Re: Stefani

[Guest guest]

Stefani

If the total bill from your oxygen supplier is more than $300 per month

then you're being overbilled. Simple. As to not getting detailed bills,

I would never pay something that I didn't get details on.

> > >

> > > What a roller coaster. Originally in 2006, I had a pulmonologist

tell

> > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that

leave?).

> > That was all he told me. Then I had Best Doctors in Boston tell me I

> > really needed more testing. I found our group and went to National

> > Jewish where I was told I " probably " had cellular NSIP. Only a

biopsy

> > would prove what I had. The local pathologist hit every possible

> > Pulmonary Fibrosis buzz word in his review of my slides you can

imagine.

> > Honeycombing, NSIP like with indications of UIP or IPF. So my

> > pulmonologist said he would send it to Denver for a reading there.

He

> > changed his mind and sent it to the Mayo Clinic and the pathologist

> > there, Tom Colby. Now I am told I have UIP and the prognosis is 3

> > years. Someone forgot to tell me... I have already outlived that

> > prognosis. Does that mean I am on borrowed time now? Bruce, do you

> > have any insight? My pulmonologist went on to say that none of the

> > clinical trials that he was aware of offered any drugs that he had

any

> > confidence in. He went on to tell me that prednisone was not an

option.

> > Go figure. I am now back at square one AGAIN. If I go in for another

> > biopsy, can I get another reading? LOL What a racket. And, insurance

> > doesn't pay squat on oxygen equipment. I am getting a little less

than

> > 50% of it paid for. At $600.00 a month, I am going to go broke in a

> > hurry. I guess it would be less expensive to just buy the equipment

and

> > leave it at that.

> > >

> > > Stefani

> > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II

2/2006,

> > Sleep Apnea 4/2009

> > >

> >

>

[Guest guest]

Beth -

I am so freaking frustrated I can hardly contain myself. I mean it isn't like I

just blindly forged ahead. When I met with my pulmo-dude here in Salt Lake, I

made it abundantly clear how I WANTED THINGS TO GO. I fought with him on an

HRCT scan. I had one done in March here in Salt Lake, and another in June in

Denver. He wanted yet another one in August. I provided him CDs that had both

of the HRCTs that had been done. He finally acquiesced, but grudgingly... he

didn't want to learn how to use the viewers that were provided on each CD. I

mean, isn't that the height of laziness? It just bothers me. I am forceful and

not quiet. What happens to patients that are not informed? Talk about a need

for reform. Not everyone has the resources that I have, or have a support

group, or family and friends that help them through this crap. My heart goes

out to all of those less fortunate than myself. I think this may be my calling.

The face to face group that I met with looks like they need some help. I ended

up being a featured speaker because of my purchase of the wrist bands and my

knowledge of HR 1079. They tried to tell me that IPF strikes only those over

55. We had a couple of people crying as they were still coming to grips with

this insidious disease. Everyone in the group was older (I was one of the

youngest). I am going to make this work for me, but I am just absolutely bowled

over with the incompetence on all levels.I also am almost to the point where I

am going to say I don't need any of the doctors except my GP at this point. I

have the oxygen, I have the CPAP, I am completing my rehab in the next two

months. I don't need any more negativism. I have PF. There is no cure. Live

your life to the best of your ability and call it good. LOL I just don't have a

certification.

Stefani

ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

> > > >

> > > > What a roller coaster. Originally in 2006, I had a pulmonologist

> tell

> > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that

> leave?).

> > > That was all he told me. Then I had Best Doctors in Boston tell me I

> > > really needed more testing. I found our group and went to National

> > > Jewish where I was told I " probably " had cellular NSIP. Only a

> biopsy

> > > would prove what I had. The local pathologist hit every possible

> > > Pulmonary Fibrosis buzz word in his review of my slides you can

> imagine.

> > > Honeycombing, NSIP like with indications of UIP or IPF. So my

> > > pulmonologist said he would send it to Denver for a reading there.

> He

> > > changed his mind and sent it to the Mayo Clinic and the pathologist

> > > there, Tom Colby. Now I am told I have UIP and the prognosis is 3

> > > years. Someone forgot to tell me... I have already outlived that

> > > prognosis. Does that mean I am on borrowed time now? Bruce, do you

> > > have any insight? My pulmonologist went on to say that none of the

> > > clinical trials that he was aware of offered any drugs that he had

> any

> > > confidence in. He went on to tell me that prednisone was not an

> option.

> > > Go figure. I am now back at square one AGAIN. If I go in for another

> > > biopsy, can I get another reading? LOL What a racket. And, insurance

> > > doesn't pay squat on oxygen equipment. I am getting a little less

> than

> > > 50% of it paid for. At $600.00 a month, I am going to go broke in a

> > > hurry. I guess it would be less expensive to just buy the equipment

> and

> > > leave it at that.

> > > >

> > > > Stefani

> > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II

> 2/2006,

> > > Sleep Apnea 4/2009

> > > >

> > >

> >

>

[Guest guest]

Stefani

I am totally with you I had a melt down with the Doc’s and all the Bull last week. My current plumo doc is a clown he changed my DX again and basically blew off my biopsy from UWMC and the two path reports. My o2 sats are dropping to the low 80’s I did a 100 feet walk in his office and they dropped to 88% and I am still not on o2. Told me that I should not have my own plus ox meter. I finally looked at him and said HEY my plate is kind of full already do you think you can save your line of BS for somebody else!!! I told him I was going to find a new doc and file a complaint and it went down hill from there. His nurse called me yesterday and said she knew I was upset and was there anything they could do?? I told yes as a matter of fact. Her that the doc needed to join

the support group and get up to speed on this disease before they killed somebody if they haven’t already.

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€>> Stefani> > If the total bill from your oxygen supplier is more than $300 per month> then you're being overbilled. Simple. As to not getting detailed bills,> I would never pay something that I didn't get details on.> > > > > >> > > > What a roller coaster. Originally in 2006, I had a pulmonologist> tell> > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that> leave?).> > > That was all he told me. Then I had Best Doctors in Boston tell me

I> > > really needed more testing. I found our group and went to National> > > Jewish where I was told I "probably" had cellular NSIP. Only a> biopsy> > > would prove what I had. The local pathologist hit every possible> > > Pulmonary Fibrosis buzz word in his review of my slides you can> imagine.> > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > pulmonologist said he would send it to Denver for a reading there.> He> > > changed his mind and sent it to the Mayo Clinic and the pathologist> > > there, Tom Colby. Now I am told I have UIP and the prognosis is 3> > > years. Someone forgot to tell me... I have already outlived that> > > prognosis. Does that mean I am on borrowed time now? Bruce, do you> > > have any insight? My pulmonologist went on to say that none of

the> > > clinical trials that he was aware of offered any drugs that he had> any> > > confidence in. He went on to tell me that prednisone was not an> option.> > > Go figure. I am now back at square one AGAIN. If I go in for another> > > biopsy, can I get another reading? LOL What a racket. And, insurance> > > doesn't pay squat on oxygen equipment. I am getting a little less> than> > > 50% of it paid for. At $600.00 a month, I am going to go broke in a> > > hurry. I guess it would be less expensive to just buy the equipment> and> > > leave it at that.> > > >> > > > Stefani> > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> 2/2006,> > > Sleep Apnea 4/2009> > > >> > >>

>>

[Guest guest]

Walt, Good Job. I think these cocky doctors that THNK they know everything need to be told off.My first clue would have been about your oximeter and Oh so much more bur you did a good job letting them know they couldindeed cause someone great harm. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Stefani I am totally with you I had a melt down with the Doc’s and all the Bull last week. My current plumo doc is a clown he changed my DX again and basically blew off my biopsy from UWMC and the two path reports. My o2 sats are dropping to the low 80’s I did a 100 feet walk in his office and they dropped to 88% and I am still not on o2. Told me that I should not have my own plus ox meter. I finally looked at him and said HEY my plate is kind of full already do you think you can save your line of BS for somebody else!!! I told him I was going to find a new doc and file a complaint and it went down hill from there. His nurse called me yesterday and said she knew I was upset and was there anything they could do?? I told yes as a matter of fact. Her that the doc needed to join the support group and get up to speed on this disease before they killed somebody if they haven’t already. Walt on Whidbey IPF,Nsip.Uip. 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: StefaniTo: Breathe-Support Date: Saturday, September 19, 2009, 9:23 AM Beth -I am so freaking frustrated I can hardly contain myself. I mean it isn't like I just blindly forged ahead. When I met with my pulmo-dude here in Salt Lake, I made it abundantly clear how I WANTED THINGS TO GO. I fought with him on an HRCT scan. I had one done in March here in Salt Lake, and another in June in Denver. He wanted yet another one in August. I provided him CDs that had both of the HRCTs that had been done. He finally acquiesced, but grudgingly.. . he didn't want to learn how to use the viewers that were provided on each CD. I mean, isn't that the height of laziness? It just bothers me. I am forceful and not quiet. What happens to patients that are not informed? Talk about a need for reform. Not everyone has the resources that I have, or have a support group, or family and friends that help them through this crap. My heart goes out to all of those less fortunate than myself. I think this may be my calling. The face to face group that I met with looks like they need some help. I ended up being a featured speaker because of my purchase of the wrist bands and my knowledge of HR 1079. They tried to tell me that IPF strikes only those over 55. We had a couple of people crying as they were still coming to grips with this insidious disease. Everyone in the group was older (I was one of the youngest). I am going to make this work for me, but I am just absolutely bowled over with the incompetence on all levels.I also am almost to the point where I am going to say I don't need any of the doctors except my GP at this point. I have the oxygen, I have the CPAP, I am completing my rehab in the next two months. I don't need any more negativism. I have PF. There is no cure. Live your life to the best of your ability and call it good. LOL I just don't have a certification.StefaniILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> > > >> > > > What a roller coaster. Originally in 2006, I had a pulmonologist> tell> > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that> leave?).> > > That was all he told me. Then I had Best Doctors in Boston tell me I> > > really needed more testing. I found our group and went to National> > > Jewish where I was told I "probably" had cellular NSIP. Only a> biopsy> > > would prove what I had. The local pathologist hit every possible> > > Pulmonary Fibrosis buzz word in his review of my slides you can> imagine.> > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > pulmonologist said he would send it to Denver for a reading there.> He> > > changed his mind and sent it to the Mayo Clinic and the pathologist> > > there, Tom Colby. Now I am told I have UIP and the prognosis is 3> > > years. Someone forgot to tell me... I have already outlived that> > > prognosis. Does that mean I am on borrowed time now? Bruce, do you> > > have any insight? My pulmonologist went on to say that none of the> > > clinical trials that he was aware of offered any drugs that he had> any> > > confidence in. He went on to tell me that prednisone was not an> option.> > > Go figure. I am now back at square one AGAIN. If I go in for another> > > biopsy, can I get another reading? LOL What a racket. And, insurance> > > doesn't pay squat on oxygen equipment. I am getting a little less> than> > > 50% of it paid for. At $600.00 a month, I am going to go broke in a> > > hurry. I guess it would be less expensive to just buy the equipment> and> > > leave it at that.> > > >> > > > Stefani> > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> 2/2006,> > > Sleep Apnea 4/2009> > > >> > >> >>

[Guest guest]

Walt/Stefani -It is really amazing that as we become more knowledgeable about this disease and empowered by our experiances including this group to watch us up and tell people we are not gonna just sit by and take what the idiots in the white coats say! I am no intellectual, just a country girl from BFE Wisconsin with a 2 year accounting degree. Ten years ago I had a hard time saying Boo to anyone(despite what my ex thinks) But I have learned and grown and felt the support from this group since I joined less than a year ago. I am proactive in my medical care now and that is bleeding over to my personal life. I do have trouble with stupidity of any kind. My youngest daughter and I discuss this a lot since apparently its not just me. Sigourney Weaver has a line from Aliens in which she is talking the the Company and she says "Did IQ's suddenly drop while I was away?" I really think they did. Otherwise why are we having to tell the 'Experts" what to do. Both you guys keep fighting for whats right!Sorry up on my high horse now, hard to get off LOL Dyane Phoenix ipf o2> > > > >> > > > > What a roller coaster. Originally in 2006, I had a pulmonologist> > tell> > > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that> > leave?).> > > > That was all he told me. Then I had Best Doctors in Boston tell me I> > > > really needed more testing. I found our group and went to National> > > > Jewish where I was told I "probably" had cellular NSIP. Only a> > biopsy> > > > would prove what I had. The local pathologist hit every possible> > > > Pulmonary Fibrosis buzz word in his review of my slides you can> > imagine.> > > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > > pulmonologist said he would send it to Denver for a reading there.> > He> > > > changed his mind and sent it to the Mayo Clinic and the pathologist> > > > there, Tom Colby. Now I am told I have UIP and the prognosis is 3> > > > years. Someone forgot to tell me... I have already outlived that> > > > prognosis. Does that mean I am on borrowed time now? Bruce, do you> > > > have any insight? My pulmonologist went on to say that none of the> > > > clinical trials that he was aware of offered any drugs that he had> > any> > > > confidence in. He went on to tell me that prednisone was not an> > option.> > > > Go figure. I am now back at square one AGAIN. If I go in for another> > > > biopsy, can I get another reading? LOL What a racket. And, insurance> > > > doesn't pay squat on oxygen equipment. I am getting a little less> > than> > > > 50% of it paid for. At $600.00 a month, I am going to go broke in a> > > > hurry. I guess it would be less expensive to just buy the equipment> > and> > > > leave it at that.> > > > >> > > > > Stefani> > > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> > 2/2006,> > > > Sleep Apnea 4/2009> > > > >> > > >> > >> >>

[Guest guest]

Walt,Can you have the UWMC be your primary care? Or get another appointment at the UWMC and do you 6-min walk there. They will put the order in for O2! C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Saturday, September 19, 2009 9:50:14 AMSubject: Re: Re: Stefani

Stefani

I am totally with you I had a melt down with the Doc’s and all the Bull last week. My current plumo doc is a clown he changed my DX again and basically blew off my biopsy from UWMC and the two path reports. My o2 sats are dropping to the low 80’s I did a 100 feet walk in his office and they dropped to 88% and I am still not on o2. Told me that I should not have my own plus ox meter. I finally looked at him and said HEY my plate is kind of full already do you think you can save your line of BS for somebody else!!! I told him I was going to find a new doc and file a complaint and it went down hill from there. His nurse called me yesterday and said she knew I was upset and was there anything they could do?? I told yes as a matter of fact. Her that the doc needed to join

the support group and get up to speed on this disease before they killed somebody if they haven’t already.

Walt on Whidbey IPF,Nsip.Uip. 06

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€>> Stefani> > If the total bill from your oxygen supplier is more than $300 per month> then you're being overbilled. Simple. As to not getting detailed bills,> I would never pay something that I didn't get details on.> > > > > >> > > > What a roller coaster. Originally in 2006, I had a pulmonologist> tell> > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that> leave?).> > > That was all he told me. Then I had Best Doctors in Boston tell me

I> > > really needed more testing. I found our group and went to National> > > Jewish where I was told I "probably" had cellular NSIP. Only a> biopsy> > > would prove what I had. The local pathologist hit every possible> > > Pulmonary Fibrosis buzz word in his review of my slides you can> imagine.> > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > pulmonologist said he would send it to Denver for a reading there.> He> > > changed his mind and sent it to the Mayo Clinic and the pathologist> > > there, Tom Colby. Now I am told I have UIP and the prognosis is 3> > > years. Someone forgot to tell me... I have already outlived that> > > prognosis. Does that mean I am on borrowed time now? Bruce, do you> > > have any insight? My pulmonologist went on to say that none of

the> > > clinical trials that he was aware of offered any drugs that he had> any> > > confidence in. He went on to tell me that prednisone was not an> option.> > > Go figure. I am now back at square one AGAIN. If I go in for another> > > biopsy, can I get another reading? LOL What a racket. And, insurance> > > doesn't pay squat on oxygen equipment. I am getting a little less> than> > > 50% of it paid for. At $600.00 a month, I am going to go broke in a> > > hurry. I guess it would be less expensive to just buy the equipment> and> > > leave it at that.> > > >> > > > Stefani> > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> 2/2006,> > > Sleep Apnea 4/2009> > > >> > >>

>>

[Guest guest]

Ride cowgirl Ride! C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Saturday, September 19, 2009 4:52:54 PMSubject: Re: Stefani

Walt/Stefani -It is really amazing that as we become more knowledgeable about this disease and empowered by our experiances including this group to watch us up and tell people we are not gonna just sit by and take what the idiots in the white coats say! I am no intellectual, just a country girl from BFE Wisconsin with a 2 year accounting degree. Ten years ago I had a hard time saying Boo to anyone(despite what my ex thinks) But I have learned and grown and felt the support from this group since I joined less than a year ago. I am proactive in my medical care now and that is bleeding over to my personal life. I do have trouble with stupidity of any kind. My youngest daughter and I discuss this a lot since apparently its not just me. Sigourney Weaver has a line from Aliens in which she is talking the the Company and she says "Did IQ's suddenly

drop while I was away?" I really think they did. Otherwise why are we having to tell the 'Experts" what to do. Both you guys keep fighting for whats right!Sorry up on my high horse now, hard to get off LOL Dyane Phoenix ipf o2> > > > >> > > > > What a roller coaster. Originally in 2006, I had a pulmonologist> >

tell> > > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that> > leave?).> > > > That was all he told me. Then I had Best Doctors in Boston tell me I> > > > really needed more testing. I found our group and went to National> > > > Jewish where I was told I "probably" had cellular NSIP. Only a> > biopsy> > > > would prove what I had. The local pathologist hit every possible> > > > Pulmonary Fibrosis buzz word in his review of my slides you can> > imagine.> > > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > > pulmonologist said he would send it to Denver for a reading there.> > He> > > > changed his mind and sent it to the Mayo Clinic and the pathologist> > > > there, Tom Colby. Now I am told I have UIP and the prognosis is

3> > > > years. Someone forgot to tell me... I have already outlived that> > > > prognosis. Does that mean I am on borrowed time now? Bruce, do you> > > > have any insight? My pulmonologist went on to say that none of the> > > > clinical trials that he was aware of offered any drugs that he had> > any> > > > confidence in. He went on to tell me that prednisone was not an> > option.> > > > Go figure. I am now back at square one AGAIN. If I go in for another> > > > biopsy, can I get another reading? LOL What a racket. And, insurance> > > > doesn't pay squat on oxygen equipment. I am getting a little less> > than> > > > 50% of it paid for. At $600.00 a month, I am going to go broke in a> > > > hurry. I guess it would be less expensive to just buy the equipment>

> and> > > > leave it at that.> > > > >> > > > > Stefani> > > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> > 2/2006,> > > > Sleep Apnea 4/2009> > > > >> > > >> > >> >>

[Guest guest]

,

how old are you? If you dont' mind me asking.

Dot/42/UIP10/08/San , Tx>> Stefani> > If the total bill from your oxygen supplier is more than $300 per month> then you're being overbilled. Simple. As to not getting detailed bills,> I would never pay something that I didn't get details on.> > > > > >> > > > What a roller coaster. Originally in 2006, I had a pulmonologist> tell> > > me I had ILD, but it wasn't COPD or Sarcoidosis (what does that> leave?).> > > That was all he told me. Then I had Best Doctors in Boston tell me

I> > > really needed more testing. I found our group and went to National> > > Jewish where I was told I "probably" had cellular NSIP. Only a> biopsy> > > would prove what I had. The local pathologist hit every possible> > > Pulmonary Fibrosis buzz word in his review of my slides you can> imagine.> > > Honeycombing, NSIP like with indications of UIP or IPF. So my> > > pulmonologist said he would send it to Denver for a reading there.> He> > > changed his mind and sent it to the Mayo Clinic and the pathologist> > > there, Tom Colby. Now I am told I have UIP and the prognosis is 3> > > years. Someone forgot to tell me... I have already outlived that> > > prognosis. Does that mean I am on borrowed time now? Bruce, do you> > > have any insight? My pulmonologist went on to say that none of

the> > > clinical trials that he was aware of offered any drugs that he had> any> > > confidence in. He went on to tell me that prednisone was not an> option.> > > Go figure. I am now back at square one AGAIN. If I go in for another> > > biopsy, can I get another reading? LOL What a racket. And, insurance> > > doesn't pay squat on oxygen equipment. I am getting a little less> than> > > 50% of it paid for. At $600.00 a month, I am going to go broke in a> > > hurry. I guess it would be less expensive to just buy the equipment> and> > > leave it at that.> > > >> > > > Stefani> > > > ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II> 2/2006,> > > Sleep Apnea 4/2009> > > >> > >>

>>