Re: Transplant Evaluation!

[Guest guest]

Spoke with doc and told me at 6 to 10 liters nasal canula does not effectively deliever O2. So this afternoon nose piece will come and we will see if that is more effective. I'll let you know.

Ronnie

To: Breathe-Support Sent: Saturday, July 25, 2009 10:19:44 PMSubject: Re: Transplant Evaluation!

RonnieWhen was your last echocardiogram and what was your pulmonary pressureon it? Now I ask still knowing that the accuracy of echocardiograms inmeasuring is limited. However, they are an excellent means ofestablishing a need for further study. The means of getting an accuratemeasure 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 towait> > for your> > > >>>>>>>> appointment and that you always have someone right thereto> > 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 howthey> > 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]

this is the conversation that i was responding with the "national transplant assistance fund"

you have to do your own fundraising, but then you can use those resources post transplant

check it out

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!> >>

[Guest guest]

Ronnie,

I've been wondering about that since I use 6-9 at home and I read about

high liter stuff and yet no one, Not even my o2 supplier had mentioned a

mask. It really makes me mad that I have to do their job for them!

Dyane Phoenix IPF 02

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

> > > > >>>>>>>> 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]

Hi Ronnie, I use 75 feet most of the time. I loose right at half a liter. If or when I used to go into the yard I used 100'.Thats where your oximeter and flow meter comes in. We can do so much more than some say or think we can't do. I get out of the house as soon as I get myself rested up from a road trip.. LOL my daughter calls and says "ROAD TRIP" Lordy we do have a good time. We are going over to St. Augustine for a little R & R.. lol I am a PRO at R & R.. Not sure when yet but probably will before long. SO just get yourself out and do whatever you can. Don't be afraid of this equipmentIt's just a thing that helps us stay busy.. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Dyane, If it was not for a doctor that was on call that explaied so well about mask vs canulla i would not know either. It makes a difference because today I have kept SpO2 in the 90's with no problems. I was also told to use shotest tube to deliver highest amount of O2. I refer to plastic tubing as my leash. The longer the tubing the less accurate of how many liters you are actually getting. Ronnie From: dyanebillings <dyane.billings (AT) ball-mcgraw (DOT) com>To: Breathe-Support Sent: Monday, July 27, 2009 11:09:17 AMSubject: Re: Transplant Evaluation! Ronnie,I've been wondering about that since I use 6-9 at home and I read abouthigh liter stuff and yet no one, Not even my o2 supplier had mentioned amask. It really makes me mad that I have to do their job for them!Dyane Phoenix IPF 02> > > > >>>>>>>>> > > > >>>>>>>> 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 seethe> > > doctor on> > > > >>>>>>>8/20.> > > > >>>>>>>>> > > > >>>>>>>> I didn't realize your insurance would choose thefacility> > > that you> > > > >>>>>>>have to> > > > >>>>>>>> go to. Is that because there is not a transplanthospital> > > 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 BehalfOf> > 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 foranything> > > 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 tovisit.> > They> > > are all> > > > >>>>>>>very> > > > >>>>>>>> concerned about your comfort, that you do not have to> wait> > > for your> > > > >>>>>>>> appointment and that you always have someone rightthere> to> > > help you> > > > >>>>>>>find> > > > >>>>>>>> whatever you may need ! Even the doctors take theirtime> > 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 Committeeon> > > 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]

Thanks, its on my list of things to ask about if I go to NJH. Am really

nervous about altitude but would assume they know to deal with it.

Shouldn't assume though should I LOL

Dyane Pheonix IPS 02

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

> > > > > >>>>>>>> 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]

Beth,

Thank you so much. That is another new one-Liter Meter. Glad to know this.. This group is so cool. Thanks to all of you

Ronnie

To: Breathe-Support Sent: Monday, July 27, 2009 6:03:11 PMSubject: Re: Re: Transplant Evaluation!

Ronnie,

You're correct in that you do lose some flow with increased lengths of tubing. Many of us have a "liter meter" that tells us the flow that is coming through.

I currently have 100 feet of tubing connecting me to my concentrator and I have to turn it up about half a liter to get the flow I would have with 50 feet of tubing.

Liter meters can be purchased for something in the $20 to $25 range. Here is one source:

http://www.tinashom ecare.com/ oxygen_liter_ meters.htm

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Ronnie Edmiston <ronnieedmiston@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, July 27, 2009 6:20:15 PMSubject: Re: Re: Transplant Evaluation!

Dyane,

If it was not for a doctor that was on call that explaied so well about mask vs canulla i would not know either. It makes a difference because today I have kept SpO2 in the 90's with no problems.. I was also told to use shotest tube to deliver highest amount of O2. I refer to plastic tubing as my leash. The longer the tubing the less accurate of how many liters you are actually getting.

Ronnie

From: dyanebillings <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Monday, July 27, 2009 11:09:17 AMSubject: Re: Transplant Evaluation!

Ronnie,I've been wondering about that since I use 6-9 at home and I read abouthigh liter stuff and yet no one, Not even my o2 supplier had mentioned amask. It really makes me mad that I have to do their job for them!Dyane Phoenix IPF 02> > > > >>>>>>>>> > > > >>>>>>>> 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 seethe> > > doctor on> > > > >>>>>>>8/20.> > > > >>>>>>>>> > > > >>>>>>>> I didn't realize your insurance would choose thefacility> > > that you> > > > >>>>>>>have to> > > > >>>>>>>> go to. Is that because there is not a transplanthospital> > > 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 BehalfOf> > 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 foranything> > > 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 tovisit.> > They> > > are all> > > > >>>>>>>very> > > > >>>>>>>> concerned about your comfort, that you do not have to> wait> > > for your> > > > >>>>>>>> appointment and that you always have someone rightthere> to> > > help you> > > > >>>>>>>find> > > > >>>>>>>> whatever you may need ! Even the doctors take theirtime> > 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 Committeeon> > > 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!> > > > >>>>>>>>> > > > >>>>>>>> > > > >>>>>>>> > > > >>>>>>> > > > >>>>>> > > > >>>>>> > > > >>>>> > > > >>> > > >> > >> >>