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Will it need a moderator, to at least get ideas and discussions going?

Will an invitation be posted on ADA list?

I know this will work if word gets out.

Marti

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  • 5 years later...

Barby, on blogger you should be able to choose one of several ways to leave a

message. One way is to use open something or other. It starts with " open. " . Then

you type in your name and website, which you might not have a website ...+h

yeah, its called " open ID- that's what it is. You can fill in that part instead

of your blogger ID- I have 3 google email adresses, and I used to have seven.

Love, BObby

Sent via BlackBerry from T-Mobile

(unknown)

diane i love the poem on your blog!!! i have been trying to leave a

comment but....you guessed it i cant remember my blogger password and

cant find out how to reset it. MAD COW !!!!!!! i really need to start

writing these pass words down lol.anyways would you mind if i printed

your poem to keep in my book of things i want to remember ? you have a

very talented gift my friend, it could very well be a calling for you

my friend.love you barby ps any ideas on how to get into my acct. to

reset the password? lol

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Thank you for your kind words Barby.  Of course, you may copy the poem.  It was

a gift from the Lord to me at an extremely difficult time when the end was near

for Terry.  I would be thrilled to know someone else was helped by it.  As or

your password, I'll have to work on that one!  Love you!

 

 

 

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Thursday, February 12, 2009 1:28:29 PM

Subject: (unknown)

diane i love the poem on your blog!!! i have been trying to leave a

comment but....you guessed it i cant remember my blogger password and

cant find out how to reset it. MAD COW !!!!!!! i really need to start

writing these pass words down lol.anyways would you mind if i printed

your poem to keep in my book of things i want to remember ? you have a

very talented gift my friend, it could very well be a calling for you

my friend.love you barby ps any ideas on how to get into my acct. to

reset the password? lol

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thanks bob-kat!!!

>

> Barby, on blogger you should be able to choose one of several ways

to leave a message. One way is to use open something or other. It

starts with " open. " . Then you type in your name and website, which

you might not have a website ...+h yeah, its called " open ID- that's

what it is. You can fill in that part instead of your blogger ID- I

have 3 google email adresses, and I used to have seven. Love, BObby

> Sent via BlackBerry from T-Mobile

>

> (unknown)

>

>

> diane i love the poem on your blog!!! i have been trying to leave a

> comment but....you guessed it i cant remember my blogger password

and

> cant find out how to reset it. MAD COW !!!!!!! i really need to

start

> writing these pass words down lol.anyways would you mind if i

printed

> your poem to keep in my book of things i want to remember ? you

have a

> very talented gift my friend, it could very well be a calling for

you

> my friend.love you barby ps any ideas on how to get into my acct.

to

> reset the password? lol

>

>

>

>

>

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Tracey

My prayers are with you.  I am on the list waiting for a kidney and liver

transplant.

Lyncia

 

My life is really different now, but it is my life.  God helps us choose our

path!

Subject: (unknown)

To: livercirrhosissupport

Date: Thursday, February 12, 2009, 7:46 PM

Hi Everybody,

Just thought I would let you all know

that Brad is currently being evaluated at

The Royal Prince Alfred Hospital in Sydney

to go on the waiting list for a double liver

and kidney transplant. There are so many doctors

and specialists and tests that need to be done.

Tracey.

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That's great news!

MaC

Subject: (unknown)

To: livercirrhosissupport

Date: Thursday, February 12, 2009, 5:46 PM

Hi Everybody,

Just thought I would let you all know

that Brad is currently being evaluated at

The Royal Prince Alfred Hospital in Sydney

to go on the waiting list for a double liver

and kidney transplant. There are so many doctors

and specialists and tests that need to be done.

Tracey.

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Praying for Brad and for you!  Be sure to keep us updated on his listing.

 

 

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Thursday, February 12, 2009 7:46:26 PM

Subject: (unknown)

Hi Everybody,

Just thought I would let you all know

that Brad is currently being evaluated at

The Royal Prince Alfred Hospital in Sydney

to go on the waiting list for a double liver

and kidney transplant. There are so many doctors

and specialists and tests that need to be done.

Tracey.

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hey diane

 

i really look up to you and you have really inspired me to get closer and closer

to the lord. i really feel that you have help me out so much because i read all

what you write to other people in here and it does lift me up. i just want to

thank you for all your support. linda

Subject: Re: (unknown)

To: livercirrhosissupport

Date: Friday, February 13, 2009, 5:56 AM

Praying for Brad and for you!  Be sure to keep us updated on his listing.

 

 

Warm Hugs........ ...

 

Diane

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: sexylovelymum <palmerfamily10@ hotmail.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Thursday, February 12, 2009 7:46:26 PM

Subject: (unknown)

Hi Everybody,

Just thought I would let you all know

that Brad is currently being evaluated at

The Royal Prince Alfred Hospital in Sydney

to go on the waiting list for a double liver

and kidney transplant. There are so many doctors

and specialists and tests that need to be done.

Tracey.

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HI ,

Thank you for your kind words sweetie.  I apprecite them more than words can

express. 

How are you?  How is your husband?  I had you on my heart all day yesterday and

last night.  Wondering how things were going for you?  My offer still stands; if

you need me call me collect.  I am here either on my home phone or my cell

phone.  If you can't reach one, try the other.  Do you still have the numbers? 

I love you and I am praying for you , and for your husband.  I have walked

where you are walking now.  It is hard and if I can be of any help at all to

you, I want do so.

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Friday, February 13, 2009 5:01:02 AM

Subject: Re: (unknown)

hey diane

 

i really look up to you and you have really inspired me to get closer and closer

to the lord. i really feel that you have help me out so much because i read all

what you write to other people in here and it does lift me up. i just want to

thank you for all your support. linda

From: diane chandler <dianechandler@ att.net>

Subject: Re: (unknown)

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Friday, February 13, 2009, 5:56 AM

Praying for Brad and for you!  Be sure to keep us updated on his listing.

 

 

Warm Hugs........ ...

 

Diane

http://auntdisexper imentallife. blogspot. com/

____________ _________ _________ __

From: sexylovelymum <palmerfamily10@ hotmail.com>

To: livercirrhosissuppo rtyahoogroups (DOT) com

Sent: Thursday, February 12, 2009 7:46:26 PM

Subject: (unknown)

Hi Everybody,

Just thought I would let you all know

that Brad is currently being evaluated at

The Royal Prince Alfred Hospital in Sydney

to go on the waiting list for a double liver

and kidney transplant. There are so many doctors

and specialists and tests that need to be done.

Tracey.

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, May God be with you and Brad. I am so moved by this news!! good luck to

you both.Love, Bobby

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Thursday, February 12, 2009 7:15:54 PM

Subject: (unknown)

" G'day from downunder !! "

Just thought I would drop you a line and let you all

know that Brad is currently being assessed at Royal Prince

Alfred Hospital in Sydney to go on the waiting list for a

double liver/kidney transplant. We have to see so many doctors

and specialists, and Brad has to have more tests done so all our

fingers and toes are crossed.

Tracey.

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Great news!  Will be praying for Brad's transplant Eval. and peace for you!

 

Hugs,

Pamela

Subject: (unknown)

To: livercirrhosissupport

Date: Thursday, February 12, 2009, 4:46 PM

Hi Everybody,

Just thought I would let you all know

that Brad is currently being evaluated at

The Royal Prince Alfred Hospital in Sydney

to go on the waiting list for a double liver

and kidney transplant. There are so many doctors

and specialists and tests that need to be done.

Tracey.

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  • 5 months later...
Guest guest

Dave:

Awful place to be!!! I'm praying against the odds that I will not have to make

that decision any day soon.

Way back when I found out in 2004 that my liver was already at Stage 3 with

bridging fibrosis, it stunned me to no end. Not knowing anything then, I of

course chose treatment immediately. The specialist that told me that news, said

it short and sweet and then I was out of the office. Lawd it was so funny when

I look back even today!! My little short Dad was at the office to meet me for

his ride home. I come out with just one thing on my mind and it wasn't his

banter for sure - I was heading straight for the door for a cigarette!! Once

I'd lit it, I then turned and told him what I'd just been told. Well, you could

see in his eyes that he wanted to be anywhere else than there and thinking - why

isn't her mother here right now!!! The last thing that my dad knows how to do,

is be there emotionally - just not in his makeup.

At any rate, some of the nurses that I was dealing with through the Liver

Society said that that's what they didn't like about the specialist.

Personally, all I could think, was that at least he gave me the straight up

goods and how many specialists do that??? I hate being in the dark about my own

health. This man did not know the first thing about me emotionally, so how

could I expect him to deal with that side of it?? Instead, I very quickly

contacted a counsellor, that fortunately knew me and had a few visits with her,

to get my feet back on the ground.

BTW, that round of treatment did not work and I was labelled a Non-Responder and

see ya in a year. I couldn't even see the reason to go back and see him. I

probably knew more about what was coming down the pipe than he did. However, my

GP convinced me to stay in touch with him by the second year - so I had another

5 minute chat with him.

I also found about 1-1/2 yrs after the diagnosis of Non-Response, that I wanted

to crawl under that rock and wished that the whole world would just go away. I

was still very fatigued all the time and had been left a very good case of

Fibromyalgia. Because I don't look sick at all, not many people could even come

close to understanding what we go through on a daily basis. Finally, I was so

fed up, I asked for and received some anti-depressants. That allowed me to get

to the bottom of what I was really going through and that was grief for the loss

of my health.

So, I just get there and out of nowhere - I'm asked to participate in a Clinical

Trial with the trio. Plus, I only had about 4 hours to decide. Fortunately, I

made the right decision for me because these drugs are not going to be available

any day soon in Canada and my liver had just then tipped over to cirrhosis.

However, the depression did deepen in the first few months and I actually was

falling into suidal thinking. So, I promptly got my GP to up my dose and I've

been fine ever since.

I've always said that I doubt I'd go for a liver transplant unless they could

guarantee me that someone younger didn't need it. However, I guess that we

would never know until that decision is directly in front of us!!! I still

would like to live lots more life and make lots more noise and irritate those

around me that choose to be irritated by my constant babbling!! Besides, unless

they give me hordes of morphine, I do not want to go out with liver disease.

Gloria

________________________________

Hi All....I was noticing some folks decide not to get a liver transplant.. .I

have and am grappling with this myself...I am concerned about the finances of

the whole process, along with other concerns...really have not decided yet on

the deal...not sure how close I am to needing to make that decision,

either...just kind of trying to ignore it all as best I can...I sure am glad to

find some people that know how I feel about this ESLD, emotionally and

physically.. ..I don't think the doc's could know the head games, fatigue, etc.

we go through...as dedicated as many doc's are, they can't know...my doc is at

the top in his field...working at Washington University and Hospital in

St. Louis...so I have total confidence in his abilities and his staff, but I

don't think even he understands the emotional roller coaster I am on...he

certainly knows about it, because I lay it all out there....thing is it seems

you have to be on the edge of death to get on

the list...I'm not sure what my MIL score is as of now...will find out next

appt. which is first of Nov...have two tests coming on Aug. 17th...often I think

of crawling under a big rock and staying, I get so tired of dealing with this...

Dave

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Guest guest

Hi Dave,

Dealing with this disease is confusing, exasperating, frustrating, often

humiliating, and so many more adjectives that my feeble brain can't bring

forward at the present!  When my husband was struggling to make the decision

about a transplant, he waffled back and forth so many times in an hour, much

less in a day or more!  It is a very personal decision and no one can really

understand your feelings.  As much as I love Terry, I struggled so much with his

decision.  It took a lot of praying for me to accept his decision and fully

support him.  There are resources available to assist with the financial

burden.  Just know that every question has an answer and you should find those

answers before you make your decision.

This group was a lifeline for me while I was taking care of my husband and after

he went home.  As you said, it is so helpful to know there are people who REALLY

understand and who aren't just giving lipservice to that.  I have made

friends here who will be with me for a lifetime.  I was always taught every

trial has it's blessing.  I have found that to be true, especially in this

situation.  I could never give back to these wonderful people what they have

given me, but I can try.  I'm looking forward to getting to know you better

Dave!  God bless!

 

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Thursday, August 6, 2009 7:29:03 PM

Subject: (unknown)

 

Hi All....I was noticing some folks decide not to get a liver transplant.. .I

have and am grappling with this myself...I am concerned about the finances of

the whole process, along with other concerns...really have not decided yet on

the deal...not sure how close I am to needing to make that decision,

either...just kind of trying to ignore it all as best I can...I sure am glad to

find some people that know how I feel about this ESLD, emotionally and

physically.. ..I don't think the doc's could know the head games, fatigue, etc.

we go through...as dedicated as many doc's are, they can't know...my doc is at

the top in his field...working at Washington University and Hospital in

St. Louis...so I have total confidence in his abilities and his staff, but I

don't think even he understands the emotional roller coaster I am on...he

certainly knows about it, because I lay it all out there....thing is it seems

you have to be on the edge of death to get on

the list...I'm not sure what my MIL score is as of now...will find out next

appt. which is first of Nov...have two tests coming on Aug. 17th...often I think

of crawling under a big rock and staying, I get so tired of dealing with

this...    

 Dave

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Guest guest

Great advice Barby!  I needed the reminder....thanks!

 

Warm Hugs...........

 

Diane

http://auntdisexperimentallife.blogspot.com/

________________________________

To: livercirrhosissupport

Sent: Thursday, August 6, 2009 8:18:28 PM

Subject: (unknown)

 

dave,i understand,weather you are the pt. or the caregivers,its the same

boat,just different seats.seems we all lose in the end.but on the good side we

all have each other,and i am here to tell ya without my friends and family here

i dont know what i would do.drs. dont have to ride the roller coaster with us i

agree. so hang in there ,lean on us as we will you.like bobby told me earlier in

his post ,the answers will come,sometimes when i get frantic i hear a voice tell

me...BE STILL! i know its GOD telling me this ,hes got this ,its bigger than me,

hes got this,so i just try my best to be still. much love barby

>

> Hi All....I was noticing some folks decide not to get a liver transplant.. .I

have and am grappling with this myself...I am concerned about the finances of

the whole process, along with other concerns...really have not decided yet on

the deal...not sure how close I am to needing to make that decision,

either...just kind of trying to ignore it all as best I can...I sure am glad to

find some people that know how I feel about this ESLD, emotionally and

physically.. ..I don't think the doc's could know the head games, fatigue, etc.

we go through...as dedicated as many doc's are, they can't know...my doc is at

the top in his field...working at Washington University and Hospital in

St. Louis...so I have total confidence in his abilities and his staff, but I

don't think even he understands the emotional roller coaster I am on...he

certainly knows about it, because I lay it all out there....thing is it seems

you have to be on the edge of death to get

on

> the list...I'm not sure what my MIL score is as of now...will find out next

appt. which is first of Nov...have two tests coming on Aug. 17th...often I think

of crawling under a big rock and staying, I get so tired of dealing with

this...    

>  Dave

>

>

>

>

>

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  • 7 months later...
Guest guest

Medicare will at least backdate Part A to the month of transplant. You can try to get them to retro the Part B back that far but I am not sure if they will. That is what the patient will need to cover the immunos. Why was the 2728 submitted so late? Yikes.

The EGHP will flip after 30 months cob from the entitlement date. As long as Medicare has the correct transplant date in their system, the CWF should reflect the correct COB date.

Fornash Transplant Financial Coordinator Kidney & Pancreas Mayo Clinic ville (904) 953.6062 phone (904) 953.2681 fax fornash.angela@...

From: TxFinancialCoordinators [mailto:TxFinancialCoordinators ] On Behalf Of LaVinia PittsSent: Tuesday, March 09, 2010 1:13 PMTo: TxFinancialCoordinators Subject: (unknown)

Hello Fellow TFC's,

Scenario: Patient was transplanted 10 months ago with EGHP coverage, never on dialysis. 2728 form submitted 10 months status post. What is the likelihood that Medicare will back date his effective date to the first of the month in which he was transplanted so that he is able to obtain immunos thru Medicare? What is the likelihood that EGHP will assume secondary payor status after 30 months of being transplanted? All responnses are greatly appreciated.

Thanks

La'Vinia Pitts

Temple University Health System

Philadelphia, PA

la'vinia.pittstuhs (DOT) temple.edu

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Guest guest

From what I understand, you have up to a year after transplant to apply for

Medicare. We have had this scenario before, the patient has a good commercial

insurance and is very young (30), feels like they don't need Medicare despite

what we encourage. Well she loses her job and commercial insurance, says she

cannot affort COBRA and decides she wants that Medicare after all. But she lost

her job 14 months post transplant and could not get Medicare started.

Patti Montemayor, RN CCTC

Transplant Coordinator

and White Hospital

2401 S. 31st Street

Temple, TX 76508

254/724-8448

FAX 254/724-8772

>>> " Fornash, M. " 3/9/2010 2:09 PM >>>

Medicare will at least backdate Part A to the month of transplant. You

can try to get them to retro the Part B back that far but I am not sure

if they will. That is what the patient will need to cover the immunos.

Why was the 2728 submitted so late? Yikes.

The EGHP will flip after 30 months cob from the entitlement date. As

long as Medicare has the correct transplant date in their system, the

CWF should reflect the correct COB date.

Fornash

Transplant Financial Coordinator

Kidney & Pancreas

Mayo Clinic ville

(904) 953.6062 phone

(904) 953.2681 fax

fornash.angela@...

________________________________

From: TxFinancialCoordinators

[mailto:TxFinancialCoordinators ] On Behalf Of LaVinia

Pitts

Sent: Tuesday, March 09, 2010 1:13 PM

To: TxFinancialCoordinators

Subject: (unknown)

Hello Fellow TFC's,

Scenario: Patient was transplanted 10 months ago with EGHP coverage,

never on dialysis. 2728 form submitted 10 months status post. What is

the likelihood that Medicare will back date his effective date to the

first of the month in which he was transplanted so that he is able to

obtain immunos thru Medicare? What is the likelihood that EGHP will

assume secondary payor status after 30 months of being transplanted? All

responnses are greatly appreciated.

Thanks

La'Vinia Pitts

Temple University Health System

Philadelphia, PA

la'vinia.pitts@...

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Guest guest

Thanking those who answered my question for your rapid response. I wanted to check to see if I was on the right page. Have a good day.

La'Vinia

To: TxFinancialCoordinators Sent: Tue, March 9, 2010 3:28:47 PMSubject: RE: (unknown)

From what I understand, you have up to a year after transplant to apply for Medicare. We have had this scenario before, the patient has a good commercial insurance and is very young (30), feels like they don't need Medicare despite what we encourage. Well she loses her job and commercial insurance, says she cannot affort COBRA and decides she wants that Medicare after all. But she lost her job 14 months post transplant and could not get Medicare started.Patti Montemayor, RN CCTCTransplant Coordinator and White Hospital2401 S. 31st StreetTemple, TX 76508254/724-8448FAX 254/724-8772>>> "Fornash, M." <Fornash.@ Mayo.Edu> 3/9/2010 2:09 PM >>>Medicare will at least backdate Part A to the month of transplant. Youcan try to get them to retro the Part B

back that far but I am not sureif they will. That is what the patient will need to cover the immunos.Why was the 2728 submitted so late? Yikes.The EGHP will flip after 30 months cob from the entitlement date. Aslong as Medicare has the correct transplant date in their system, theCWF should reflect the correct COB date. Fornash Transplant Financial Coordinator Kidney & Pancreas Mayo Clinic ville (904) 953.6062 phone (904) 953.2681 fax fornash.angela@ mayo.edu ____________ _________ _________ __From: TxFinancialCoordina tors@yahoogroups .com [mailto:TxFinancialCoordina tors@yahoogroups .com] On Behalf Of LaViniaPittsSent: Tuesday, March 09, 2010 1:13 PMTo: TxFinancialCoordina tors@yahoogroups .com Subject: [TxFinancialCoordin ators] (unknown)Hello Fellow TFC's, Scenario: Patient was transplanted 10 months ago with EGHP coverage,never on dialysis. 2728 form submitted 10 months status post. What isthe likelihood that Medicare will back date his effective date to thefirst of the month in which he was transplanted so that he is able toobtain immunos thru Medicare? What is the likelihood that EGHP willassume secondary payor status after 30 months of being

transplanted? Allresponnses are greatly appreciated.ThanksLa'Vinia Pitts Temple University Health SystemPhiladelphia, PAla'vinia.pitts@ tuhs.temple. edu <mailto:la'vinia.pitts@ tuhs.temple. edu>

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Guest guest

lol

LaVinia Pitts wrote:

Thanking those who answered my question for your rapid response.

I wanted to check to see if I was on the right page. Have a good day.

La'Vinia

From: Patti Montemayor <PMontemayor@

SWMail.SW. Org>

To: TxFinancialCoordina tors@yahoogroups .com

Sent: Tue, March 9, 2010 3:28:47 PM

Subject: RE: [TxFinancialCoordin ators] (unknown)

From what I understand, you have up to a year after transplant to

apply for Medicare. We have had this scenario before, the patient has a

good commercial insurance and is very young (30), feels like they don't

need Medicare despite what we encourage. Well she loses her job and

commercial insurance, says she cannot affort COBRA and decides she

wants that Medicare after all. But she lost her job 14 months post

transplant and could not get Medicare started.

Patti Montemayor, RN CCTC

Transplant Coordinator

and White Hospital

2401 S. 31st Street

Temple, TX 76508

254/724-8448

FAX 254/724-8772

>>> "Fornash, M." <Fornash.@ Mayo.Edu>

3/9/2010 2:09 PM >>>

Medicare will at least backdate Part A to the month of transplant. You

can try to get them to retro the Part B back that far but I am not sure

if they will. That is what the patient will need to cover the immunos.

Why was the 2728 submitted so late? Yikes.

The EGHP will flip after 30 months cob from the entitlement date. As

long as Medicare has the correct transplant date in their system, the

CWF should reflect the correct COB date.

Fornash

Transplant Financial Coordinator

Kidney & Pancreas

Mayo Clinic ville

(904) 953.6062 phone

(904) 953.2681 fax

fornash.angela@

mayo.edu

____________ _________ _________ __

From: TxFinancialCoordina

tors@yahoogroups .com

[mailto:

responnses are greatly appreciated.

Thanks

La'Vinia Pitts

Temple University Health System

Philadelphia, PA

la'vinia.pitts@

tuhs.temple. edu <mailto:la'vinia.pitts@

tuhs.temple. edu>

--------------------

This electronic message is intended to be for the use only of the named recipient, and may contain information that is confidential or privileged. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution or use of the contents of this message is strictly prohibited. If you have received this message in error or are not the named recipient, please notify us immediately by contacting the sender at the electronic mail address noted above, and delete and destroy all copies of this message. Thank you.

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  • 2 weeks later...
Guest guest

Thanks

for your response! Yes, they show auto company primary. But Medicare assured

me that this is in place for medical claims related to auto and the transplant

claims will bill through Medicare primary when submitted. They also gave me a

phone number to Medicare Secondary payor recovery to have patient call and get

removed.

From: TxFinancialCoordinators

[mailto:TxFinancialCoordinators ] On Behalf Of

Sent: Wednesday, March 24, 2010 12:13 PM

To: TxFinancialCoordinators

Subject: (unknown)

Hi Missy- I am not sure if anyone has responded to you. Does Medicare have

these companies listed as primary (which they should not). If not, I would recommend

the patient calling the billing department to have his insurance updated. Feel

free to call me if you need anything else at .

McDermott,Transplant Operations Analyst

Methodist University Hospital Transplant Inst.

>

>

> Any suggestions on this one?

>

> I now have 3 patients that show that an auto insurance company is primary.

They are having issues with getting it removed so that Medicare is primary. Any

suggestions on who to call to get this straightened out? I was having them call

Medicare COB and they are not getting it resolved!

>

>

> Missy Trammell*

> Transplant Financial Coordinator

>

> Research Medical Center

> 6400 Prospect, Ste 328

> Kansas City, MO 64132

> phone

> fax

> melisa.trammell@...

>

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