Re: Transplant Evaluation!

[Guest guest]

On my blue Cross plan, any transplants must be do at one of the Mayo clinics of which there are 3 in my plan.

Just a little info

HP PH 5/06 60 TN

Subject: Re: Transplant Evaluation!To: Breathe-Support Date: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,> Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups. com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about

your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Dorothy, You'll really getting a

taste of Pennsylvania...the Lake Wallenpaupak is not that close to

Philadelphia..it's 2 hours away in the Appalachian mountains north west

of Phila.

It's a gorgeous area. Sesame place is fun...it's about 45 minutes from

center city where

the wedding is being held. That hotel is wonderful!!!

Being a Philadelphia..I figured that you might want to know

how far you might be traveling!

Enjoy my city and the side trips and enjoy your family time too.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Dorothy Reinecke wrote:

Joyce,

Thanks for the info - Since I was told about

possibly being a transplant candidate I have been trying to educate

myself. Did you know I found that Dr. who performed the

first single and double lung transplants is at the Univ. of Penn

hospital? That should be great for their program.

We are going to be kind of in your neck of the

woods this weekend. I am going to a wedding in Phil., PA this weekend

at Hyatt at Penns Landing - My daughter is driving from Boston with her

family and taking our 2 3/4 grand daughter and 8 month old to Sesame

Place on Friday. Then we are going to stay with friends at their home

near Lake Wallenpaupack for a couple of days.

It is so good getting to know all the people on

this forum,

Dorothy, Fayetteville, GA

UIP 7/05

From:

Breathe-Support [mailto:Breathe-Support ]

On Behalf Of Joyce T Rosenberg

Sent: Wednesday, July 15, 2009 12:57 PM

To: Breathe-Support

Subject: RE: Transplant Evaluation!

dorothy

the transplant eval process at U of Penn is 3 days

of outpatient testing and meetings

i have learned that there are other places that do the

evaluation as an inpatient

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

Pennsylvania

Donate Life

Listed 1/09 Inactive

4/09

www.transplantfund.org

From: Dorothy Reinecke <atlantadorothy (AT) att (DOT) net>

Subject: RE: Transplant Evaluation!

To: Breathe-Support

Date: Wednesday, July 15, 2009, 12:07 PM

Jan,

Congrats - you must be glad this portion is

complete. How long is the process? This is going to be my next step

after I see the doctor on 8/20.

I didn't realize your insurance would choose the

facility that you have to go to. Is that because there is not a

transplant hospital near you?

I will keep you in my prayers for approval by

the Committee.

Dorothy, Fayetteville, GA

UIP 7/05

From:

Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro

ups.com] On Behalf Of Jan

Sent: Wednesday, July 15, 2009 11:29 AM

To: Breathe-Support@ yahoogroups. com

Subject: Transplant Evaluation!

I have just completed (I think) testing for transplant

eligibility. ..it was very interesting and intense!

Due to my insurance we have to go to Dallas for anything related to

Transplant. We are patients of the Heart and Lung Transplant department

at UT Southwest. I can't say enough about every single employee at the

hospital and every specialist's office that we have had to visit. They

are all very concerned about your comfort, that you do not have to wait

for your appointment and that you always have someone right there to

help you find whatever you may need ! Even the doctors take their time

and visit with you until all your questions are answered. We are very

impressed. They are one of the Centers of Excellence, and we can sure

see how they got there!

Hopefully, my case will be presented to the Committee on Friday of this

week...if not then the next week. It has been fun...interesting and the

source of greater fatigue, just keeping up with the schedule...lol. ..

I hope you all have a great Wednesday today!

[Guest guest]

Just curious if you know. Do they provide payments for housing and

transportation? I ask because you start with the cost of living close

for an indefinite period of time and then you have at least six weeks

having to live near the hospital after. When you look at a couple

temporarily relocating like that, the costs of six months before and two

months after could easily be $15,000 or more. Then if the spouse works,

taking time off for the recovery and others taking time off to help.

Finances do often become a harsh reality even when the insurer or

Medicare and the insurer are paying 100%. On private insurance there is

generally a copay and the annual maximums are up significantly. Then you

have the meds. But, in addition to that you have full time care after

the transplant and you have proximity to the hospital to deal with. For

a single person, the cost just of custodial care after is sizable. I

estimated 6-8 weeks, 24 hour care (its required by UTSW), 7 days a week

could run from $12000 on the low end to $35000 on the upper end.

> >

> > Jan,

> > Congrats - you must be glad this portion is complete. How long is

the

> > process? This is going to be my next step after I see the doctor on

> 8/20.

> >

> > I didn't realize your insurance would choose the facility that you

> have to

> > go to. Is that because there is not a transplant hospital near you?

> >

> > I will keep you in my prayers for approval by the Committee.

> > Dorothy, Fayetteville, GA

> > UIP 7/05

> >

> > _____

> >

> > From: Breathe-Support@ yahoogroups. com

> > [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan

> > Sent: Wednesday, July 15, 2009 11:29 AM

> > To: Breathe-Support@ yahoogroups. com

> > Subject: Transplant Evaluation!

> >

> >

> >

> >

> >

> > I have just completed (I think) testing for transplant

> eligibility. ..it was

> > very interesting and intense!

> >

> > Due to my insurance we have to go to Dallas for anything related to

> > Transplant. We are patients of the Heart and Lung Transplant

> department at

> > UT Southwest. I can't say enough about every single employee at the

> hospital

> > and every specialist's office that we have had to visit. They are

all

> very

> > concerned about your comfort, that you do not have to wait for your

> > appointment and that you always have someone right there to help you

> find

> > whatever you may need ! Even the doctors take their time and visit

> with you

> > until all your questions are answered. We are very impressed. They

are

> one

> > of the Centers of Excellence, and we can sure see how they got

there!

> >

> > Hopefully, my case will be presented to the Committee on Friday of

> this

> > week...if not then the next week. It has been fun...interesting and

> the

> > source of greater fatigue, just keeping up with the schedule...lol.

...

> >

> > I hope you all have a great Wednesday today!

> >

>

[Guest guest]

Bruce &

Thanks so much for the replies - I am trying to keep a list of things to ask when I go back to the doctor in August. You are all a huge help-so many things to learn that only come with sharing experiences.

I thought trying to figure out O2 was complicated and I still don't have that perfect, but pretty good. Just wish the big night time concentrator didn't sound like an 18 wheeler in my bedroom.

Many thanks to all,

Dorothy, GA

UIP 7/05

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of linda arnoldSent: Wednesday, July 15, 2009 7:36 PMTo: Breathe-Support Subject: Re: Re: Transplant Evaluation!

On my blue Cross plan, any transplants must be do at one of the Mayo clinics of which there are 3 in my plan.

Just a little info

HP PH 5/06 60 TN

From: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Transplant Evaluation!To: Breathe-Support Date: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,> Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups. com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Bruce,

Believe it or not the policy I have thru Wal-Mart B/C covers All travel expenses,lodging, meals and transportation involved with a transplant. They have only the original 350.00 deductable. No co-pay and no cap. That is the only good part of my policy that you do not have to fight with. they have a complete dept that handles everything for you. This covers for a full year. why do you think I still work??

Subject: Re: Transplant Evaluation!To: Breathe-Support Date: Wednesday, July 15, 2009, 6:53 PM

Just curious if you know. Do they provide payments for housing andtransportation? I ask because you start with the cost of living closefor an indefinite period of time and then you have at least six weekshaving to live near the hospital after. When you look at a coupletemporarily relocating like that, the costs of six months before and twomonths after could easily be $15,000 or more. Then if the spouse works,taking time off for the recovery and others taking time off to help.Finances do often become a harsh reality even when the insurer orMedicare and the insurer are paying 100%. On private insurance there isgenerally a copay and the annual maximums are up significantly. Then youhave the meds. But, in addition to that you have full time care afterthe transplant and you have proximity to the hospital to deal with. Fora single person, the cost just of custodial care after is sizable.

Iestimated 6-8 weeks, 24 hour care (its required by UTSW), 7 days a weekcould run from $12000 on the low end to $35000 on the upper end.> >> > Jan,> > Congrats - you must be glad this portion is complete. How long isthe> > process? This is going to be my next step after I see the doctor on> 8/20.> >> > I didn't realize your insurance would choose the facility that you> have to> > go to. Is that because there is not a transplant hospital near you?> >> > I will keep you in my prayers for approval by the Committee.> > Dorothy, Fayetteville, GA> > UIP 7/05> >> > _____> >> > From: Breathe-Support@ yahoogroups. com> > [mailto:Breathe- Support@ yahoogroups. com] On Behalf Of Jan> > Sent: Wednesday, July 15, 2009 11:29 AM> > To: Breathe-Support@

yahoogroups. com> > Subject: Transplant Evaluation!> >> >> >> >> >> > I have just completed (I think) testing for transplant> eligibility. ..it was> > very interesting and intense!> >> > Due to my insurance we have to go to Dallas for anything related to> > Transplant. We are patients of the Heart and Lung Transplant> department at> > UT Southwest. I can't say enough about every single employee at the> hospital> > and every specialist's office that we have had to visit. They areall> very> > concerned about your comfort, that you do not have to wait for your> > appointment and that you always have someone right there to help you> find> > whatever you may need ! Even the doctors take their time and visit> with you> > until

all your questions are answered. We are very impressed. Theyare> one> > of the Centers of Excellence, and we can sure see how they gotthere!> >> > Hopefully, my case will be presented to the Committee on Friday of> this> > week...if not then the next week. It has been fun...interesting and> the> > source of greater fatigue, just keeping up with the schedule...lol...> >> > I hope you all have a great Wednesday today!> >>

[Guest guest]

,

That is amazing coverage! And yes I completely and totally get why you are still working. I would be very reluctant to give that up!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, July 15, 2009 9:19:20 PMSubject: Re: Re: Transplant Evaluation!

Bruce,

Believe it or not the policy I have thru Wal-Mart B/C covers All travel expenses,lodging, meals and transportation involved with a transplant. They have only the original 350.00 deductable. No co-pay and no cap. That is the only good part of my policy that you do not have to fight with. they have a complete dept that handles everything for you. This covers for a full year. why do you think I still work??

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 6:53 PM

Just curious if you know. Do they provide payments for housing andtransportation? I ask because you start with the cost of living closefor an indefinite period of time and then you have at least six weekshaving to live near the hospital after. When you look at a coupletemporarily relocating like that, the costs of six months before and twomonths after could easily be $15,000 or more. Then if the spouse works,taking time off for the recovery and others taking time off to help.Finances do often become a harsh reality even when the insurer orMedicare and the insurer are paying 100%. On private insurance there isgenerally a copay and the annual maximums are up significantly. Then youhave the meds. But, in addition to that you have full time care afterthe transplant and you have proximity to the hospital to deal with. Fora single person, the cost just of custodial care after is sizable.

Iestimated 6-8 weeks, 24 hour care (its required by UTSW), 7 days a weekcould run from $12000 on the low end to $35000 on the upper end.> >> > Jan,> > Congrats - you must be glad this portion is complete. How long isthe> > process? This is going to be my next step after I see the doctor on> 8/20.> >> > I didn't realize your insurance would choose the facility that you> have to> > go to. Is that because there is not a transplant hospital near you?> >> > I will keep you in my prayers for approval by the Committee.> > Dorothy, Fayetteville, GA> > UIP 7/05> >> > _____> >> > From: Breathe-Support@ yahoogroups. com> > [mailto:Breathe- Support@ yahoogroups. com] On Behalf Of Jan> > Sent: Wednesday, July 15, 2009 11:29 AM> > To: Breathe-Support@ yahoogroups. com> > Subject: Transplant Evaluation!> >> >>

>> >> >> > I have just completed (I think) testing for transplant> eligibility. ..it was> > very interesting and intense!> >> > Due to my insurance we have to go to Dallas for anything related to> > Transplant. We are patients of the Heart and Lung Transplant> department at> > UT Southwest. I can't say enough about every single employee at the> hospital> > and every specialist's office that we have had to visit. They areall> very> > concerned about your comfort, that you do not have to wait for your> > appointment and that you always have someone right there to help you> find> > whatever you may need ! Even the doctors take their time and visit> with you> > until all your questions are answered. We are very impressed. Theyare> one> > of the Centers of

Excellence, and we can sure see how they gotthere!> >> > Hopefully, my case will be presented to the Committee on Friday of> this> > week...if not then the next week. It has been fun...interesting and> the> > source of greater fatigue, just keeping up with the schedule...lol...> >> > I hope you all have a great Wednesday today!> >>

[Guest guest]

Dorothy

i live 5 minutes from Sesame Place

i drive past it at least once a week going from the indoor mall to the outdoor mall

in fact, when i first moved into Langhorne, i got a part time job at Sesame Place, but was newly diagnosed and didn't have the stamina for the job

if you go to Sesame Place with your daughter, i might be able to meet you for lunch on Friday -- there is a lot going on here -- we are going down the shore this weekend

how long will you be in this area?

i don't know where Lake Wallenpaupack is

have a wonderful time at the wedding -- enjoy the highlights of Philadelphia

the first lung transplant patient was a prisoner who volunteered in exchange for getting out of prison -- he didn't live long enough, but i don't remember how long he did live and i forget the year -- it was a relatively long time ago in the world of lung transplants

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: RE: Transplant Evaluation!To: Breathe-Support Date: Wednesday, July 15, 2009, 1:09 PM

Joyce,

Thanks for the info - Since I was told about possibly being a transplant candidate I have been trying to educate myself. Did you know I found that Dr. who performed the first single and double lung transplants is at the Univ. of Penn hospital? That should be great for their program.

We are going to be kind of in your neck of the woods this weekend. I am going to a wedding in Phil., PA this weekend at Hyatt at Penns Landing - My daughter is driving from Boston with her family and taking our 2 3/4 grand daughter and 8 month old to Sesame Place on Friday. Then we are going to stay with friends at their home near Lake Wallenpaupack for a couple of days.

It is so good getting to know all the people on this forum,

Dorothy, Fayetteville, GA

UIP 7/05

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of Joyce T RosenbergSent: Wednesday, July 15, 2009 12:57 PMTo: Breathe-Support@ yahoogroups. comSubject: RE: Transplant Evaluation!

dorothy

the transplant eval process at U of Penn is 3 days of outpatient testing and meetings

i have learned that there are other places that do the evaluation as an inpatient

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Dorothy Reinecke <atlantadorothy@ att.net>Subject: RE: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 12:07 PM

Jan,

Congrats - you must be glad this portion is complete. How long is the process? This is going to be my next step after I see the doctor on 8/20.

I didn't realize your insurance would choose the facility that you have to go to. Is that because there is not a transplant hospital near you?

I will keep you in my prayers for approval by the Committee.

Dorothy, Fayetteville, GA

UIP 7/05

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of JanSent: Wednesday, July 15, 2009 11:29 AMTo: Breathe-Support@ yahoogroups. comSubject: Transplant Evaluation!

I have just completed (I think) testing for transplant eligibility. ..it was very interesting and intense!Due to my insurance we have to go to Dallas for anything related to Transplant. We are patients of the Heart and Lung Transplant department at UT Southwest. I can't say enough about every single employee at the hospital and every specialist's office that we have had to visit. They are all very concerned about your comfort, that you do not have to wait for your appointment and that you always have someone right there to help you find whatever you may need ! Even the doctors take their time and visit with you until all your questions are answered. We are very impressed. They are one of the Centers of Excellence, and we can sure see how they got there!Hopefully, my case will be presented to the Committee on Friday of this week...if not then the next week. It has been fun...interesting and the source of greater fatigue, just keeping

up with the schedule...lol. ..I hope you all have a great Wednesday today!

[Guest guest]

Dorothy

put the concentrator in a different room

i keep mine in the dining room

the 50 foot tube enables me to go all over my house

also

the concentrator gives off a lot of heat and makes a small room very warm - great in the winter, but not in the summer

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: RE: Re: Transplant Evaluation!To: Breathe-Support Date: Wednesday, July 15, 2009, 7:58 PM

Bruce &

Thanks so much for the replies - I am trying to keep a list of things to ask when I go back to the doctor in August. You are all a huge help-so many things to learn that only come with sharing experiences.

I thought trying to figure out O2 was complicated and I still don't have that perfect, but pretty good. Just wish the big night time concentrator didn't sound like an 18 wheeler in my bedroom.

Many thanks to all,

Dorothy, GA

UIP 7/05

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of linda arnoldSent: Wednesday, July 15, 2009 7:36 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: Re: Transplant Evaluation!

On my blue Cross plan, any transplants must be do at one of the Mayo clinics of which there are 3 in my plan.

Just a little info

HP PH 5/06 60 TN

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,>

Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups. com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith

you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Joyce & Dorothy,

When Joe first got his CPAP machine for sleep apnea I adjusted to sleeping with a fighter pilot (his is full face) and some noise from the machine, also if he rolled over and faced my back I would get a shot of cold air on my neck. I learned to keep a small throw pillow between the mattress and headboard to stick behind my neck to avoid the cold air. Then about 2 weeks later the concentrator entered our bedroom and I actually enjoyed the "whish-phoo" sound and had no problems sleeping until summer arrived and I noticed the bedroom stayed so warm, it was then that I moved the concentrator to the dining room also, which is located outside our bedroom door. Just like Joyce, Joe has a 50 ft hose and can go from one end of the house to another. An angel took one of my AARP driver courses I teach and she had lost a daughter in law to a lung disease and told me to bring my husband to her house because she had some oxygen equipment in her basement for about 5 years and if he could use it it was all his. The equipment ended up being portable o2 tanks, carrying bag, and a concentrator. Joe took the concentrator to his oxygen provider and he checked it out and it was just fine, so Joe has a second concentrator in the garage/workshop also.

I also made our reservations for Chattanooga this morning, we will be there Fri/Sat...

        JOE/JOANIE

JOE 60 IPF1/2008 GRIFFIN, GA.

There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

-- Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]



Joe, Joanie & Joyce,

I knew experienced folks would have an answer for me - the noise machine will have a new home tonight,

Thanks much

Dorothy-GA

UIP-7/05

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joe & Joanie LamenskieSent: Thursday, July 16, 2009 9:23 AMTo: Breathe-Support Subject: RE: Re: Transplant Evaluation!

Joyce & Dorothy,

When Joe first got his CPAP machine for sleep apnea I adjusted to sleeping with a fighter pilot (his is full face) and some noise from the machine, also if he rolled over and faced my back I would get a shot of cold air on my neck. I learned to keep a small throw pillow between the mattress and headboard to stick behind my neck to avoid the cold air. Then about 2 weeks later the concentrator entered our bedroom and I actually enjoyed the "whish-phoo" sound and had no problems sleeping until summer arrived and I noticed the bedroom stayed so warm, it was then that I moved the concentrator to the dining room also, which is located outside our bedroom door. Just like Joyce, Joe has a 50 ft hose and can go from one end of the house to another. An angel took one of my AARP driver courses I teach and she had lost a daughter in law to a lung disease and told me to bring my husband to her house because she had some oxygen equipment in her basement for about 5 years and if he could use it it was all his. The equipment ended up being portable o2 tanks, carrying bag, and a concentrator. Joe took the concentrator to his oxygen provider and he checked it out and it was just fine, so Joe has a second concentrator in the garage/workshop also.

I also made our reservations for Chattanooga this morning, we will be there Fri/Sat...

        JOE/JOANIE

JOE 60 IPF1/2008 GRIFFIN, GA.

There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

-- Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

WOW, SORRY FOR THE LARGE PRINT....JOANIE

-- Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Joanie, I liked your new font, It is much easier to read than all caps, When you type in Caps it is really big.. loldon't ya love this techie stuff. lol Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. On Jul 16, 2009, at 10:14 AM, JOE & JOANIE LAMENSKIE wrote: WOW, SORRY FOR THE LARGE PRINT....JOANIE -- Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!> <imstp_animation_monkey_en_020908.gif>

[Guest guest]

Sher

While one talks about the appearance of the CPAP and the noise, I'd take

those any day over the partner not on a CPAP. I remember on the

before and after. Before she'd snore, she would flip her body and arms

and legs over many times, she'd make other sounds and was the most

active sleeper you've ever seen. After, she would sleep so peacefully

and barely move at all. Sleep Apnea generally keeps two people from

getting a good nights sleep.

> >

> > Jan,

> > Congrats - you must be glad this portion is

complete. How long is the

> > process? This is going to be my next step after

I see the doctor on

> 8/20.

> >

> > I didn't realize your insurance would choose the

facility that you

> have to

> > go to. Is that because there is not a transplant

hospital near you?

> >

> > I will keep you in my prayers for approval by

the Committee.

> > Dorothy, Fayetteville, GA

> > UIP 7/05

> >

> > _____

> >

> > From: Breathe-Support@ yahoogroups. com

> > [mailto:Breathe-Support@ yahoogroups. com] On

Behalf Of Jan

> > Sent: Wednesday, July 15, 2009 11:29 AM

> > To: Breathe-Support@ yahoogroups. com

> > Subject: Transplant

Evaluation!

> >

> >

> >

> >

> >

> > I have just completed (I think) testing for

transplant

> eligibility. ..it was

> > very interesting and intense!

> >

> > Due to my insurance we have to go to Dallas for

anything related to

> > Transplant. We are patients of the Heart and

Lung Transplant

> department at

> > UT Southwest. I can't say enough about every

single employee at the

> hospital

> > and every specialist's office that we have had

to visit. They are all

> very

> > concerned about your comfort, that you do not

have to wait for your

> > appointment and that you always have someone

right there to help you

> find

> > whatever you may need ! Even the doctors take

their time and visit

> with you

> > until all your questions are answered. We are

very impressed. They are

> one

> > of the Centers of Excellence, and we can sure

see how they got there!

> >

> > Hopefully, my case will be presented to the

Committee on Friday of

> this

> > week...if not then the next week. It has been

fun...interesting and

> the

> > source of greater fatigue, just keeping up with

the schedule...lol. ..

> >

> > I hope you all have a great Wednesday today!

> >

>

[Guest guest]

Bruce.... oh of course. Rich told me I snored something awful! There's something 'un-lady-like' for a woman to snore. lol.

He had to start sleeping in the other bedroom. That's about the time I got the cpap.

I was curious about my little concentrator and went to the net and couldn't find a thing. How strange. All I have is the name on the front; Visionaire. I got it from Lincare and will inquire when I talk to them next.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

TransplantEvaluation!> >> >> >> >> >> > I have just completed (I think) testing fortransplant> eligibility. ..it was> > very interesting and intense!> >> > Due to my insurance we have to go to Dallas foranything related to> > Transplant. We are patients of the Heart andLung Transplant> department at> > UT Southwest. I can't say enough about everysingle employee at the> hospital> > and every specialist's office that we have hadto visit. They are all> very> > concerned about your comfort, that you do nothave to wait for your> > appointment and that you always have someoneright there to help you> find> > whatever you may need ! Even the doctors taketheir time and visit> with you> > until all your questions are answered. We arevery impressed. They are> one> > of the Centers of Excellence, and we can suresee how they got there!> >> > Hopefully, my case will be presented to theCommittee on Friday of> this> > week...if not then the next week. It has beenfun...interesting and> the> > source of greater fatigue, just keeping up withthe schedule...lol. ..> >> > I hope you all have a great Wednesday today!> >>

[Guest guest]

I have an Invacare which also goes to 5 lpms. It is pretty noisy.I just got home and I talked to my realtor. He said some woman here in Blanchard wants to look at it. I don't know when but I hope that this is the one. I don't believe that my daughter can ever be of much help to me so I am undecided where I will move but I know that I can't keep up this house and I need the money from it.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,> Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups. com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Sher. Will Lincare give a different concentrator or did you buy yours?The person who wanted to look at my house must have changed her mind. Maybe she just wanted to look inside my house.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,> Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups. com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

I am new to support group and I am not sure if we have talked before. Did you do your evaluation in dallas or was that a messge from someone else in our group?. i will be going to dallas this wed to be evaluated.

Ronnie

To: Breathe-Support Sent: Friday, July 24, 2009 8:14:14 PMSubject: Re: Re: Transplant Evaluation!

Sher. Will Lincare give a different concentrator or did you buy yours?The person who wanted to look at my house must have changed her mind. Maybe she just wanted to look inside my house.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,>

Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups.. com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith

you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week.. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

BJ....Lincare furnished the concentrator. Do ask about it....

Sorry the buyer didn't buy!

Keep on keepin' on friend.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Ronnie,I'm not sure who you are talking to but the title hasn't been changed when the subject was changed. I am not eligible for a transplant I am too old. I live in Idaho and I plan on going to the University of Washington Medical Center for their IPF clinic. Good luck with your evaluation.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Transplant Evaluation!To: Breathe-Support@ yahoogroups. comDate: Wednesday, July 15, 2009, 11:16 AM

DorothyThe insurances choose for different reasons. Sometimes its because oftheir hospital contracts and, when so, thats troublesome as you may notbe able to choose the best or closest. In Jan's case, if I remembercorrectly, its a choice based on quality. Methodist Hospital in Houstonhad a period during which they considered them not to meet the standard.I do believe though that they have recovered or are on the way torecovery.JanIs there a chance down the road, you'll switch to Houston? I see theyare doing far more transplants than UTSW and while their success rate islower they are transplanting a much higher percentage of those waiting.>> Jan,>

Congrats - you must be glad this portion is complete. How long is the> process? This is going to be my next step after I see the doctor on8/20.>> I didn't realize your insurance would choose the facility that youhave to> go to. Is that because there is not a transplant hospital near you?>> I will keep you in my prayers for approval by the Committee.> Dorothy, Fayetteville, GA> UIP 7/05>> _____>> From: Breathe-Support@ yahoogroups. com> [mailto:Breathe-Support@ yahoogroups. com] On Behalf Of Jan> Sent: Wednesday, July 15, 2009 11:29 AM> To: Breathe-Support@ yahoogroups. . com> Subject: Transplant Evaluation!>>>>>> I have just completed (I think) testing for transplanteligibility. ..it was> very interesting and intense!>> Due to my insurance we have to go to Dallas for anything related to> Transplant. We are patients of the Heart and Lung Transplantdepartment at> UT Southwest. I can't say enough about every single employee at thehospital> and every specialist's office that we have had to visit. They are allvery> concerned about your comfort, that you do not have to wait for your> appointment and that you always have someone right there to help youfind> whatever you may need ! Even the doctors take their time and visitwith

you> until all your questions are answered. We are very impressed. They areone> of the Centers of Excellence, and we can sure see how they got there!>> Hopefully, my case will be presented to the Committee on Friday ofthis> week...if not then the next week.. It has been fun...interesting andthe> source of greater fatigue, just keeping up with the schedule...lol. ..>> I hope you all have a great Wednesday today!>

[Guest guest]

Ronnie

Going from 5 to 10 liters in two days could be normal progression but

sure sounds to me like something else going on. Do you have any other

new symptoms? Anyone you can see sooner than Wednesday? Do you have any

pulmonary hypertension? The expert in this region on it is Dr.

who is at the same location as Dr. Blewett.

I've seen Dr. Blewett on my one trip there just to get very preliminary

information 18 months or so ago. I'm not likely a transplant candidate.

> > >>>>>>>>

> > >>>>>>>> Jan,

> > >>>>>>>> Congrats - you must be glad this portion is complete. How

> long is the

> > >>>>>>>> process? This is going to be my next step after I see the

> doctor on

> > >>>>>>>8/20.

> > >>>>>>>>

> > >>>>>>>> I didn't realize your insurance would choose the facility

> that you

> > >>>>>>>have to

> > >>>>>>>> go to. Is that because there is not a transplant hospital

> near you?

> > >>>>>>>>

> > >>>>>>>> I will keep you in my prayers for approval by the

Committee.

> > >>>>>>>> Dorothy, Fayetteville, GA

> > >>>>>>>> UIP 7/05

> > >>>>>>>>

> > >>>>>>>> _____

> > >>>>>>>>

> > >>>>>>>> From: Breathe-Support@ yahoogroups. com

> > >>>>>>>> [mailto:Breathe- Support@ yahoogroups. com] On Behalf Of

Jan

> > >>>>>>>> Sent: Wednesday, July 15, 2009 11:29 AM

> > >>>>>>>> To: Breathe-Support@ yahoogroups. com

> > >>>>>>>> Subject: Transplant Evaluation!

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>>

> > >>>>>>>> I have just completed (I think) testing for transplant

> > >>>>>>>eligibility. ..it was

> > >>>>>>>> very interesting and intense!

> > >>>>>>>>

> > >>>>>>>> Due to my insurance we have to go to Dallas for anything

> related to

> > >>>>>>>> Transplant. We are patients of the Heart and Lung

Transplant

> > >>>>>>>department at

> > >>>>>>>> UT Southwest. I can't say enough about every single

employee

> at the

> > >>>>>>>hospital

> > >>>>>>>> and every specialist's office that we have had to visit.

They

> are all

> > >>>>>>>very

> > >>>>>>>> concerned about your comfort, that you do not have to wait

> for your

> > >>>>>>>> appointment and that you always have someone right there to

> help you

> > >>>>>>>find

> > >>>>>>>> whatever you may need ! Even the doctors take their time

and

> visit

> > >>>>>>>with you

> > >>>>>>>> until all your questions are answered. We are very

impressed.

> They are

> > >>>>>>>one

> > >>>>>>>> of the Centers of Excellence, and we can sure see how they

> got there!

> > >>>>>>>>

> > >>>>>>>> Hopefully, my case will be presented to the Committee on

> Friday of

> > >>>>>>>this

> > >>>>>>>> week...if not then the next week.. It has been

> fun...interesting and

> > >>>>>>>the

> > >>>>>>>> source of greater fatigue, just keeping up with the

> schedule...lol. ..

> > >>>>>>>>

> > >>>>>>>> I hope you all have a great Wednesday today!

> > >>>>>>>>

> > >>>>>>>

> > >>>>>>>

> > >>>>>>

> > >>>>>

> > >>>>>

> > >>>>

> > >>

> >

>

[Guest guest]

No, I have no new symptoms. How would pulmonary hypertension manifest itself?

ronnie

To: Breathe-Support Sent: Saturday, July 25, 2009 3:59:20 PMSubject: Re: Transplant Evaluation!

RonnieGoing from 5 to 10 liters in two days could be normal progression butsure sounds to me like something else going on. Do you have any othernew symptoms? Anyone you can see sooner than Wednesday? Do you have anypulmonary hypertension? The expert in this region on it is Dr. who is at the same location as Dr. Blewett.I've seen Dr. Blewett on my one trip there just to get very preliminaryinformation 18 months or so ago. I'm not likely a transplant candidate.> > >>>>>>>>> > >>>>>>>> Jan,> > >>>>>>>> Congrats - you must be glad this portion is complete. How> long is the> > >>>>>>>> process? This is going to be my next step after I see the> doctor on> >

>>>>>>>8/20.> > >>>>>>>>> > >>>>>>>> I didn't realize your insurance would choose the facility> that you> > >>>>>>>have to> > >>>>>>>> go to. Is that because there is not a transplant hospital> near you?> > >>>>>>>>> > >>>>>>>> I will keep you in my prayers for approval by theCommittee.> > >>>>>>>> Dorothy, Fayetteville, GA> > >>>>>>>> UIP 7/05> > >>>>>>>>> > >>>>>>>> _____> > >>>>>>>>> > >>>>>>>> From: Breathe-Support@ yahoogroups. com> > >>>>>>>> [mailto:Breathe- Support@

yahoogroups. com] On Behalf OfJan> > >>>>>>>> Sent: Wednesday, July 15, 2009 11:29 AM> > >>>>>>>> To: Breathe-Support@ yahoogroups. com> > >>>>>>>> Subject: Transplant Evaluation!> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>> I have just completed (I think) testing for transplant> > >>>>>>>eligibility. ..it was> > >>>>>>>> very interesting and intense!> > >>>>>>>>> > >>>>>>>> Due to my insurance we have to go to Dallas for anything> related to> >

>>>>>>>> Transplant. We are patients of the Heart and LungTransplant> > >>>>>>>department at> > >>>>>>>> UT Southwest. I can't say enough about every singleemployee> at the> > >>>>>>>hospital> > >>>>>>>> and every specialist's office that we have had to visit.They> are all> > >>>>>>>very> > >>>>>>>> concerned about your comfort, that you do not have to wait> for your> > >>>>>>>> appointment and that you always have someone right there to> help you> > >>>>>>>find> > >>>>>>>> whatever you may need ! Even the doctors take their timeand> visit> > >>>>>>>with

you> > >>>>>>>> until all your questions are answered. We are veryimpressed.> They are> > >>>>>>>one> > >>>>>>>> of the Centers of Excellence, and we can sure see how they> got there!> > >>>>>>>>> > >>>>>>>> Hopefully, my case will be presented to the Committee on> Friday of> > >>>>>>>this> > >>>>>>>> week...if not then the next week.. It has been> fun...interesting and> > >>>>>>>the> > >>>>>>>> source of greater fatigue, just keeping up with the> schedule...lol. ..> > >>>>>>>>> > >>>>>>>> I hope you all have a great Wednesday today!> >

>>>>>>>>> > >>>>>>>> > >>>>>>>> > >>>>>>> > >>>>>> > >>>>>> > >>>>> > >>> >>

[Guest guest]

Ronnie,

One of the ways PH could manifest is a sudden rapid increase in the need for supplemental O2. We've learned that the hard way here with various members. Going from 5 liters to 10 liters in just two days is extremely fast.

Since you're being evaluated for transplant this is one of the things they will test for. In the meantime take it easy and rest...don't push yourself!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, July 25, 2009 9:37:48 PMSubject: Re: Re: Transplant Evaluation!

No, I have no new symptoms. How would pulmonary hypertension manifest itself?

ronnie

From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, July 25, 2009 3:59:20 PMSubject: Re: Transplant Evaluation!

RonnieGoing from 5 to 10 liters in two days could be normal progression butsure sounds to me like something else going on. Do you have any othernew symptoms? Anyone you can see sooner than Wednesday? Do you have anypulmonary hypertension? The expert in this region on it is Dr. who is at the same location as Dr. Blewett.I've seen Dr. Blewett on my one trip there just to get very preliminaryinformation 18 months or so ago. I'm not likely a transplant candidate.> > >>>>>>>>> > >>>>>>>> Jan,> > >>>>>>>> Congrats - you must be glad this portion is complete. How> long is the> > >>>>>>>> process? This is going to be my next step after I see the> doctor on> >

>>>>>>>8/20.> > >>>>>>>>> > >>>>>>>> I didn't realize your insurance would choose the facility> that you> > >>>>>>>have to> > >>>>>>>> go to. Is that because there is not a transplant hospital> near you?> > >>>>>>>>> > >>>>>>>> I will keep you in my prayers for approval by theCommittee.> > >>>>>>>> Dorothy, Fayetteville, GA> > >>>>>>>> UIP 7/05> > >>>>>>>>> > >>>>>>>> _____> > >>>>>>>>> > >>>>>>>> From: Breathe-Support@ yahoogroups. com> > >>>>>>>> [mailto:Breathe- Support@

yahoogroups. com] On Behalf OfJan> > >>>>>>>> Sent: Wednesday, July 15, 2009 11:29 AM> > >>>>>>>> To: Breathe-Support@ yahoogroups. com> > >>>>>>>> Subject: Transplant Evaluation!> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>> I have just completed (I think) testing for transplant> > >>>>>>>eligibility. ..it was> > >>>>>>>> very interesting and intense!> > >>>>>>>>> > >>>>>>>> Due to my insurance we have to go to Dallas for anything> related to> >

>>>>>>>> Transplant. We are patients of the Heart and LungTransplant> > >>>>>>>department at> > >>>>>>>> UT Southwest. I can't say enough about every singleemployee> at the> > >>>>>>>hospital> > >>>>>>>> and every specialist's office that we have had to visit.They> are all> > >>>>>>>very> > >>>>>>>> concerned about your comfort, that you do not have to wait> for your> > >>>>>>>> appointment and that you always have someone right there to> help you> > >>>>>>>find> > >>>>>>>> whatever you may need ! Even the doctors take their timeand> visit> > >>>>>>>with

you> > >>>>>>>> until all your questions are answered. We are veryimpressed.> They are> > >>>>>>>one> > >>>>>>>> of the Centers of Excellence, and we can sure see how they> got there!> > >>>>>>>>> > >>>>>>>> Hopefully, my case will be presented to the Committee on> Friday of> > >>>>>>>this> > >>>>>>>> week...if not then the next week.. It has been> fun...interesting and> > >>>>>>>the> > >>>>>>>> source of greater fatigue, just keeping up with the> schedule...lol. ..> > >>>>>>>>> > >>>>>>>> I hope you all have a great Wednesday today!> >

>>>>>>>>> > >>>>>>>> > >>>>>>>> > >>>>>>> > >>>>>> > >>>>>> > >>>>> > >>> >>

[Guest guest]

MB & Ronnie, I was having chest pain upon laying down and bending sometimes just sitting my chest was uncomfortable. My Dr did a Echo because that is a symptom BUT it was the stupid reflux.. I am very careful to take my med everyday. Thats just me. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Ronnie, One of the ways PH could manifest is a sudden rapid increase in the need for supplemental O2. We've learned that the hard way here with various members. Going from 5 liters to 10 liters in just two days is extremely fast. Since you're being evaluated for transplant this is one of the things they will test for. In the meantime take it easy and rest...don't push yourself! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 From: Ronnie Edmiston <ronnieedmiston (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, July 25, 2009 9:37:48 PMSubject: Re: Re: Transplant Evaluation! No, I have no new symptoms. How would pulmonary hypertension manifest itself? ronnie From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, July 25, 2009 3:59:20 PMSubject: Re: Transplant Evaluation! RonnieGoing from 5 to 10 liters in two days could be normal progression butsure sounds to me like something else going on. Do you have any othernew symptoms? Anyone you can see sooner than Wednesday? Do you have anypulmonary hypertension? The expert in this region on it is Dr. who is at the same location as Dr. Blewett.I've seen Dr. Blewett on my one trip there just to get very preliminaryinformation 18 months or so ago. I'm not likely a transplant candidate.> > >>>>>>>>> > >>>>>>>> Jan,> > >>>>>>>> Congrats - you must be glad this portion is complete. How> long is the> > >>>>>>>> process? This is going to be my next step after I see the> doctor on> > >>>>>>>8/20.> > >>>>>>>>> > >>>>>>>> I didn't realize your insurance would choose the facility> that you> > >>>>>>>have to> > >>>>>>>> go to. Is that because there is not a transplant hospital> near you?> > >>>>>>>>> > >>>>>>>> I will keep you in my prayers for approval by theCommittee.> > >>>>>>>> Dorothy, Fayetteville, GA> > >>>>>>>> UIP 7/05> > >>>>>>>>> > >>>>>>>> _____> > >>>>>>>>> > >>>>>>>> From: Breathe-Support@ yahoogroups. com> > >>>>>>>> [mailto:Breathe- Support@ yahoogroups. com] On Behalf OfJan> > >>>>>>>> Sent: Wednesday, July 15, 2009 11:29 AM> > >>>>>>>> To: Breathe-Support@ yahoogroups. com> > >>>>>>>> Subject: Transplant Evaluation!> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>>> > >>>>>>>> I have just completed (I think) testing for transplant> > >>>>>>>eligibility. ..it was> > >>>>>>>> very interesting and intense!> > >>>>>>>>> > >>>>>>>> Due to my insurance we have to go to Dallas for anything> related to> > >>>>>>>> Transplant. We are patients of the Heart and LungTransplant> > >>>>>>>department at> > >>>>>>>> UT Southwest. I can't say enough about every singleemployee> at the> > >>>>>>>hospital> > >>>>>>>> and every specialist's office that we have had to visit.They> are all> > >>>>>>>very> > >>>>>>>> concerned about your comfort, that you do not have to wait> for your> > >>>>>>>> appointment and that you always have someone right there to> help you> > >>>>>>>find> > >>>>>>>> whatever you may need ! Even the doctors take their timeand> visit> > >>>>>>>with you> > >>>>>>>> until all your questions are answered. We are veryimpressed.> They are> > >>>>>>>one> > >>>>>>>> of the Centers of Excellence, and we can sure see how they> got there!> > >>>>>>>>> > >>>>>>>> Hopefully, my case will be presented to the Committee on> Friday of> > >>>>>>>this> > >>>>>>>> week...if not then the next week.. It has been> fun...interesting and> > >>>>>>>the> > >>>>>>>> source of greater fatigue, just keeping up with the> schedule...lol. ..> > >>>>>>>>> > >>>>>>>> I hope you all have a great Wednesday today!> > >>>>>>>>> > >>>>>>>> > >>>>>>>> > >>>>>>> > >>>>>> > >>>>>> > >>>>> > >>> >>

[Guest guest]

Ronnie

When was your last echocardiogram and what was your pulmonary pressure

on it? Now I ask still knowing that the accuracy of echocardiograms in

measuring is limited. However, they are an excellent means of

establishing a need for further study. The means of getting an accurate

measure is through a right heart catheter.

> > > >>>>>>>>

> > > >>>>>>>> Jan,

> > > >>>>>>>> Congrats - you must be glad this portion is complete. How

> > long is the

> > > >>>>>>>> process? This is going to be my next step after I see the

> > doctor on

> > > >>>>>>>8/20.

> > > >>>>>>>>

> > > >>>>>>>> I didn't realize your insurance would choose the facility

> > that you

> > > >>>>>>>have to

> > > >>>>>>>> go to. Is that because there is not a transplant hospital

> > near you?

> > > >>>>>>>>

> > > >>>>>>>> I will keep you in my prayers for approval by the

> Committee.

> > > >>>>>>>> Dorothy, Fayetteville, GA

> > > >>>>>>>> UIP 7/05

> > > >>>>>>>>

> > > >>>>>>>> _____

> > > >>>>>>>>

> > > >>>>>>>> From: Breathe-Support@ yahoogroups. com

> > > >>>>>>>> [mailto:Breathe- Support@ yahoogroups. com] On Behalf Of

> Jan

> > > >>>>>>>> Sent: Wednesday, July 15, 2009 11:29 AM

> > > >>>>>>>> To: Breathe-Support@ yahoogroups. com

> > > >>>>>>>> Subject: Transplant Evaluation!

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>>

> > > >>>>>>>> I have just completed (I think) testing for transplant

> > > >>>>>>>eligibility. ..it was

> > > >>>>>>>> very interesting and intense!

> > > >>>>>>>>

> > > >>>>>>>> Due to my insurance we have to go to Dallas for anything

> > related to

> > > >>>>>>>> Transplant. We are patients of the Heart and Lung

> Transplant

> > > >>>>>>>department at

> > > >>>>>>>> UT Southwest. I can't say enough about every single

> employee

> > at the

> > > >>>>>>>hospital

> > > >>>>>>>> and every specialist's office that we have had to visit.

> They

> > are all

> > > >>>>>>>very

> > > >>>>>>>> concerned about your comfort, that you do not have to

wait

> > for your

> > > >>>>>>>> appointment and that you always have someone right there

to

> > help you

> > > >>>>>>>find

> > > >>>>>>>> whatever you may need ! Even the doctors take their time

> and

> > visit

> > > >>>>>>>with you

> > > >>>>>>>> until all your questions are answered. We are very

> impressed.

> > They are

> > > >>>>>>>one

> > > >>>>>>>> of the Centers of Excellence, and we can sure see how

they

> > got there!

> > > >>>>>>>>

> > > >>>>>>>> Hopefully, my case will be presented to the Committee on

> > Friday of

> > > >>>>>>>this

> > > >>>>>>>> week...if not then the next week.. It has been

> > fun...interesting and

> > > >>>>>>>the

> > > >>>>>>>> source of greater fatigue, just keeping up with the

> > schedule...lol. ..

> > > >>>>>>>>

> > > >>>>>>>> I hope you all have a great Wednesday today!

> > > >>>>>>>>

> > > >>>>>>>

> > > >>>>>>>

> > > >>>>>>

> > > >>>>>

> > > >>>>>

> > > >>>>

> > > >>

> > >

> >

>

[Guest guest]

the transplant fund will help pay for a lot of those expenses if fundraising is done

the second day of my transplant eval, the social worker informed about fundraising at www.transplantfund.org

she said that it is better to fundraise before the transplant than after

people are more willing to donate prior to the transplant - per social worker

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Transplant Evaluation!To: Breathe-Support Date: Wednesday, July 15, 2009, 7:53 PM

Just curious if you know. Do they provide payments for housing andtransportation? I ask because you start with the cost of living closefor an indefinite period of time and then you have at least six weekshaving to live near the hospital after. When you look at a coupletemporarily relocating like that, the costs of six months before and twomonths after could easily be $15,000 or more. Then if the spouse works,taking time off for the recovery and others taking time off to help.Finances do often become a harsh reality even when the insurer orMedicare and the insurer are paying 100%. On private insurance there isgenerally a copay and the annual maximums are up significantly. Then youhave the meds. But, in addition to that you have full time care afterthe transplant and you have proximity to the hospital to deal with. Fora single person, the cost just of custodial care after is sizable.

Iestimated 6-8 weeks, 24 hour care (its required by UTSW), 7 days a weekcould run from $12000 on the low end to $35000 on the upper end.> >> > Jan,> > Congrats - you must be glad this portion is complete. How long isthe> > process? This is going to be my next step after I see the doctor on> 8/20.> >> > I didn't realize your insurance would choose the facility that you> have to> > go to. Is that because there is not a transplant hospital near you?> >> > I will keep you in my prayers for approval by the Committee.> > Dorothy, Fayetteville, GA> > UIP 7/05> >> > _____> >> > From: Breathe-Support@ yahoogroups. com> > [mailto:Breathe- Support@ yahoogroups. com] On Behalf Of Jan> > Sent: Wednesday, July 15, 2009 11:29 AM> > To: Breathe-Support@

yahoogroups. com> > Subject: Transplant Evaluation!> >> >> >> >> >> > I have just completed (I think) testing for transplant> eligibility. ..it was> > very interesting and intense!> >> > Due to my insurance we have to go to Dallas for anything related to> > Transplant. We are patients of the Heart and Lung Transplant> department at> > UT Southwest. I can't say enough about every single employee at the> hospital> > and every specialist's office that we have had to visit. They areall> very> > concerned about your comfort, that you do not have to wait for your> > appointment and that you always have someone right there to help you> find> > whatever you may need ! Even the doctors take their time and visit> with you> > until

all your questions are answered. We are very impressed. Theyare> one> > of the Centers of Excellence, and we can sure see how they gotthere!> >> > Hopefully, my case will be presented to the Committee on Friday of> this> > week...if not then the next week. It has been fun...interesting and> the> > source of greater fatigue, just keeping up with the schedule...lol...> >> > I hope you all have a great Wednesday today!> >>