Re: Cleveland Clinic - Lung Transplant - Med Retirement

[Guest guest]

Ellen,

Welcome! Please don't ever hesitate to post for fear of 'showing your ignorance'. This isn't instinct, we've all had to learn all this stuff. There is a huge learning curve once one is diagnosed with any illness. I certainly wasn't born knowing about pulmonary fibrosis and I doubt anyone else was either. LOL

Your story sounds painfully familiar but it does sound like you are getting excellent care. I'm not familiar with the med retirement process from the DOD or anywhere for that matter. Maybe we've got another lurker who could share their experience with you.

Medicare absolutely pays transplant costs. As long as the facility accepts assignment you should not have problems. I've been on SSDI now for 2 and a half years and Medicare since last November. Again there is a learning curve for all the rules (I don't think I'll ever master them. Mainly cause the constantly change)

Please continue to post and ask questions. I'm hoping someone may be able to supply you with more information. I'm glad you have joined us!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, June 4, 2009 11:07:04 AMSubject: Cleveland Clinic - Lung Transplant - Med Retirement

Good Morning to All,

Long subject line!

You really don't know me but I know most of you through your e-mails. Like many people I have been lurking for quite awhile reading for info and just not wanting to show my ignorance. Let me begin with the same story that I have read over and over again:

Ellen – in Sept 2008 seemed to just run out of breath walking to my car after work one day. Ended up in the ER and after nine days in the hospital and every test that seemed possible/a Bronch and was dx with Sarcoidosis. I was treated with Pred of course/oxy 24/7. Seemed to get a little better at first but as soon as they took me down on Pred I went down hill fast and never returned…Ended up with a wonderful pulm from OSU. Ended up in the OSU ER and Hosp for another two weeks. After all the testing/biopsies etc it was determined that I have PF and NOT Sarc…They have no idea, after many, many blood tests, what is causing the inflammation and in fact as of three weeks ago I am getting worse. I am now going to Cleveland Clinic for testing and

interviews for a lung transplant. They have been in contact with me and gave me some hope, and told me to call my insurance concerning the cost of, lodging, transportation (I live more than one hr away from Cleveland), and post prescriptions. I did, the answers I received was – no – no – yes. That all being said or possibly repeated, I apologize if I repeated anything, I have some questions, especially after reading the e-mails concerning the Lung Center in PA.

Ø Is anyone familiar with the Cleveland Clinic? (I have been to the site and just see general info)

Ø Does anyone have any idea what a charter flight would cost? I can only imagine

Ø I see in PA they have places for people to stay before/after transplant – I am assuming Cleveland has that also.

Ø Is there anyone who has had to put in for medical retirement from the DoD? I am in the process of this as of three weeks ago. Very painful

Ø I am 60 therefore have to go the med retirement and then SS. Does medicare help w/transplants?

Of course I may not even make the list. I hope so.

Any suggestions, advice, help, ideas would be greatly appreciated. Ok now I am actually going to send this.....

Best Regards

ellen

[Guest guest]

Beth,

My mid name is also Beth - ellen beth - Anyhoo thank you for the info. I don't

know if I will get SS, I think I do along with my Fed med retirement. Do you

happen to know if SS covers the transportation and lodging?

Best Regards

ellen

[Guest guest]

Beth,

My mid name is also Beth - ellen beth - Anyhoo thank you for the info. I don't

know if I will get SS, I think I do along with my Fed med retirement. Do you

happen to know if SS covers the transportation and lodging?

Best Regards

ellen

[Guest guest]

Dear Ellen,

I have an appointment at CCF on the 11th. I'll bring you up to date

afterwards.

PJ

>

>

> Good Morning to All,

>

>

>

> Long subject line!

>

>

>

> You really don't know me but I know most of you through your e-mails.

> Like many people I have been lurking for quite awhile reading for info

> and just not wanting to show my ignorance. Let me begin with the same

> story that I have read over and over again:

>

> Ellen – in Sept 2008 seemed to just run out of breath walking to

my

> car after work one day. Ended up in the ER and after nine days in the

> hospital and every test that seemed possible/a Bronch and was dx with

> Sarcoidosis. I was treated with Pred of course/oxy 24/7. Seemed to get

> a little better at first but as soon as they took me down on Pred I

went

> down hill fast and never returned…Ended up with a wonderful pulm

> from OSU. Ended up in the OSU ER and Hosp for another two weeks. After

> all the testing/biopsies etc it was determined that I have PF and NOT

> Sarc…They have no idea, after many, many blood tests, what is

> causing the inflammation and in fact as of three weeks ago I am

getting

> worse. I am now going to Cleveland Clinic for testing and interviews

> for a lung transplant. They have been in contact with me and gave me

> some hope, and told me to call my insurance concerning the cost of,

> lodging, transportation (I live more than one hr away from Cleveland),

> and post prescriptions. I did, the answers I received was – no

> – no – yes. That all being said or possibly repeated, I

> apologize if I repeated anything, I have some questions, especially

> after reading the e-mails concerning the Lung Center in PA.

>

>

>

> Ø Is anyone familiar with the Cleveland Clinic? (I have been to the

> site and just see general info)

>

> Ø Does anyone have any idea what a charter flight would cost? I can

> only imagine

>

> Ø I see in PA they have places for people to stay before/after

> transplant – I am assuming Cleveland has that also.

>

> Ø Is there anyone who has had to put in for medical retirement from

> the DoD? I am in the process of this as of three weeks ago. Very

painful

>

> Ø I am 60 therefore have to go the med retirement and then SS. Does

> medicare help w/transplants?

>

>

>

> Of course I may not even make the list. I hope so.

>

> Any suggestions, advice, help, ideas would be greatly appreciated. Ok

> now I am actually going to send this.....

>

>

>

> Best Regards

>

> ellen

>

[Guest guest]

PJ,

Thank you so much. That is great. Good Luck...ellen

> >

> >

> > Good Morning to All,

> >

> >

> >

> > Long subject line!

> >

> >

> >

> > You really don't know me but I know most of you through your e-mails.

> > Like many people I have been lurking for quite awhile reading for info

> > and just not wanting to show my ignorance. Let me begin with the same

> > story that I have read over and over again:

> >

> > Ellen – in Sept 2008 seemed to just run out of breath walking to

> my

> > car after work one day. Ended up in the ER and after nine days in the

> > hospital and every test that seemed possible/a Bronch and was dx with

> > Sarcoidosis. I was treated with Pred of course/oxy 24/7. Seemed to get

> > a little better at first but as soon as they took me down on Pred I

> went

> > down hill fast and never returned…Ended up with a wonderful pulm

> > from OSU. Ended up in the OSU ER and Hosp for another two weeks. After

> > all the testing/biopsies etc it was determined that I have PF and NOT

> > Sarc…They have no idea, after many, many blood tests, what is

> > causing the inflammation and in fact as of three weeks ago I am

> getting

> > worse. I am now going to Cleveland Clinic for testing and interviews

> > for a lung transplant. They have been in contact with me and gave me

> > some hope, and told me to call my insurance concerning the cost of,

> > lodging, transportation (I live more than one hr away from Cleveland),

> > and post prescriptions. I did, the answers I received was – no

> > – no – yes. That all being said or possibly repeated, I

> > apologize if I repeated anything, I have some questions, especially

> > after reading the e-mails concerning the Lung Center in PA.

> >

> >

> >

> > Ø Is anyone familiar with the Cleveland Clinic? (I have been to the

> > site and just see general info)

> >

> > Ø Does anyone have any idea what a charter flight would cost? I can

> > only imagine

> >

> > Ø I see in PA they have places for people to stay before/after

> > transplant – I am assuming Cleveland has that also.

> >

> > Ø Is there anyone who has had to put in for medical retirement from

> > the DoD? I am in the process of this as of three weeks ago. Very

> painful

> >

> > Ø I am 60 therefore have to go the med retirement and then SS. Does

> > medicare help w/transplants?

> >

> >

> >

> > Of course I may not even make the list. I hope so.

> >

> > Any suggestions, advice, help, ideas would be greatly appreciated. Ok

> > now I am actually going to send this.....

> >

> >

> >

> > Best Regards

> >

> > ellen

> >

>

[Guest guest]

Ellen

yes Medicare does help pay for transplants, but you need a supplemental to cover the 20% that medicare does not pay for and that can be quite expensive

i live about an hour from Penn, and was told that I have 2 hours from the time of the call to get to the hospital for transplant

if Jerry is not at home, i have some neighbors who could drive me or I would call 911

i wanted to make arrangements with the local ambulance, but they said to call 911

re: insurance -- yes there are a million phone calls to be made and a million hours spent on hold waiting for answers -- i went through this about 6 months ago

there is a lady in Texas who arranged for a charter flight when the call came

there might be someone who posts who goes to the Cleveland clinic, but i'm not sure

when i went for my 3 day eval at Penn, it included meetings with the social worker and financial representative, then about 6 months ago when insurance issues appeared, there were many phone calls and emails with them

There is also the NTAF -- national transplant assistance fund -- they help with fundraising for post transplant -- www.transplantfund.org

contact them and get their packet so you can explore that as an option

with this disease, you need to become knowledgeable about both medical issues and financial issues

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Cleveland Clinic - Lung Transplant - Med RetirementTo: Breathe-Support Date: Thursday, June 4, 2009, 11:07 AM

Good Morning to All,

Long subject line!

You really don't know me but I know most of you through your e-mails. Like many people I have been lurking for quite awhile reading for info and just not wanting to show my ignorance. Let me begin with the same story that I have read over and over again:

Ellen – in Sept 2008 seemed to just run out of breath walking to my car after work one day. Ended up in the ER and after nine days in the hospital and every test that seemed possible/a Bronch and was dx with Sarcoidosis. I was treated with Pred of course/oxy 24/7. Seemed to get a little better at first but as soon as they took me down on Pred I went down hill fast and never returned…Ended up with a wonderful pulm from OSU. Ended up in the OSU ER and Hosp for another two weeks. After all the testing/biopsies etc it was determined that I have PF and NOT Sarc…They have no idea, after many, many blood tests, what is causing the inflammation and in fact as of three weeks ago I am getting worse. I am now going to Cleveland Clinic for testing and

interviews for a lung transplant. They have been in contact with me and gave me some hope, and told me to call my insurance concerning the cost of, lodging, transportation (I live more than one hr away from Cleveland), and post prescriptions. I did, the answers I received was – no – no – yes. That all being said or possibly repeated, I apologize if I repeated anything, I have some questions, especially after reading the e-mails concerning the Lung Center in PA.

Ø Is anyone familiar with the Cleveland Clinic? (I have been to the site and just see general info)

Ø Does anyone have any idea what a charter flight would cost? I can only imagine

Ø I see in PA they have places for people to stay before/after transplant – I am assuming Cleveland has that also.

Ø Is there anyone who has had to put in for medical retirement from the DoD? I am in the process of this as of three weeks ago. Very painful

Ø I am 60 therefore have to go the med retirement and then SS. Does medicare help w/transplants?

Of course I may not even make the list. I hope so.

Any suggestions, advice, help, ideas would be greatly appreciated. Ok now I am actually going to send this.....

Best Regards

ellen