holidays, too!

 

Deborah

[Guest guest]

,

I'm so sorry! Is there some kind of appeal process that you can

start? Don't give up the fight! Many years ago, my sister-in-law

worked for an insurance company (just a small one). Sometimes, if the

subscribers would appeal or bug them enough, they would just give in

and pay. The insurance companies count on people giving up and then

they save money. Please don't get discouraged! Your son needs you!

I will pray that they come to their senses and cover his visit to

Cleveland. Have you talked to anyone from Dr. Rice's office? Maybe

they can help. Wishing you the best of luck with this!!

Hugs,

in Michigan

>

> thanks for the tip brenda. the insurance company called to day and

told us they will be denying our coverage to cleveland. merry

christmas son. I am so damned discouraged...angela

>

[Guest guest]

, My thoughts are with you. My friend who once worked for an

insurance company said when the state insurance commissioner was

copied and a complaint made, the patient immediately moved up the

chain of command and the lawyers would look at it to prevent

litigation. The insurance commissioner in your state scares them.

Start copying them on emails or letters or open a complaint. Also

copy your state and US political representatives on everything.

Political people look for examples. Have a short summary ready for

background info. I know you know all this already.

Also, although Dr. Rice is highly regarded, there may be someone

locally that your insurance company will compromise with.

Sandy

> >

> > thanks for the tip brenda. the insurance company called to day and

> told us they will be denying our coverage to cleveland. merry

> christmas son. I am so damned discouraged...angela

> >

>

[Guest guest]

thanks sandy. your right about the state insurance commisioner. when I was told

we were denied I ask the case manager if I should contact the commisioner she

immediately said oh no you don't need to do that. after talking with you all

this morning I got a call from my sons pc office. she asked me if I was told

about the paperwork that needed to be done to begin the appeal process. I was

never told about this and said so. she told me she would call my insurance

company and have them send we the forms. we " ll see if it comes through. I'v been

at this since june. I think that's long enough...angela

[Guest guest]

Don't trust anyone to do what they say, so you are pleasantly surprised

if they do. JUST IN CASE, send an email to yourself to document every

phone call and save in a specail folder for this. No paperwork, but

I'll bet you at some point you will want to document who said what,

when and what happened to prove your case. That is the easiest way

I've found to keep records handy. Double check that she does this and

send them an email or make a phone call also. Things get lost on

desks.

When my Dad first checked into a prestigious hospital, this charming

person came to visit and left his card. Said if there were any

problems with his care or any concerns, to call him immediately. So in

retrospect, although there weren't any major issues, he was there to

ward off any serious complaints before they reached a crisis. His

title was something like personal care consultant or something that

sounded very patient friendly. His salary, I'm guessing was well worth

the warm fuzzy or intervention before something went widely amiss that

could escalate to malpractice. I found out later, he wasn't an md,

but a lawyer, with medical background. Probably a wise position, but

they could be warm and fuzzy just to placate you also and convince you

to stay on their track.

I'm very trusting and do expect that people will do what they say, but

have been burned and backstabbed many times, and have often wished for

better records, because people like that will throw back to you that

you didn't EXACTLY say something or it was another time. Just pretend

you might have to go to court. The whole goal is to get the best

treatment you can in the best time... not that I'm advocating legal

steps at all, just steps to make people accountable and make sure they

realize you aren't to be messed with.

Sandy

>

> thanks sandy. your right about the state insurance commisioner. when

I was told we were denied I ask the case manager if I should contact

the commisioner she immediately said oh no you don't need to do that.

after talking with you all this morning I got a call from my sons pc

office. she asked me if I was told about the paperwork that needed to

be done to begin the appeal process. I was never told about this and

said so. she told me she would call my insurance company and have them

send we the forms. we " ll see if it comes through. I'v been at this

since june. I think that's long enough...angela

>

[Guest guest]

great suggestion. with so much going on all the time I sometimes fail to realize

what some of the impilication could be for the future.thanks and happy new

year...angela