Re: Got my appointment at The Jewish Hospital!

[Guest guest]

Margaret/Joyce All

I do hate seeing you and others being jerked around in such a way by

oxygen providers. Medicare in no way dictates what they provide but pays

them a set amount to service your monthly needs. In fact, medicare will

approve POC's full time and there are some national companies trying to

talk patients into switching their oxygen to just that. Unfortunately,

thats generally a poor choice since POC's won't meet most patient needs

at all times or permanently.

Unfortunately, many oxygen providers are nothing more than commodity

retailers, renting you the minimum equipment they can get by with.

Meanwhile, other providers recognize that they are medical providers

with obligations to try to assist patients to the best of their

abilities. I feel fortunate to have such a provider.

> > > > > > >

> > > > > > > Telephone tag is over! I have my appointment at Jewish

> > Hospital!

> > > > > It's

> > > > > > the week of March 23rd. Actually it is just for 4 days

> and

> > that is

> > > > > > perfect! I will be out and gone on the 4th day at 10am!

> Now

> > things

> > > > > are

> > > > > > working out for me! Have plenty of time to make

> arrangements

> > and

> > > get

> > > > > set

> > > > > > and am excited! My birthday is the 10th and maybe they

> will

> > have

> > > > > some

> > > > > > great news for me. My pulmodude says they won't be able

> to

> > tell

> > > from

> > > > > my

> > > > > > ct scan what is causing my PF because the scan shows

> > > overlapping. .I

> > > > > > don't understand what that means. He says they will just

> > tell me

> > > to

> > > > > get

> > > > > > a Vat. I don't understand why my pulmonologist isn't

> worried

> > about

> > > > > that

> > > > > > since he said during the broncoscopy I bled horribly that

> he

> > had

> > > to

> > > > > stop

> > > > > > and not get many samples. He said they had a hard time

> > stopping

> > > the

> > > > > > bleeding...I asked him if he knew why and he said NO HE

> > DIDN " T.Now

> > > > > > shouldn't that be of some concern when telling me to get

> a

> > biopsy

> > > > > that

> > > > > > you cut into my side and into my lung????? Joyce Rudy AZ

> IPF

> > 11-08

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Margaret/Joyce All

I do hate seeing you and others being jerked around in such a way by

oxygen providers. Medicare in no way dictates what they provide but pays

them a set amount to service your monthly needs. In fact, medicare will

approve POC's full time and there are some national companies trying to

talk patients into switching their oxygen to just that. Unfortunately,

thats generally a poor choice since POC's won't meet most patient needs

at all times or permanently.

Unfortunately, many oxygen providers are nothing more than commodity

retailers, renting you the minimum equipment they can get by with.

Meanwhile, other providers recognize that they are medical providers

with obligations to try to assist patients to the best of their

abilities. I feel fortunate to have such a provider.

> > > > > > >

> > > > > > > Telephone tag is over! I have my appointment at Jewish

> > Hospital!

> > > > > It's

> > > > > > the week of March 23rd. Actually it is just for 4 days

> and

> > that is

> > > > > > perfect! I will be out and gone on the 4th day at 10am!

> Now

> > things

> > > > > are

> > > > > > working out for me! Have plenty of time to make

> arrangements

> > and

> > > get

> > > > > set

> > > > > > and am excited! My birthday is the 10th and maybe they

> will

> > have

> > > > > some

> > > > > > great news for me. My pulmodude says they won't be able

> to

> > tell

> > > from

> > > > > my

> > > > > > ct scan what is causing my PF because the scan shows

> > > overlapping. .I

> > > > > > don't understand what that means. He says they will just

> > tell me

> > > to

> > > > > get

> > > > > > a Vat. I don't understand why my pulmonologist isn't

> worried

> > about

> > > > > that

> > > > > > since he said during the broncoscopy I bled horribly that

> he

> > had

> > > to

> > > > > stop

> > > > > > and not get many samples. He said they had a hard time

> > stopping

> > > the

> > > > > > bleeding...I asked him if he knew why and he said NO HE

> > DIDN " T.Now

> > > > > > shouldn't that be of some concern when telling me to get

> a

> > biopsy

> > > > > that

> > > > > > you cut into my side and into my lung????? Joyce Rudy AZ

> IPF

> > 11-08

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

There is at least one travel organization that plans trips/vacations and provides both O2 and RTs while on the trip. I forget the name of the organization, but saw it in The Pulmonary Paper.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Re: Got my appointment at The Jewish Hospital!To: Breathe-Support Date: Thursday, February 5, 2009, 10:39 PM

I am so sorry Joyce. I was keeping my mouth closed because I found out that travel oxygen is not covered by medicare summer before last. I had a big uproar with my provider about it and my doctor's office offered to pay. That is when I bought my travel concentrator and put the alternator in my car... all for less than tank and cart rental for that one trip! I can afford to drive, take discounted water travel and stay in OK hotels when I need to go out for medical reasons but it is the back pack supply I still need to figure out. It would work if I had a travel companion who could help. Is there any possibility there is an organization that would have a free loaner? We have a local organization called ASSETS.Margaret

From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 5, 2009 5:14:12 PMSubject: Re: Re: Got my appointment at The Jewish Hospital!

Medicare will not pay for a portable for travel even if it is for medical purposes. I have medicare with supplemental blue cross but Blue Cross will only pay if medicare pays. They will pay for oxygen in Denver. So, I have decided to fly with United and use their air for an exta $150 each way and I won't use air on the shuttle to and from phoenix nor in the terminals. If I can use a wheel chair I should be all right because my 02 stays in th elow 90's when at rest. It only drops below 90 upon exertion so I should be all right. JoyceRudy

Re: Got my appointment at The Jewish Hospital!

Joyce R.,I don't know what your insurance might cover, but I have Apria also. When I went to Walt Disney World for a week in December, they took care of all my oxygen needs - for both the hotel and the air travel. They provided me with a portable unit AND an extra battery. I met with them the week before the trip to pick up the unit...at which time they showed me everything about operating it. When the Apria rep wasn't happy with the way that one of the batteries was charging, he rush ordered a new unit. Because of the timing, he had the new unit shipped overnight to his house for Saturday delivery, then met me halfway between his home and mine to give me the equipment (we were leaving the next day). All of this and I never even saw a bill!!! It was all taken care of by insurance... so check it out! You never know...and it never hurts to ask.Steve aka...Knip IPF 9/07 confirmed via VATS

12/0757 New Hampshire> > > > > >> > > > > > Telephone tag is over! I have my appointment at Jewish > Hospital!> > > > It's> > > > > the week of March 23rd. Actually it is just for 4 days

and > that is> > > > > perfect! I will be out and gone on the 4th day at 10am! Now > things> > > > are> > > > > working out for me! Have plenty of time to make arrangements > and> > get> > > > set> > > > > and am excited! My birthday is the 10th and maybe they will > have> > > > some> > > > > great news for me. My pulmodude says they won't be able to > tell> > from> > > > my> > > > > ct scan what is causing my PF because the scan shows> > overlapping. .I> > > > > don't understand what that means. He says they will just > tell me> > to> > > > get> > > > > a Vat. I don't understand why my pulmonologist isn't worried > about>

> > > that> > > > > since he said during the broncoscopy I bled horribly that he > had> > to> > > > stop> > > > > and not get many samples. He said they had a hard time > stopping> > the> > > > > bleeding...I asked him if he knew why and he said NO HE > DIDN"T.Now> > > > > shouldn't that be of some concern when telling me to get a > biopsy> > > > that> > > > > you cut into my side and into my lung????? Joyce Rudy AZ IPF > 11-08> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

There is at least one travel organization that plans trips/vacations and provides both O2 and RTs while on the trip. I forget the name of the organization, but saw it in The Pulmonary Paper.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Re: Got my appointment at The Jewish Hospital!To: Breathe-Support Date: Thursday, February 5, 2009, 10:39 PM

I am so sorry Joyce. I was keeping my mouth closed because I found out that travel oxygen is not covered by medicare summer before last. I had a big uproar with my provider about it and my doctor's office offered to pay. That is when I bought my travel concentrator and put the alternator in my car... all for less than tank and cart rental for that one trip! I can afford to drive, take discounted water travel and stay in OK hotels when I need to go out for medical reasons but it is the back pack supply I still need to figure out. It would work if I had a travel companion who could help. Is there any possibility there is an organization that would have a free loaner? We have a local organization called ASSETS.Margaret

From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 5, 2009 5:14:12 PMSubject: Re: Re: Got my appointment at The Jewish Hospital!

Medicare will not pay for a portable for travel even if it is for medical purposes. I have medicare with supplemental blue cross but Blue Cross will only pay if medicare pays. They will pay for oxygen in Denver. So, I have decided to fly with United and use their air for an exta $150 each way and I won't use air on the shuttle to and from phoenix nor in the terminals. If I can use a wheel chair I should be all right because my 02 stays in th elow 90's when at rest. It only drops below 90 upon exertion so I should be all right. JoyceRudy

Re: Got my appointment at The Jewish Hospital!

Joyce R.,I don't know what your insurance might cover, but I have Apria also. When I went to Walt Disney World for a week in December, they took care of all my oxygen needs - for both the hotel and the air travel. They provided me with a portable unit AND an extra battery. I met with them the week before the trip to pick up the unit...at which time they showed me everything about operating it. When the Apria rep wasn't happy with the way that one of the batteries was charging, he rush ordered a new unit. Because of the timing, he had the new unit shipped overnight to his house for Saturday delivery, then met me halfway between his home and mine to give me the equipment (we were leaving the next day). All of this and I never even saw a bill!!! It was all taken care of by insurance... so check it out! You never know...and it never hurts to ask.Steve aka...Knip IPF 9/07 confirmed via VATS

12/0757 New Hampshire> > > > > >> > > > > > Telephone tag is over! I have my appointment at Jewish > Hospital!> > > > It's> > > > > the week of March 23rd. Actually it is just for 4 days

and > that is> > > > > perfect! I will be out and gone on the 4th day at 10am! Now > things> > > > are> > > > > working out for me! Have plenty of time to make arrangements > and> > get> > > > set> > > > > and am excited! My birthday is the 10th and maybe they will > have> > > > some> > > > > great news for me. My pulmodude says they won't be able to > tell> > from> > > > my> > > > > ct scan what is causing my PF because the scan shows> > overlapping. .I> > > > > don't understand what that means. He says they will just > tell me> > to> > > > get> > > > > a Vat. I don't understand why my pulmonologist isn't worried > about>

> > > that> > > > > since he said during the broncoscopy I bled horribly that he > had> > to> > > > stop> > > > > and not get many samples. He said they had a hard time > stopping> > the> > > > > bleeding...I asked him if he knew why and he said NO HE > DIDN"T.Now> > > > > shouldn't that be of some concern when telling me to get a > biopsy> > > > that> > > > > you cut into my side and into my lung????? Joyce Rudy AZ IPF > 11-08> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

When i flew, it was before i was covered by medicare.

My local O2 provider, Lincare, did not have POC's on hand, They needed several weeks advance notice and then the POC came a day or 2 before the trip. Then there wasn't enough time to check the battery situation. Actually I didn't think about checking the batteries.

The second time it happened, a bad battery, i wrote a note and attached it to the POC and informed the company. Don't know what happened, since i haven't flown since last year and don't plan on flying while waiting for the transplant.

The POC had to come from another location.

Yes it was very stressful, ready to fly and wondering if the POC would arrive.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Re: Got my appointment at The Jewish Hospital!To: Breathe-Support Date: Thursday, February 5, 2009, 9:38 PM

Joyce,

I'm not sure who told you Medicare will not pay for a portable for travel. It's simply not true. I've used a portable concentrator and had it paid for by private insurance and I know others both here on the board and elsewhere that have had portables paid for my Medicare when they traveled by plane.

The problem arises when the provider does not have portables available. If you then try to obtain one from a different source Medicare is unlikely to pay for that. If your provider has portables available for the dates that you need it you will get one and it is covered by Medicare.

Medicare pays a flat fee for our oxygen needs regardless of how much we need or the device that supplies it to us. The best thing for us to do is choose a provider that has the widest variety of equipment and options. That allows us to choose the equipment that best meets our needs and that is covered by Medicare.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 5, 2009 9:14:12 PMSubject: Re: Re: Got my appointment at The Jewish Hospital!

Medicare will not pay for a portable for travel even if it is for medical purposes. I have medicare with supplemental blue cross but Blue Cross will only pay if medicare pays. They will pay for oxygen in Denver. So, I have decided to fly with United and use their air for an exta $150 each way and I won't use air on the shuttle to and from phoenix nor in the terminals. If I can use a wheel chair I should be all right because my 02 stays in th elow 90's when at rest. It only drops below 90 upon exertion so I should be all right. JoyceRudy

Re: Got my appointment at The Jewish Hospital!

Joyce R.,I don't know what your insurance might cover, but I have Apria also. When I went to Walt Disney World for a week in December, they took care of all my oxygen needs - for both the hotel and the air travel. They provided me with a portable unit AND an extra battery. I met with them the week before the trip to pick up the unit...at which time they showed me everything about operating it. When the Apria rep wasn't happy with the way that one of the batteries was charging, he rush ordered a new unit. Because of the timing, he had the new unit shipped overnight to his house for Saturday delivery, then met me halfway between his home and mine to give me the equipment (we were leaving the next day). All of this and I never even saw a bill!!! It was all taken care of by insurance... so check it out! You never know...and it never hurts to ask.Steve aka...Knip IPF 9/07 confirmed via VATS

12/0757 New Hampshire> > > > > >> > > > > > Telephone tag is over! I have my appointment at Jewish > Hospital!> > > > It's> > > > > the week of March 23rd. Actually it is just for 4 days

and > that is> > > > > perfect! I will be out and gone on the 4th day at 10am! Now > things> > > > are> > > > > working out for me! Have plenty of time to make arrangements > and> > get> > > > set> > > > > and am excited! My birthday is the 10th and maybe they will > have> > > > some> > > > > great news for me. My pulmodude says they won't be able to > tell> > from> > > > my> > > > > ct scan what is causing my PF because the scan shows> > overlapping. .I> > > > > don't understand what that means. He says they will just > tell me> > to> > > > get> > > > > a Vat. I don't understand why my pulmonologist isn't worried > about>

> > > that> > > > > since he said during the broncoscopy I bled horribly that he > had> > to> > > > stop> > > > > and not get many samples. He said they had a hard time > stopping> > the> > > > > bleeding...I asked him if he knew why and he said NO HE > DIDN"T.Now> > > > > shouldn't that be of some concern when telling me to get a > biopsy> > > > that> > > > > you cut into my side and into my lung????? Joyce Rudy AZ IPF > 11-08> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

I am really confused. My oxygen provider said they do not have portables for rent or travel but they have them that I can Buy for $5000. Now I have Allcare. There are a couple of other providers in town but Apria is not one that I do business with because they don't have liquid oxyen. Lincare and I had a falling out because they were such babies but if they had to POC's to travel with they would rent them I am sure. I couldn't pay the rental fee. And, the POC's that are available would not meet my needs. I would need more batteries then I could carry to just make it to Phoenix and the flight! I am totally confused. Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

MBMy provider (local provider) keeps four portables available just forthat purpose and loans them on a first come first serve basis to any oftheir customers, never with a fee.The Apria office in this keeps only two portables but again will loanthem on a scheduled basis. The nearest Lincare office keeps sixportables and loans them on the same basis.Good oxygen providers seek to help you in any way possible. My providerwill loan travel concentrators, will loan concentrators to liquid users,will loan travel reservoirs, will loan backup equipment for trips. Thefact there are over 200 oxygen providers in the metroplex does help butI interviewed carefully before selecting, asking just such questions asthose. Of course, I found the one I use because they were the one Gwynnewas using.> > > > > > >> > > > > > > Telephone tag is over! I have my appointment at Jewish> > Hospital!> > > > > It's> > > > > > the week of March 23rd. Actually it is just for 4 days> and> > that is> > > > > > perfect! I will be out and gone on the 4th day at 10am!> Now> > things> > > > > are> > > > > > working out for me! Have plenty of time to make> arrangements> > and> > > get> > > > > set> > > > > > and am excited! My birthday is the 10th and maybe they> will> > have> > > > > some> > > > > > great news for me. My pulmodude says they won't be able> to> > tell> > > from> > > > > my> > > > > > ct scan what is causing my PF because the scan shows> > > overlapping. .I> > > > > > don't understand what that means. He says they will just> > tell me> > > to> > > > > get> > > > > > a Vat. I don't understand why my pulmonologist isn't> worried> > about> > > > > that> > > > > > since he said during the broncoscopy I bled horribly that> he> > had> > > to> > > > > stop> > > > > > and not get many samples. He said they had a hard time> > stopping> > > the> > > > > > bleeding...I asked him if he knew why and he said NO HE> > DIDN"T.Now> > > > > > shouldn't that be of some concern when telling me to get> a> > biopsy> > > > > that> > > > > > you cut into my side and into my lung????? Joyce Rudy AZ> IPF> > 11-08> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Margaret, there is no local organization here that gives free loaners. There is no local organization here for anything to do with oxygen. I don't even think we have a support group. I will be fine. I have decided to go without air on the shuttle to and from the airport because as long as I am at rest my oxygen will remain in the 90's. I'll ask for a wheel chair at the terminals and that will keep me at rest too. I will take United and for $250 they will supply my air while on the planes. That is what I will have to do. Hopefully this will be the last trip I'll have to take! Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

Joyce R.,I don't know what your insurance might cover, but I have Apria also. When I went to Walt Disney World for a week in December, they took care of all my oxygen needs - for both the hotel and the air travel. They provided me with a portable unit AND an extra battery. I met with them the week before the trip to pick up the unit...at which time they showed me everything about operating it. When the Apria rep wasn't happy with the way that one of the batteries was charging, he rush ordered a new unit. Because of the timing, he had the new unit shipped overnight to his house for Saturday delivery, then met me halfway between his home and mine to give me the equipment (we were leaving the next day). All of this and I never even saw a bill!!! It was all taken care of by insurance... so check it out! You never know...and it never hurts to ask.Steve aka...Knip IPF 9/07 confirmed via VATS 12/0757 New Hampshire> > > > > >> > > > > > Telephone tag is over! I have my appointment at Jewish > Hospital!> > > > It's> > > > > the week of March 23rd. Actually it is just for 4 days and > that is> > > > > perfect! I will be out and gone on the 4th day at 10am! Now > things> > > > are> > > > > working out for me! Have plenty of time to make arrangements > and> > get> > > > set> > > > > and am excited! My birthday is the 10th and maybe they will > have> > > > some> > > > > great news for me. My pulmodude says they won't be able to > tell> > from> > > > my> > > > > ct scan what is causing my PF because the scan shows> > overlapping. .I> > > > > don't understand what that means. He says they will just > tell me> > to> > > > get> > > > > a Vat. I don't understand why my pulmonologist isn't worried > about> > > > that> > > > > since he said during the broncoscopy I bled horribly that he > had> > to> > > > stop> > > > > and not get many samples. He said they had a hard time > stopping> > the> > > > > bleeding...I asked him if he knew why and he said NO HE > DIDN"T.Now> > > > > shouldn't that be of some concern when telling me to get a > biopsy> > > > that> > > > > you cut into my side and into my lung????? Joyce Rudy AZ IPF > 11-08> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Beth- then my O2 provider doesn't have any POC's av ailable for travel. They told me Medicare wouldn't cover the cost. They will sell me one for $5000! I guess I have a bad provider and will look into this. The only other supplier of liquid oxygen that is in town is Lincare and we got into a squabble awhile back because they were such babies and taking so long to give me my oxygen. Do to the incompetence between Apria and lincare it took me over a month to get my prescribed liquid oxygen. I could have died before I got it! Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

Joyce R.,I don't know what your insurance might cover, but I have Apria also. When I went to Walt Disney World for a week in December, they took care of all my oxygen needs - for both the hotel and the air travel. They provided me with a portable unit AND an extra battery. I met with them the week before the trip to pick up the unit...at which time they showed me everything about operating it. When the Apria rep wasn't happy with the way that one of the batteries was charging, he rush ordered a new unit. Because of the timing, he had the new unit shipped overnight to his house for Saturday delivery, then met me halfway between his home and mine to give me the equipment (we were leaving the next day). All of this and I never even saw a bill!!! It was all taken care of by insurance... so check it out! You never know...and it never hurts to ask.Steve aka...Knip IPF 9/07 confirmed via VATS 12/0757 New Hampshire> > > > > >> > > > > > Telephone tag is over! I have my appointment at Jewish > Hospital!> > > > It's> > > > > the week of March 23rd. Actually it is just for 4 days and > that is> > > > > perfect! I will be out and gone on the 4th day at 10am! Now > things> > > > are> > > > > working out for me! Have plenty of time to make arrangements > and> > get> > > > set> > > > > and am excited! My birthday is the 10th and maybe they will > have> > > > some> > > > > great news for me. My pulmodude says they won't be able to > tell> > from> > > > my> > > > > ct scan what is causing my PF because the scan shows> > overlapping. .I> > > > > don't understand what that means. He says they will just > tell me> > to> > > > get> > > > > a Vat. I don't understand why my pulmonologist isn't worried > about> > > > that> > > > > since he said during the broncoscopy I bled horribly that he > had> > to> > > > stop> > > > > and not get many samples. He said they had a hard time > stopping> > the> > > > > bleeding...I asked him if he knew why and he said NO HE > DIDN"T.Now> > > > > shouldn't that be of some concern when telling me to get a > biopsy> > > > that> > > > > you cut into my side and into my lung????? Joyce Rudy AZ IPF > 11-08> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Rudy Joyce

It sounds like you make lots of assumptions about certain things without investigating first.

How do you know you couldn't afford to rent a POC from an O2 provider? You plan on paying the airline for the use of O2, i think you said $250.

Have you actually called the other O2 suppliers? We have a local supplier who will rent O2 equipment to people who are not their regular customers for a relatively reasonable fee. I looked into it last year, but don't remember specific details.

Perhaps you need to sit down with the Yellow Pages and make lots of calls. Maybe even visit a medical supply company.

My sense is that you are overwhelmed and maybe in a panic. Sometimes I get that way with this stupid disease and other things as well.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Re: Got my appointment at The Jewish Hospital!To: Breathe-Support Date: Friday, February 6, 2009, 5:54 PM

I am really confused. My oxygen provider said they do not have portables for rent or travel but they have them that I can Buy for $5000. Now I have Allcare. There are a couple of other providers in town but Apria is not one that I do business with because they don't have liquid oxyen. Lincare and I had a falling out because they were such babies but if they had to POC's to travel with they would rent them I am sure. I couldn't pay the rental fee. And, the POC's that are available would not meet my needs. I would need more batteries then I could carry to just make it to Phoenix and the flight! I am totally confused. Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

MBMy provider (local provider) keeps four portables available just forthat purpose and loans them on a first come first serve basis to any oftheir customers, never with a fee.The Apria office in this keeps only two portables but again will loanthem on a scheduled basis. The nearest Lincare office keeps sixportables and loans them on the same basis.Good oxygen providers seek to help you in any way possible. My providerwill loan travel concentrators, will loan concentrators to liquid users,will loan travel reservoirs, will loan backup equipment for trips. Thefact there are over 200 oxygen providers in the metroplex does help butI interviewed carefully before selecting, asking just such questions asthose. Of course, I found the one I use because they were the one Gwynnewas using.> > > > > > >> > > > > > > Telephone tag is over! I have my appointment at Jewish> > Hospital!> > > > > It's> > > > > > the week of March 23rd. Actually it is just for 4 days> and> > that is> > > > > > perfect! I will be out and gone on the 4th day at 10am!> Now> >

things> > > > > are> > > > > > working out for me! Have plenty of time to make> arrangements> > and> > > get> > > > > set> > > > > > and am excited! My birthday is the 10th and maybe they> will> > have> > > > > some> > > > > > great news for me. My pulmodude says they won't be able> to> > tell> > > from> > > > > my> > > > > > ct scan what is causing my PF because the scan shows> > > overlapping. .I> > > > > > don't understand what that means. He says they will just> > tell me> > > to> > > > > get> > > > > > a Vat. I don't understand why my pulmonologist isn't> worried> > about> > > >

> that> > > > > > since he said during the broncoscopy I bled horribly that> he> > had> > > to> > > > > stop> > > > > > and not get many samples. He said they had a hard time> > stopping> > > the> > > > > > bleeding...I asked him if he knew why and he said NO HE> > DIDN"T.Now> > > > > > shouldn't that be of some concern when telling me to get> a> > biopsy> > > > > that> > > > > > you cut into my side and into my lung????? Joyce Rudy AZ> IPF> > 11-08> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Joyce

Just use United's and have oxygen waiting for you but make sure you make

arrangements with the airline early and often and carry multiple copies

of your paperwork and prescription.

Sorry its so confusing. Some oxygen providers just are more helpful than

others. But them blaming it all on medicare is just not accurate.

> > > > > > > >

> > > > > > > > Telephone tag is over! I have my appointment at Jewish

> > > Hospital!

> > > > > > It's

> > > > > > > the week of March 23rd. Actually it is just for 4 days

> > and

> > > that is

> > > > > > > perfect! I will be out and gone on the 4th day at 10am!

> > Now

> > > things

> > > > > > are

> > > > > > > working out for me! Have plenty of time to make

> > arrangements

> > > and

> > > > get

> > > > > > set

> > > > > > > and am excited! My birthday is the 10th and maybe they

> > will

> > > have

> > > > > > some

> > > > > > > great news for me. My pulmodude says they won't be able

> > to

> > > tell

> > > > from

> > > > > > my

> > > > > > > ct scan what is causing my PF because the scan shows

> > > > overlapping. .I

> > > > > > > don't understand what that means. He says they will just

> > > tell me

> > > > to

> > > > > > get

> > > > > > > a Vat. I don't understand why my pulmonologist isn't

> > worried

> > > about

> > > > > > that

> > > > > > > since he said during the broncoscopy I bled horribly

that

> > he

> > > had

> > > > to

> > > > > > stop

> > > > > > > and not get many samples. He said they had a hard time

> > > stopping

> > > > the

> > > > > > > bleeding...I asked him if he knew why and he said NO HE

> > > DIDN " T.Now

> > > > > > > shouldn't that be of some concern when telling me to get

> > a

> > > biopsy

> > > > > > that

> > > > > > > you cut into my side and into my lung????? Joyce Rudy AZ

> > IPF

> > > 11-08

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Pink Joyce-Yes, I am a bit overwhelmed! I will make some calls but this is a small town. There are very few providers of )2 here. But, I will call and find out if they have the rentals. The problem is I would need many batteries and the more batteries the more expensive it is..but I will make some calls and check it out. I do think that I will be fine as long as I don't have to exert myself! I have a hard time even believing I have IPF! For so long I was short of breath and just accepted it as normal and I seemed to get along ok. It came as a shock to me when they wanted me on oxygen! I just figure I am fat-I am not out of shape though. Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

MBMy provider (local provider) keeps four portables available just forthat purpose and loans them on a first come first serve basis to any oftheir customers, never with a fee.The Apria office in this keeps only two portables but again will loanthem on a scheduled basis. The nearest Lincare office keeps sixportables and loans them on the same basis.Good oxygen providers seek to help you in any way possible. My providerwill loan travel concentrators, will loan concentrators to liquid users,will loan travel reservoirs, will loan backup equipment for trips. Thefact there are over 200 oxygen providers in the metroplex does help butI interviewed carefully before selecting, asking just such questions asthose. Of course, I found the one I use because they were the one Gwynnewas using.> > > > > > >> > > > > > > Telephone tag is over! I have my appointment at Jewish> > Hospital!> > > > > It's> > > > > > the week of March 23rd. Actually it is just for 4 days> and> > that is> > > > > > perfect! I will be out and gone on the 4th day at 10am!> Now> > things> > > > > are> > > > > > working out for me! Have plenty of time to make> arrangements> > and> > > get> > > > > set> > > > > > and am excited! My birthday is the 10th and maybe they> will> > have> > > > > some> > > > > > great news for me. My pulmodude says they won't be able> to> > tell> > > from> > > > > my> > > > > > ct scan what is causing my PF because the scan shows> > > overlapping. .I> > > > > > don't understand what that means. He says they will just> > tell me> > > to> > > > > get> > > > > > a Vat. I don't understand why my pulmonologist isn't> worried> > about> > > > > that> > > > > > since he said during the broncoscopy I bled horribly that> he> > had> > > to> > > > > stop> > > > > > and not get many samples. He said they had a hard time> > stopping> > > the> > > > > > bleeding...I asked him if he knew why and he said NO HE> > DIDN"T.Now> > > > > > shouldn't that be of some concern when telling me to get> a> > biopsy> > > > > that> > > > > > you cut into my side and into my lung????? Joyce Rudy AZ> IPF> > 11-08> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Thank you, Bruce. I will make sure I have prescription and paer work! This has been an eye opening challenge! Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

JoyceJust use United's and have oxygen waiting for you but make sure you makearrangements with the airline early and often and carry multiple copiesof your paperwork and prescription.Sorry its so confusing. Some oxygen providers just are more helpful thanothers. But them blaming it all on medicare is just not accurate.> > > > > > > >> > > > > > > > Telephone tag is over! I have my appointment at Jewish> > > Hospital!> > > > > > It's> > > > > > > the week of March 23rd. Actually it is just for 4 days> > and> > > that is> > > > > > > perfect! I will be out and gone on the 4th day at 10am!> > Now> > > things> > > > > > are> > > > > > > working out for me! Have plenty of time to make> > arrangements> > > and> > > > get> > > > > > set> > > > > > > and am excited! My birthday is the 10th and maybe they> > will> > > have> > > > > > some> > > > > > > great news for me. My pulmodude says they won't be able> > to> > > tell> > > > from> > > > > > my> > > > > > > ct scan what is causing my PF because the scan shows> > > > overlapping. .I> > > > > > > don't understand what that means. He says they will just> > > tell me> > > > to> > > > > > get> > > > > > > a Vat. I don't understand why my pulmonologist isn't> > worried> > > about> > > > > > that> > > > > > > since he said during the broncoscopy I bled horriblythat> > he> > > had> > > > to> > > > > > stop> > > > > > > and not get many samples. He said they had a hard time> > > stopping> > > > the> > > > > > > bleeding...I asked him if he knew why and he said NO HE> > > DIDN"T.Now> > > > > > > shouldn't that be of some concern when telling me to get> > a> > > biopsy> > > > > > that> > > > > > > you cut into my side and into my lung????? Joyce Rudy AZ> > IPF> > > 11-08> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Rudy Joyce

Sometimes I was able to find outlets to use in the airport to recharge the batteries. But they are hard to find.

At one airport, there was something like an outlet "kiosk". But everyone there was using them for their laptops and other techie stuff.

I should have been more assertive as soon as i got there and asked if I could use one to recharge the battery. After a while, someone did leave, so i was able to recharge the battery.

i have read about some planes that have outlets to recharge the battery, but have no experience with that. The battery can be recharged while in use.

Find out how much extra a third battery will cost. They might supply enough batteries to cover the flight, but what about the time waiting to board the plane, waiting for take-off, etc?

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

From: JOYCE RUDY <greycharlie@ q.com>Subject: Re: Re: Got my appointment at The Jewish Hospital!To: Breathe-Support@ yahoogroups. comDate: Friday, February 6, 2009, 5:54 PM

I am really confused. My oxygen provider said they do not have portables for rent or travel but they have them that I can Buy for $5000. Now I have Allcare. There are a couple of other providers in town but Apria is not one that I do business with because they don't have liquid oxyen. Lincare and I had a falling out because they were such babies but if they had to POC's to travel with they would rent them I am sure. I couldn't pay the rental fee. And, the POC's that are available would not meet my needs. I would need more batteries then I could carry to just make it to Phoenix and the flight! I am totally confused. Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

MBMy provider (local provider) keeps four portables available just forthat purpose and loans them on a first come first serve basis to any oftheir customers, never with a fee.The Apria office in this keeps only two portables but again will loanthem on a scheduled basis. The nearest Lincare office keeps sixportables and loans them on the same basis.Good oxygen providers seek to help you in any way possible. My providerwill loan travel concentrators, will loan concentrators to liquid users,will loan travel reservoirs, will loan backup equipment for trips. Thefact there are over 200 oxygen providers in the metroplex does help butI interviewed carefully before selecting, asking just such questions asthose. Of course, I found the one I use because they were the one Gwynnewas using.> > > > > > >> > > > > > > Telephone tag is over! I have my appointment at Jewish> > Hospital!> > > > > It's> > > > > > the week of March 23rd. Actually it is just for 4 days> and> > that is> > > > > > perfect! I will be out and gone on the 4th day at 10am!> Now> >

things> > > > > are> > > > > > working out for me! Have plenty of time to make> arrangements> > and> > > get> > > > > set> > > > > > and am excited! My birthday is the 10th and maybe they> will> > have> > > > > some> > > > > > great news for me. My pulmodude says they won't be able> to> > tell> > > from> > > > > my> > > > > > ct scan what is causing my PF because the scan shows> > > overlapping. .I> > > > > > don't understand what that means. He says they will just> > tell me> > > to> > > > > get> > > > > > a Vat. I don't understand why my pulmonologist isn't> worried> > about> > > >

> that> > > > > > since he said during the broncoscopy I bled horribly that> he> > had> > > to> > > > > stop> > > > > > and not get many samples. He said they had a hard time> > stopping> > > the> > > > > > bleeding...I asked him if he knew why and he said NO HE> > DIDN"T.Now> > > > > > shouldn't that be of some concern when telling me to get> a> > biopsy> > > > > that> > > > > > you cut into my side and into my lung????? Joyce Rudy AZ> IPF> > 11-08> > > > > > >> > > > > >> > > > >> > > >> > >>

>>

[Guest guest]

-Joyce(T&R)

I bought extra batteries when I was in Us for 360$online for my

Sequal Eclipse.

We can charge it as we use it and only some outlets in the plane

work for the POC, You have to inform the airlines in advance if you

wish to use yours.

This is my experience in the International airlines.

Geeta

-- In Breathe-Support , Joyce T Rosenberg

wrote:

>

> Rudy Joyce

> Sometimes I was able to find outlets to use in the airport to

recharge the batteries.  But they are hard to find.

> At one airport, there was something like an outlet " kiosk " .  But

everyone there was using them for their laptops and other techie

stuff. 

> I should have been more assertive as soon as i got there and asked

if I could use one to recharge the battery.  After a while, someone

did leave, so i was able to recharge the battery.

>  

> i have read about some planes that have outlets to recharge the

battery, but have no experience with that.  The battery can be

recharged while in use.

>  

> Find out how much extra a third battery will cost.  They might

supply enough batteries to cover the flight, but what about the time

waiting to board the plane, waiting for take-off, etc?

>  

>

>

>  

> Pink Joyce IPF 3/06  Pennsylvania

> Donate Life

>

>

>

> From: JOYCE RUDY

> Subject: Re: Re: Got my appointment at The

Jewish Hospital!

> To: Breathe-Support@ yahoogroups. com

> Date: Friday, February 6, 2009, 5:54 PM

>

>

>

>

>

>

> I am really confused. My oxygen provider said they do not have

portables for rent or travel but they have them that I can Buy for

$5000. Now I have Allcare. There are a couple of other providers in

town but Apria is not one that I do business with because they don't

have liquid oxyen. Lincare and I had a falling out because they were

such babies but if they had to POC's to travel with they would rent

them I am sure. I couldn't pay the rental fee. And, the POC's that

are available would not meet my needs. I would need more batteries

then I could carry to just make it to Phoenix and the flight! I am

totally confused. Joyce Rudy

>

> Re: Got my appointment at The Jewish

Hospital!

>

>

>

> MB

>

> My provider (local provider) keeps four portables available just

for

> that purpose and loans them on a first come first serve basis to

any of

> their customers, never with a fee.

>

> The Apria office in this keeps only two portables but again will

loan

> them on a scheduled basis. The nearest Lincare office keeps six

> portables and loans them on the same basis.

>

> Good oxygen providers seek to help you in any way possible. My

provider

> will loan travel concentrators, will loan concentrators to liquid

users,

> will loan travel reservoirs, will loan backup equipment for trips.

The

> fact there are over 200 oxygen providers in the metroplex does

help but

> I interviewed carefully before selecting, asking just such

questions as

> those. Of course, I found the one I use because they were the one

Gwynne

> was using.

>

>

> > > > > > > >

> > > > > > > > Telephone tag is over! I have my appointment at

Jewish

> > > Hospital!

> > > > > > It's

> > > > > > > the week of March 23rd. Actually it is just for 4 days

> > and

> > > that is

> > > > > > > perfect! I will be out and gone on the 4th day at 10am!

> > Now

> > > things

> > > > > > are

> > > > > > > working out for me! Have plenty of time to make

> > arrangements

> > > and

> > > > get

> > > > > > set

> > > > > > > and am excited! My birthday is the 10th and maybe they

> > will

> > > have

> > > > > > some

> > > > > > > great news for me. My pulmodude says they won't be able

> > to

> > > tell

> > > > from

> > > > > > my

> > > > > > > ct scan what is causing my PF because the scan shows

> > > > overlapping. .I

> > > > > > > don't understand what that means. He says they will

just

> > > tell me

> > > > to

> > > > > > get

> > > > > > > a Vat. I don't understand why my pulmonologist isn't

> > worried

> > > about

> > > > > > that

> > > > > > > since he said during the broncoscopy I bled horribly

that

> > he

> > > had

> > > > to

> > > > > > stop

> > > > > > > and not get many samples. He said they had a hard time

> > > stopping

> > > > the

> > > > > > > bleeding...I asked him if he knew why and he said NO HE

> > > DIDN " T.Now

> > > > > > > shouldn't that be of some concern when telling me to

get

> > a

> > > biopsy

> > > > > > that

> > > > > > > you cut into my side and into my lung????? Joyce Rudy

AZ

> > IPF

> > > 11-08

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>