Re: Got my appointment at The Jewish Hospital!

[Guest guest]

Joyce

From what I've read that you've written about your pulmonologist he is a

narrow minded, self centered and not so knowledgeable about PF

Pulmonologist who is more interested in himself being held up as a god

than in you getting the best possible medical care. You need to find

another upon your return from Jewish.

Now, let me tell you some things I base that on. Any pulmonologist who

would resent or oppose as he does you going to one of the IPF centers of

excellence for a second opinion is one to leave. I had an ear surgeon

years ago when I told him I wanted a second opinion, not only encourage

me, but leave some lasting thoughts-he said if you ever had a doctor

(especially proposing surgery) who objected to a second opinion, get

another doctor. My doctors have encouraged second opinions left and

right.

Second, he hasn't taken the time to educate you well at all, but just

tried to dictate his choices.

Third, he may turn out to be wrong is some aspects. Jewish probably has

better CT methods and protocol and may very well tell more than your

local pathologist who is not use to PF. Jewish will run huge batteries

of blood tests and may find other factors that shed light. For instance,

they may find an underlying autoimmune disease and, voila, have a better

fix on cause and treatment.

I can go on and on. But did he warn you about your birds? If not,

another issue. Even if you don't listen, he should warn. Your exercising

in all likelihood at less than acceptable saturations?

I'm glad you're getting to those who truly understand the disease. Take

copies of all medical records. Make notes of your history so you'll not

overlook anything. Things you don't connect at all may be quite

eye-opening to them when combined with other information. Don't hide

anything (including info on pets and hobbies and whatever). Take your

biopsy slides for them to look at and copies on disc (not just reports

actual film) of all your CT's for them to compare to.

Then when you get home, find a local pulmonologist who will appreciate

that you've been to Jewish and will work in cooperation and provide you

the care you need at home.

>

> 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

From what I've read that you've written about your pulmonologist he is a

narrow minded, self centered and not so knowledgeable about PF

Pulmonologist who is more interested in himself being held up as a god

than in you getting the best possible medical care. You need to find

another upon your return from Jewish.

Now, let me tell you some things I base that on. Any pulmonologist who

would resent or oppose as he does you going to one of the IPF centers of

excellence for a second opinion is one to leave. I had an ear surgeon

years ago when I told him I wanted a second opinion, not only encourage

me, but leave some lasting thoughts-he said if you ever had a doctor

(especially proposing surgery) who objected to a second opinion, get

another doctor. My doctors have encouraged second opinions left and

right.

Second, he hasn't taken the time to educate you well at all, but just

tried to dictate his choices.

Third, he may turn out to be wrong is some aspects. Jewish probably has

better CT methods and protocol and may very well tell more than your

local pathologist who is not use to PF. Jewish will run huge batteries

of blood tests and may find other factors that shed light. For instance,

they may find an underlying autoimmune disease and, voila, have a better

fix on cause and treatment.

I can go on and on. But did he warn you about your birds? If not,

another issue. Even if you don't listen, he should warn. Your exercising

in all likelihood at less than acceptable saturations?

I'm glad you're getting to those who truly understand the disease. Take

copies of all medical records. Make notes of your history so you'll not

overlook anything. Things you don't connect at all may be quite

eye-opening to them when combined with other information. Don't hide

anything (including info on pets and hobbies and whatever). Take your

biopsy slides for them to look at and copies on disc (not just reports

actual film) of all your CT's for them to compare to.

Then when you get home, find a local pulmonologist who will appreciate

that you've been to Jewish and will work in cooperation and provide you

the care you need at home.

>

> 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, I read the advice you were given about getting rid of your birds. I wrote about this to you before. My first dove was found by my daughter on the way home from school. We raised her on the kitchen counter in a cat carrier on top of a heating pad. We laughed about giving her a daily bath in our corning roasting pan. She flew around and roosted in the house plants, one of her favorite places was on the lamp shade on my sewing machine. I have a picture took after I had surgery of me on the sofa with the bird on my head. She was so young that the vet had to tell us what to mix up to feed her and how to tube feed her. She flew away one day and we were heart broken but when night came she flew home to roost, right in the patio door straight to the top of the refrigerator. She died from

having trouble laying an egg. We were heart broken and never would have gotten rid of her. Then our cat died of old age. All this time I was loving them, they were my beloved companions and the birds were killing me. Please love yourself enough to do what you need to do to stay alive and healthy. I just fed my cat, my hair got in the way, the tubing went into her food and water bowls and there is no way to keep it out of the sand box when I am scooping or changing it...that is absolutely unsanitary! and here I am sitting here unable to even write sensibly because my brain has been deprived of too much oxygen. I can spell the same word three different ways in one paragraph, I add letters in and have noticed that I am becoming dyslexic. I transpose letters and numbers and have to go very slowly. I get so afraid and lonely, one time we moved and at bedtime I wanted my daughter and all of the critters to get in bed so that our family could all be

together and safe...that is objectively just plane nuts. I went into a vet's office that had a pet grooming service where dogs were being washed. I came out of clean air into that and had my first asthma attack and yet was in denial that my pets were doing the same things to me in smaller doses. I am having a scrambled brain day and should go to bed, I'm short of breath and turned up the oxygen but I am still la la I'm usually fine in the morning or a day or so.

Margaret

To: Breathe-Support <Breathe-Support >Sent: Monday, February 2, 2009 8:25:10 AMSubject: Got my appointment at The Jewish Hospital!

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]

Yes, I understand, Margaret, but for me to lose my dogs would send me into utter dispair and I would end up killing myself. There is no way I will ever give up my dogs! Now as the years progress several of them will die naturally and I will not replace them but I will not give anyone up! This disease progresses slowly (I hope) and so my pets will die off naturally. I doubt I will have 5 dogs in 3 years...one of them is 14 or 15 today and one is 11 and one is 10. Then I have one that is 7 and one that is young..he is just 2 yrs old. But hopefully by the time this disease really devestates me most of them will have lovingly gone to heaven! Joyce

Got my appointment at The Jewish Hospital!

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]

Bruce, Jewish has all ready set me up to see the IPF Rheumatologist because I told them I had JRA when a kid. Also, I have shown a high titer twice for Lupus and I have shown a high titer for sclera derma. The titers are no longer there but I saw a Rheumatologist in Flagstaff who told me I had no arthritis nor lupus nor sclera derma because I had no symptoms present to justify the call. Also, Yes, I do exercise and my saturation in AQaufit went so low today I could not stand and had to go to the side of the pool. My instructor cam eover to see if I was ok...But I can't take my oxygen into the pool with me! However on land aerobics I test my O2 levels and only once in the hour did it hit 89 and usually hovered around 90 which is ok. I use my oxygen there and I hve it set up because of exercising.

I find I am not breathing thru my nose when I walk so am breathless at minimal exedrtion but when I walk around the house I don't seem to get enough air from my canubla. My oxgen level is low but not in the 80's usually but am very breathless. The problem with taking my O2 saturation is the minutes I stop my O2 jumps up! I only have problems with exertion.

My Pulmonologist was chagrined when I told him I was going to go to Jewish! He said he wanted to see the results because they are experts but he was a bit peeved that I made an appointment to go without consulting him. He also would not send them a personal letter and said they can just see his tests and that is that. When I saw him in the consulting room after our brief encounter he told me that they will simply tell me to get the cutting in my lungs biopsy because they won't be albe to determine the cause from the CT Scans. And, then he said I cannot take Prednisone which is correct but they will probably say I should take X. I don't tremember the name b ut it is chemo. But why didn't he try that himself? Why had he just been seeimg me to make sure I am ok??? All because I didn't take the VATS? I cannot get a new pulmonologist because he is the best in town. There are only two of them in the whole tricity area! I will ask who they recommend though. Maybe they recommend a doc in Phoenhix but that is a long way to go and if I gewt sicker I won't be able to make the journey.

I still don't understand what it means to have my CT show overlapping things. I just don't understand what that means! More then one cause????? Is that possible?

Anyway, I surelyh wish I could see someone else and no, he has said nothing about my birds. I told him I thought I had cidosis (Prrot fever) but he said I don't. So, he knows I have parrots. He has said nothing about them. Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

JoyceFrom what I've read that you've written about your pulmonologist he is anarrow minded, self centered and not so knowledgeable about PFPulmonologist who is more interested in himself being held up as a godthan in you getting the best possible medical care. You need to findanother upon your return from Jewish.Now, let me tell you some things I base that on. Any pulmonologist whowould resent or oppose as he does you going to one of the IPF centers ofexcellence for a second opinion is one to leave. I had an ear surgeonyears ago when I told him I wanted a second opinion, not only encourageme, but leave some lasting thoughts-he said if you ever had a doctor(especially proposing surgery) who objected to a second opinion, getanother doctor. My doctors have encouraged second opinions left andright.Second, he hasn't taken the time to educate you well at all, but justtried to dictate his choices.Third, he may turn out to be wrong is some aspects. Jewish probably hasbetter CT methods and protocol and may very well tell more than yourlocal pathologist who is not use to PF. Jewish will run huge batteriesof blood tests and may find other factors that shed light. For instance,they may find an underlying autoimmune disease and, voila, have a betterfix on cause and treatment.I can go on and on. But did he warn you about your birds? If not,another issue. Even if you don't listen, he should warn. Your exercisingin all likelihood at less than acceptable saturations?I'm glad you're getting to those who truly understand the disease. Takecopies of all medical records. Make notes of your history so you'll notoverlook anything. Things you don't connect at all may be quiteeye-opening to them when combined with other information. Don't hideanything (including info on pets and hobbies and whatever). Take yourbiopsy slides for them to look at and copies on disc (not just reportsactual film) of all your CT's for them to compare to.Then when you get home, find a local pulmonologist who will appreciatethat you've been to Jewish and will work in cooperation and provide youthe care you need at home.>> Telephone tag is over! I have my appointment at Jewish Hospital! It'sthe week of March 23rd. Actually it is just for 4 days and that isperfect! I will be out and gone on the 4th day at 10am! Now things areworking out for me! Have plenty of time to make arrangements and get setand am excited! My birthday is the 10th and maybe they will have somegreat news for me. My pulmodude says they won't be able to tell from myct scan what is causing my PF because the scan shows overlapping..Idon't understand what that means. He says they will just tell me to geta Vat. I don't understand why my pulmonologist isn't worried about thatsince he said during the broncoscopy I bled horribly that he had to stopand not get many samples. He said they had a hard time stopping thebleeding...I asked him if he knew why and he said NO HE DIDN"T.Nowshouldn't that be of some concern when telling me to get a biopsy thatyou cut into my side and into my lung????? Joyce Rudy AZ IPF 11-08>

[Guest guest]

Joyce

By overlapping I think he's indicating that your CT may show some signs

that are consistent with different forms. Again a higher resolution CT

taken differently might well give a better view. Or someone more

familiar with reading CT's related to PF than the radiologist who read

yours was.

You should not be doing the pool exercises without oxygen based on what

you're describing. Again, underoxygenation risks damage to you. Back to

your pulmonologist, I'm sorry there are only two and, if this one is the

best, I sure wouldn't want to go to the other. I'm still not following

you on the prednisone as you only indicated a problem with Advair in the

past? Did you also have one with prednisone once? Now, I'm not

suggesting prednisone is the answer. Just confused a bit. Well, I'm just

glad you're going to be seeing some knowledgeable medical professionals.

As to the high titer that would not necessarily indicate an issue but

combined with JRA as a kid sure would lead me to a detailed

rheumatalogical profile. It sure didn't take Jewish long to see the

appropriateness, but thats because they see the a connection so

frequently.

> >

> > 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]

Bruce, I cannot take prednisone for several reasons. First I am all ready 200 pounds and simply cannot gain more weight! Second, I am diabetic and my family physician is very afraid that large doses of prednisone for a long time will drive my sugar so high it could be dangerous and finally, I am schizophrenic and taking large doses for a long time can jeapordize the balance of meds that I am on that allow me to function. I simply cannot become psychotic again or psychotically depressed. I live alone and could become a danger to others or myself. I only see a psychiatrist for medication once every 3 months for 7 minutes and there is no way I can be seen more often or more frequently since there are also only two shrinks here too. I simply cannot be hospitalized because it would hurt me terribly and I have no one to care for my pets....I simply cannot take the chance.

I also found out today that I will have to fly without oxygen. There is nothing I can do about it. The air lines will not take my kind of oxygen or portable and I would have to buy one of the acceptable brands and they cost $5000. It would be the same if I drove. I also cannot afford to go on United which will give me oxygen for $150 each way. That is something I cannot afford since my insurance will not pay for it. My insurance wouldn't pay for a rental of acceptable portables even if I could find one here so I will have to go to Phoenix by shuttle without oxygen and get a wheel chair to cross the terminal and then fly and then get a wheel chair in Denver and take a cab to Holiday Inn where my oxygen will be waiting for me and a portable. It just will have to be that way. I won't move as much as I can. I will take a wheel chair and the cab ride will be fast....the air in the plane...well I am used to high altitude. I live over 5200 feet and have been to Flagstaff without oxygen which is 7200 feet. This would be even if I drove....It is dangerous but the only way it can be done.

Yes, It is interesting that Jewish caught on immediately to the fact that I had JRA. None of my doctors even asked me for a full history! They took the blood test to test for RA and it came back normal but with JRA you come back normal on the ANNA which they didn't know. However, I have no rash and I have no pain in my joints so I don't really think the JRA has come back. But I suppose it could have been an istigator. Thank you for explaining to me about the overlapping. Can someone have several causes for IPF?

I will be able to take my friends notebook with me...though she has scared me to death about the fact that it could be stolen out of my motel room. Now I am afraid to take it! I would not be able to see the posts from you guys..oh yes I could! I could go to Yahoo groups! I am just afraid that someone will steal it. I wonder if places like Holiday inn have insurance against theft in your room?

Joyce Rudy IPF 11-08

Re: Got my appointment at The Jewish Hospital!

JoyceBy overlapping I think he's indicating that your CT may show some signsthat are consistent with different forms. Again a higher resolution CTtaken differently might well give a better view. Or someone morefamiliar with reading CT's related to PF than the radiologist who readyours was.You should not be doing the pool exercises without oxygen based on whatyou're describing. Again, underoxygenation risks damage to you. Back toyour pulmonologist, I'm sorry there are only two and, if this one is thebest, I sure wouldn't want to go to the other. I'm still not followingyou on the prednisone as you only indicated a problem with Advair in thepast? Did you also have one with prednisone once? Now, I'm notsuggesting prednisone is the answer. Just confused a bit. Well, I'm justglad you're going to be seeing some knowledgeable medical professionals.As to the high titer that would not necessarily indicate an issue butcombined with JRA as a kid sure would lead me to a detailedrheumatalogical profile. It sure didn't take Jewish long to see theappropriateness, but thats because they see the a connection sofrequently.> >> > 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 thingsare> working out for me! Have plenty of time to make arrangements and getset> and am excited! My birthday is the 10th and maybe they will havesome> great news for me. My pulmodude says they won't be able to tell frommy> 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 toget> a Vat. I don't understand why my pulmonologist isn't worried aboutthat> since he said during the broncoscopy I bled horribly that he had tostop> 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 biopsythat> you cut into my side and into my lung????? Joyce Rudy AZ IPF 11-08> >>

[Guest guest]

Joyce,

I'm going to implore you one more time. Please do not fly without oxygen. Regardless of how you try to rationalize it, it's a truly terrible dangerous idea. Jan posted information to you regarding this from her experience as a former flight attendant. It's like playing russian roulette and it's unfair to the other passengers on the plane. Here's why:

If you become ill and very short of breath on the plane the flight crew will be forced to supply you with the existing O2 supplies that are there for everyone in case of an emergency on the plane. They could have to use that oxygen for you thereby putting the remaining passengers at risk in the event of an emergency.

You do not have to buy and portable concentrator. You can rent one for between two and four hundred dollars for the week. Please investigate this option to safeguard yourself and everyone else on that plane with you.

The situation would not be the same if you drove. If you have a vehicle capable of making the trip, you can bring whatever type of oxygen you use at home. Your O2 supplier will bring it to you and your insurance will pay for it. I do this all the time and Medicare does pay for my O2 supplies whether I'm home or away from home.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, February 3, 2009 8:15:22 PMSubject: Re: Re: Got my appointment at The Jewish Hospital!

Bruce, I cannot take prednisone for several reasons. First I am all ready 200 pounds and simply cannot gain more weight! Second, I am diabetic and my family physician is very afraid that large doses of prednisone for a long time will drive my sugar so high it could be dangerous and finally, I am schizophrenic and taking large doses for a long time can jeapordize the balance of meds that I am on that allow me to function. I simply cannot become psychotic again or psychotically depressed. I live alone and could become a danger to others or myself. I only see a psychiatrist for medication once every 3 months for 7 minutes and there is no way I can be seen more often or more frequently since there are also only two shrinks here too. I simply cannot be hospitalized because it would hurt me terribly and I have no one to care for my pets....I simply cannot take the chance.

I also found out today that I will have to fly without oxygen. There is nothing I can do about it. The air lines will not take my kind of oxygen or portable and I would have to buy one of the acceptable brands and they cost $5000. It would be the same if I drove. I also cannot afford to go on United which will give me oxygen for $150 each way. That is something I cannot afford since my insurance will not pay for it. My insurance wouldn't pay for a rental of acceptable portables even if I could find one here so I will have to go to Phoenix by shuttle without oxygen and get a wheel chair to cross the terminal and then fly and then get a wheel chair in Denver and take a cab to Holiday Inn where my oxygen will be waiting for me and a portable. It just will have to be that way. I won't move as much as I can. I will take a wheel chair and the cab ride will be fast....the air in the plane...well I am used to high altitude. I live over 5200 feet and have

been to Flagstaff without oxygen which is 7200 feet. This would be even if I drove....It is dangerous but the only way it can be done.

Yes, It is interesting that Jewish caught on immediately to the fact that I had JRA. None of my doctors even asked me for a full history! They took the blood test to test for RA and it came back normal but with JRA you come back normal on the ANNA which they didn't know. However, I have no rash and I have no pain in my joints so I don't really think the JRA has come back. But I suppose it could have been an istigator. Thank you for explaining to me about the overlapping. Can someone have several causes for IPF?

I will be able to take my friends notebook with me...though she has scared me to death about the fact that it could be stolen out of my motel room. Now I am afraid to take it! I would not be able to see the posts from you guys..oh yes I could! I could go to Yahoo groups! I am just afraid that someone will steal it. I wonder if places like Holiday inn have insurance against theft in your room?

Joyce Rudy IPF 11-08

Re: Got my appointment at The Jewish Hospital!

JoyceBy overlapping I think he's indicating that your CT may show some signsthat are consistent with different forms. Again a higher resolution CTtaken differently might well give a better view. Or someone morefamiliar with reading CT's related to PF than the radiologist who readyours was.You should not be doing the pool exercises without oxygen based on whatyou're describing. Again, underoxygenation risks damage to you. Back toyour pulmonologist, I'm sorry there are only two and, if this one is thebest, I sure wouldn't want to go to the other. I'm still not followingyou on the prednisone as you only indicated a problem with Advair in thepast? Did you also have one with prednisone once? Now, I'm notsuggesting prednisone is the answer. Just confused a bit. Well, I'm justglad you're going to be seeing some knowledgeable medical professionals.As to the high titer that would not

necessarily indicate an issue butcombined with JRA as a kid sure would lead me to a detailedrheumatalogical profile. It sure didn't take Jewish long to see theappropriateness, but thats because they see the a connection sofrequently.> >> > 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 thingsare> working out for me! Have plenty of time to make arrangements and getset> and am excited! My birthday is the 10th and maybe they will havesome> great news for me. My pulmodude says they won't be able to tell frommy> 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 toget> a Vat. I don't understand why my pulmonologist isn't worried aboutthat>

since he said during the broncoscopy I bled horribly that he had tostop> 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 biopsythat> you cut into my side and into my lung????? Joyce Rudy AZ IPF 11-08> >>

[Guest guest]

Beth...when you put it that way, I will take United and pay the extra $300 for their oxygen but I live in a small town and don't think that any other supplier has thse portable units for rent. My supplier only sells them. And, $400 for a week is more then $300 for the round trip.It's just that this trip is so expensive! With my room and the meals I will have to buy it's going to cost me over $1000! Money that I really don't h ave! And, the flight costs! And the boarding costs of my dog! It overwhelms me the cost. Now medicare will pay for the oxygen in my hotel room and the portable to use while there but they won't pay for a portable to take on the plane and use to get to Phoenix etc. Allcare told me this. I was appalled! You would think for medical appointments that they would pay but they do not. What ever happened to the disability laws??? I should contact the ACLU and see if they will take the case that not paying for the rental of oxygen on the way to your appointment and in the air makes you unable to afford proper medical care. I justm ight right that up and send it to them. I have not had much luck with the ACLU though. Each time I've written to them they have taken my case and done nothing. Joyce Rudy AZ IPF 11-08

Re: Got my appointment at The Jewish Hospital!

JoyceBy overlapping I think he's indicating that your CT may show some signsthat are consistent with different forms. Again a higher resolution CTtaken differently might well give a better view. Or someone morefamiliar with reading CT's related to PF than the radiologist who readyours was.You should not be doing the pool exercises without oxygen based on whatyou're describing. Again, underoxygenation risks damage to you. Back toyour pulmonologist, I'm sorry there are only two and, if this one is thebest, I sure wouldn't want to go to the other. I'm still not followingyou on the prednisone as you only indicated a problem with Advair in thepast? Did you also have one with prednisone once? Now, I'm notsuggesting prednisone is the answer. Just confused a bit. Well, I'm justglad you're going to be seeing some knowledgeable medical professionals.As to the high titer that would not necessarily indicate an issue butcombined with JRA as a kid sure would lead me to a detailedrheumatalogical profile. It sure didn't take Jewish long to see theappropriateness, but thats because they see the a connection sofrequently.> >> > 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 thingsare> working out for me! Have plenty of time to make arrangements and getset> and am excited! My birthday is the 10th and maybe they will havesome> great news for me. My pulmodude says they won't be able to tell frommy> 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 toget> a Vat. I don't understand why my pulmonologist isn't worried aboutthat> since he said during the broncoscopy I bled horribly that he had tostop> 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 biopsythat> you cut into my side and into my lung????? Joyce Rudy AZ IPF 11-08> >>

[Guest guest]

Joyce

There are companies you can rent from that will ship the units to you via UPS but it might be worth a few phone calls to other suppliers in your area to see what they have to borrow or rent. If you find a supplier that has more equipment options than your current supplier you might consider switching.

I share your low opinion of Apria though I know there are some that have good service from their local Apria affiliate. In general they have a greatly deserved terrible reputation.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, February 3, 2009 8:48:29 PMSubject: Re: Re: Got my appointment at The Jewish Hospital!

Beth...when you put it that way, I will take United and pay the extra $300 for their oxygen but I live in a small town and don't think that any other supplier has thse portable units for rent. My supplier only sells them. And, $400 for a week is more then $300 for the round trip.It's just that this trip is so expensive! With my room and the meals I will have to buy it's going to cost me over $1000! Money that I really don't h ave! And, the flight costs! And the boarding costs of my dog! It overwhelms me the cost. Now medicare will pay for the oxygen in my hotel room and the portable to use while there but they won't pay for a portable to take on the plane and use to get to Phoenix etc. Allcare told me this. I was appalled! You would think for medical appointments that they would pay but they do not. What ever happened to the disability laws??? I should contact the ACLU and see if they will take the case that not paying for the rental of

oxygen on the way to your appointment and in the air makes you unable to afford proper medical care. I justm ight right that up and send it to them. I have not had much luck with the ACLU though. Each time I've written to them they have taken my case and done nothing. Joyce Rudy AZ IPF 11-08

Re: Got my appointment at The Jewish Hospital!

JoyceBy overlapping I think he's indicating that your CT may show some signsthat are consistent with different forms. Again a higher resolution CTtaken differently might well give a better view. Or someone morefamiliar with reading CT's related to PF than the radiologist who readyours was.You should not be doing the pool exercises without oxygen based on whatyou're describing. Again, underoxygenation risks damage to you. Back toyour pulmonologist, I'm sorry there are only two and, if this one is thebest, I sure wouldn't want to go to the other. I'm still not followingyou on the prednisone as you only indicated a problem with Advair in thepast? Did you also have one with prednisone once? Now, I'm notsuggesting prednisone is the answer. Just confused a bit. Well, I'm justglad you're going to be seeing some knowledgeable medical professionals.As to the high titer that would not

necessarily indicate an issue butcombined with JRA as a kid sure would lead me to a detailedrheumatalogical profile. It sure didn't take Jewish long to see theappropriateness, but thats because they see the a connection sofrequently.> >> > 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 thingsare> working out for me! Have plenty of time to make arrangements and getset> and am excited! My birthday is the 10th and maybe they will havesome> great news for me. My pulmodude says they won't be able to tell frommy> 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 toget> a Vat. I don't understand why my pulmonologist isn't worried aboutthat>

since he said during the broncoscopy I bled horribly that he had tostop> 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 biopsythat> you cut into my side and into my lung????? Joyce Rudy AZ IPF 11-08> >>

[Guest guest]

Joyce

I have chosen not to take prednisone for similar reasons to many of

yours. However, I also have a form of disease and combination of

indicators which would say the odds are extremely against prednisone

helping me. If my form of the disease or other factors were different,

then my choice might well be.

You mention the history of mental illness which I have also and based on

that would strongly advise more than psychiatric medication checks as

you travel this path. My counselor is my life saver. A counselor who

knows you can detect changes before others and can also help you through

the rough battles ahead, the less than supportive friends, the choices

you face.

As to the flying, I don't know what airline you're flying but last I

looked there was only one major airline that would not accept a POC and

the vast majority of oxygen suppliers will loan one for a week. That was

a major question I asked before even selecting an oxygen supplier.

No hotel provides you insurance against items in the room unless it is

directly through negligence on their part, which you can prove.

Unfortunately, your ability to prove anything is slim in those

situations. Many have business centers you can use in the evening and

avoid lugging a laptop on the trip. Otherwise, a check of your own

homeowners insurance might provide something, but then there is the

deductible and the fact it isn't your laptop.

> > >

> > > 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

I have chosen not to take prednisone for similar reasons to many of

yours. However, I also have a form of disease and combination of

indicators which would say the odds are extremely against prednisone

helping me. If my form of the disease or other factors were different,

then my choice might well be.

You mention the history of mental illness which I have also and based on

that would strongly advise more than psychiatric medication checks as

you travel this path. My counselor is my life saver. A counselor who

knows you can detect changes before others and can also help you through

the rough battles ahead, the less than supportive friends, the choices

you face.

As to the flying, I don't know what airline you're flying but last I

looked there was only one major airline that would not accept a POC and

the vast majority of oxygen suppliers will loan one for a week. That was

a major question I asked before even selecting an oxygen supplier.

No hotel provides you insurance against items in the room unless it is

directly through negligence on their part, which you can prove.

Unfortunately, your ability to prove anything is slim in those

situations. Many have business centers you can use in the evening and

avoid lugging a laptop on the trip. Otherwise, a check of your own

homeowners insurance might provide something, but then there is the

deductible and the fact it isn't your laptop.

> > >

> > > 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

The fact that medicare won't pay additional for the POC is a separate

issue. However, most oxygen suppliers will still provide a loaner. Even

Apria has a few given enough notice, Lincare will loan them, my local

supplier will loan one. As MB said there are also many places that will

rent them and send them to you.

> > >

> > > 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

The fact that medicare won't pay additional for the POC is a separate

issue. However, most oxygen suppliers will still provide a loaner. Even

Apria has a few given enough notice, Lincare will loan them, my local

supplier will loan one. As MB said there are also many places that will

rent them and send them to you.

> > >

> > > 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

Yes, United is the one hold out even though the FAA has made it clear

that POC's are acceptable. Yes, with one battery they will last only a

couple of hours while not plugged in. However, they can be supplied with

multiple batteries.

Your pulmonologist has no idea what they will recommend. Certainly chemo

is not in the most common recommendations although it's possible. But

seeing what they uncover as far as autoimmune is a major part of their

potential recommendations. While prednisone is the most common

recommendation, sometimes with autoimmune there are other choices. Make

sure they fully understand your complete history including the sugar,

the mental illness, the JRA, and anything else. There is so much

interaction between all aspects of our health. I'm confident that Jewish

will listen to you and try to provide you the best information on which

to make choices they can. While I advise not letting them dictate, I

also advise to keep open to everything they say and communicate back and

forth.

> > > >

> > > > 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

Yes, United is the one hold out even though the FAA has made it clear

that POC's are acceptable. Yes, with one battery they will last only a

couple of hours while not plugged in. However, they can be supplied with

multiple batteries.

Your pulmonologist has no idea what they will recommend. Certainly chemo

is not in the most common recommendations although it's possible. But

seeing what they uncover as far as autoimmune is a major part of their

potential recommendations. While prednisone is the most common

recommendation, sometimes with autoimmune there are other choices. Make

sure they fully understand your complete history including the sugar,

the mental illness, the JRA, and anything else. There is so much

interaction between all aspects of our health. I'm confident that Jewish

will listen to you and try to provide you the best information on which

to make choices they can. While I advise not letting them dictate, I

also advise to keep open to everything they say and communicate back and

forth.

> > > >

> > > > 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]

We have Apria here and I'll enquire. I will not be4 using it to walk the terminals...just the air plane. I'll ask for a wheel chair in the terminals and my O2 without oxygen if I am at rest is 92 so I should be able to get thru the terminals ok in a wheel chair. But, I need oxygen on the plane....It still seems cheaper to use United and hav e them supply the oxygen for $300. Joyce Rudy

Re: Got my appointment at The Jewish Hospital!

joyce i rented the POC from my DME company and it was 300 with an extra battery.. I use Apria. still alot of money.. i know it was only good for me on the plane. Had to still use my other tanks and apria even delivered to the hotel room and when i needed a refill they delivered them.. patti, ipf'7'06, NJ> > > > >> > > > > 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 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 12/07

57 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]

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]

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

To: Breathe-Support Sent: 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 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

To: Breathe-Support Sent: 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]

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

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

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

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

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

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[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

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>