Re: Here we go again.... now I have UIP

September 18, 2009

Stefani,

Believe me we l know how confusing and overwhelming this is...even the doctors are confused. The language can be contradictory and conflicting. It's very hard to know what to believe and then what to do about any of it.

The first thing I want to kind of straigten out is the definition of ILD. That stands for interstitial lung disease. This lung disease affects the tissue and the space around the air sacs. ILD's are restrictive lung diseases. Among them are sarcoidosis, UIP, NSIP, HP, DIP etc. COPD is not an ILD. COPD is in an entirely different category of lung disease called obstructive lung disease. To really oversimplify things restrictive lung disease causes problems with inhaling and getting enough oxygen in. Obstructive lung disease causes problems with exhaling and getting carbon dioxide out. It is possible to have both.

About the "prognosis", you know we all have that cliche that we don't have an expiration date tatooed on us. It is a cliche but it is also true. There may not be much you can do medically. Right now there are no drugs, there are no real treatments. Occasionally someone with UIP will report that their situation is stablized by the use of predinsone or Imuran or Cellcept. These are all options to explore and perhaps consider. The other thing to do and what I HIGHLY recommend is to take the best care of yourself that you possibly can. Leanne and I were talking earlier about this. She calls it 'clean living'. Eating really well, getting plenty of rest, exercise regularly to your capacity and use your oxygen as needed to keep your sats up over 90. That alone will help keep your heart healthy.

My old insurance only paid 50% of my oxygen also. It was horrible and that's what prompted my siblings to purchase my self fill concentrator. Three years later I still use it overnight and it will fill tanks for me. I think it cost around $3000. That's less than 6 months of what you're paying now. Something like that might be worth considersing.

I'm sorry you are going through all this. It stinks in a big way. We're all in your corner, cheering you on!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, September 18, 2009 6:54:45 PMSubject: Here we go again.... now I have UIP

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.StefaniILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

September 18, 2009

Stefani

Have you returned to National Jewish or an IPF center since the biopsy?

I'm assuming Tom Colby is at Mayo in sdale? The issue is that I

would want the diagnosis firmed up by a center where the pulmonologist

and the pathologist have gotten together and consulted. That way they

can discuss the CT's and the biopsy and " argue " any atypical items. I

would not be willing to go just on the basis of your local pulmonologist

and I have no reason whatsoever to see Best Doctors as having PF

expertise. I'm assuming the biopsy you refer to was a VATS?

I'm a bit concerned as to why you were told prednisone wasn't an option

when there seems to be at least some chance that you may have NSIP. Is

there another reason I'm not aware of? I have a clearly defined

diagnosis of UIP and that is part of why I don't take prednisone but at

the very least your diagnosis is not definitive for UIP. Also a factor

would be how much alveolitis was noted as it would perhaps be responsive

to prednisone.

Ok, now on to the oxygen. Absolutely buying equipment in your situation

may make sense. $600 per month is absurd for oxygen however. The full

amount for both stationary and portable should be under $300 so your

portion certainly less than $200. If you're paying $600 per month you're

being taken real advantage of. Now, as to buying, you can buy an

excellent concentrator new for around $700 to solve part of your problem

or buy them refurbished for $400 or so or used for $200-250.

>

> 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

>

September 18, 2009

Bruce -

Tom Colby is the pathologist with the Mayo in Minnesota as one of my

pulmonologists is from Minnesota and has associates there. According to my

pulmo-dude, Colby is THE TOP PULMONARY FIBROSIS pathologist in the nation

currently. I am having my pulmo dude send the information on to my doctor at

National Jewish. My CTs showed ground glass, the biopsy showed a bit of

everything. I may indeed go back to National Jewish or consider going to

Minnesota (my family still lives in MN).

Oxygen, I already own a concentrator. This is what they are charging me for

rent of the tanks and the IFill machine. They charged me $85.00 for the cart to

hold my D and E tanks (which the insurance does NOT pay for, at all). Yeah, I

am in the process of checking all of those charges out.

Also, since we changed from Aetna to Blue Cross/Blue Shield, I am being forced

to give up my Hyzaar for Liprinosil. I have a few concerns as my doctor says

they will not let me keep the Hyzaar until I have used Liprinosil for AT LEAST

30 DAYS. I will never understand insurance companies. I have been on Hyzaar

since February of 2006. I have diabetes II, take glucophage, and simvastatin (I

had tolerance problems with the other statins). The Hyzaar seems to elevate

blood sugar levels, the liprinosil tends to lower blood sugar levels. I sit

around 90-120 on my blood sugar levels at this point in time, but fear with the

liprinosil I may have problems with too low a sugar level. My A1c tests have

been between 5.9 and 6.5 since August of 2006.

I will see if I can get the slides sent to National Jewish. It was my

understanding that they were going to be sent there and then my pulmo-dude

changed HIS mind.

Thanks Bruce,

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

> >

>

September 18, 2009

Beth: I am attempting to solve what has become a mysteryto me. I was DXed with IPF about a year ago. I know this to be a restrictive disease. My VA breathing tests show that I also have a restrictive disease. My local Pul. Dr. denies that I have both. My brother died with IPF. He also had asthma as some of my other siblings have. Prior to IPF I do not remember having asthma or allergies. This year I have developed all sorts of allergies. I fill up enough with allergies that I can feel weak and ill for a short time each day.

I work for four to six hours each day trying to clear my lungs. Some days the nurses at my rehab class tell my lungs are clear and this is my daily goal.

My question is: Can allergies alone be the cause of a restrictive disease in my lungs.

My oxygen level was probably 97 prior to IPF. One year later it is holding around 96.

Burns

To: Breathe-Support Sent: Friday, September 18, 2009 7:18:41 PMSubject: Re: Here we go again.... now I have UIP

Stefani,

Believe me we l know how confusing and overwhelming this is...even the doctors are confused. The language can be contradictory and conflicting. It's very hard to know what to believe and then what to do about any of it.

The first thing I want to kind of straigten out is the definition of ILD. That stands for interstitial lung disease. This lung disease affects the tissue and the space around the air sacs. ILD's are restrictive lung diseases. Among them are sarcoidosis, UIP, NSIP, HP, DIP etc. COPD is not an ILD. COPD is in an entirely different category of lung disease called obstructive lung disease. To really oversimplify things restrictive lung disease causes problems with inhaling and getting enough oxygen in. Obstructive lung disease causes problems with exhaling and getting carbon dioxide out. It is possible to have both.

About the "prognosis", you know we all have that cliche that we don't have an expiration date tatooed on us. It is a cliche but it is also true. There may not be much you can do medically. Right now there are no drugs, there are no real treatments. Occasionally someone with UIP will report that their situation is stablized by the use of predinsone or Imuran or Cellcept. These are all options to explore and perhaps consider. The other thing to do and what I HIGHLY recommend is to take the best care of yourself that you possibly can. Leanne and I were talking earlier about this. She calls it 'clean living'. Eating really well, getting plenty of rest, exercise regularly to your capacity and use your oxygen as needed to keep your sats up over 90. That alone will help keep your heart healthy.

My old insurance only paid 50% of my oxygen also. It was horrible and that's what prompted my siblings to purchase my self fill concentrator. Three years later I still use it overnight and it will fill tanks for me. I think it cost around $3000. That's less than 6 months of what you're paying now. Something like that might be worth considersing.

I'm sorry you are going through all this. It stinks in a big way. We're all in your corner, cheering you on!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Stefani <sfshaner (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 6:54:45 PMSubject: Here we go again.... now I have UIP

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.StefaniILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

September 18, 2009

,

Yes theoretically an extreme type of allergic reaction can cause restrictive lung disease. In that case it is called Hypersensitivity Pneumomitis not IPF. This is not a typical run of the mill allergy though. It's a situation where there is usually long term exposure to something that is extremely irritating and toxic (something like mold or bird dander and droppings) to the lungs and causes the bodies immune system to hyper respond with tremendous inflammation and scarring. It's not the kind of allergic reaction where there is sneezing, runny nose or a productive phlegmy cough.

Obviously it's impossible to say exactly what your situation is. Where are you located? I understand you get your medical care through the VA system? At which VA hospital do you receive your care? I only ask because the VA hospital here in Durham NC is across the street from Duke and I know there is sharing of resources and expertise. Maybe there is something similar in your area?

I'm wondering why your physician does not think you have restrictive lung disease. On what is he basing his opinion? I'm sorry to read about your brother's death from IPF. Does your doctor know about your family history? Asthma is typically an obstructive lung disease, not restrictive. However as we all know here it is not rare to have both kinds of lung disease at the same time.

Honestly it does not sound like anyone has been able to give you a conherent diagnosis. Would it be possible for you to be evaluated at one of the hospitals listed here: www.ipfnet.org? I'm so sorry that you are going through this. If there is anything I can do to help, please let me know! You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, September 18, 2009 9:42:29 PMSubject: Re: Here we go again.... now I have UIP

Beth: I am attempting to solve what has become a mysteryto me. I was DXed with IPF about a year ago. I know this to be a restrictive disease. My VA breathing tests show that I also have a restrictive disease. My local Pul. Dr. denies that I have both. My brother died with IPF. He also had asthma as some of my other siblings have. Prior to IPF I do not remember having asthma or allergies. This year I have developed all sorts of allergies. I fill up enough with allergies that I can feel weak and ill for a short time each day.

I work for four to six hours each day trying to clear my lungs. Some days the nurses at my rehab class tell my lungs are clear and this is my daily goal.

My question is: Can allergies alone be the cause of a restrictive disease in my lungs.

My oxygen level was probably 97 prior to IPF. One year later it is holding around 96.

Burns

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 7:18:41 PMSubject: Re: Here we go again.... now I have UIP

Stefani,

Believe me we l know how confusing and overwhelming this is...even the doctors are confused. The language can be contradictory and conflicting. It's very hard to know what to believe and then what to do about any of it.

The first thing I want to kind of straigten out is the definition of ILD. That stands for interstitial lung disease. This lung disease affects the tissue and the space around the air sacs. ILD's are restrictive lung diseases. Among them are sarcoidosis, UIP, NSIP, HP, DIP etc. COPD is not an ILD. COPD is in an entirely different category of lung disease called obstructive lung disease. To really oversimplify things restrictive lung disease causes problems with inhaling and getting enough oxygen in. Obstructive lung disease causes problems with exhaling and getting carbon dioxide out. It is possible to have both.

About the "prognosis", you know we all have that cliche that we don't have an expiration date tatooed on us. It is a cliche but it is also true. There may not be much you can do medically. Right now there are no drugs, there are no real treatments. Occasionally someone with UIP will report that their situation is stablized by the use of predinsone or Imuran or Cellcept. These are all options to explore and perhaps consider. The other thing to do and what I HIGHLY recommend is to take the best care of yourself that you possibly can. Leanne and I were talking earlier about this. She calls it 'clean living'. Eating really well, getting plenty of rest, exercise regularly to your capacity and use your oxygen as needed to keep your sats up over 90. That alone will help keep your heart healthy.

My old insurance only paid 50% of my oxygen also. It was horrible and that's what prompted my siblings to purchase my self fill concentrator. Three years later I still use it overnight and it will fill tanks for me. I think it cost around $3000. That's less than 6 months of what you're paying now. Something like that might be worth considersing.

I'm sorry you are going through all this. It stinks in a big way. We're all in your corner, cheering you on!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Stefani <sfshaner (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 6:54:45 PMSubject: Here we go again.... now I have UIP

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.StefaniILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

September 18, 2009

Beth:

I am in Holland, MI. My Holland Pul Dr feels I do not have a restrictive disease. I am on my first alergie shots given by a Holland Dr. He said it would probably be a long time before I benefit from shots.

My VA Pul Dr is in Ann Arbor near U of M. He feels I should be on prednisone. I am now on 20 mg per day and my local PD put me on 60 MG with one years refills in the beginning. A Cleveland Clinic PD told me not to take Pred. in 12-2008. I was not able to get to zero until 5-2009. The allergies began in FL this spring. I lost total control of my house this summer after a sump pump failure in June. This caused a lot of stress and I returned to Pred. as I was not taking care of me. Problems in FL came blooming trees. The house experience brought mold, dust and chemicals.

My Cat-skans did change through 5-2009 from 11-2008. I am afraid of the next one. So I keep trying to clear lungs each day. For a time I hoped I did not have IPF as my PF started within 24 hours of my working carelessly with fiberglass insulation. My brother died with IPF 7-2008. My PDs know my family history. However, I wish DRs would spend more time listening to me. VA Drs are usually good and mine recognized that I had a restrictive problem.

Thank You, Burns

To: Breathe-Support Sent: Friday, September 18, 2009 10:15:19 PMSubject: Re: Here we go again.... now I have UIP

,

Yes theoretically an extreme type of allergic reaction can cause restrictive lung disease. In that case it is called Hypersensitivity Pneumomitis not IPF. This is not a typical run of the mill allergy though. It's a situation where there is usually long term exposure to something that is extremely irritating and toxic (something like mold or bird dander and droppings) to the lungs and causes the bodies immune system to hyper respond with tremendous inflammation and scarring. It's not the kind of allergic reaction where there is sneezing, runny nose or a productive phlegmy cough..

Obviously it's impossible to say exactly what your situation is. Where are you located? I understand you get your medical care through the VA system? At which VA hospital do you receive your care? I only ask because the VA hospital here in Durham NC is across the street from Duke and I know there is sharing of resources and expertise. Maybe there is something similar in your area?

I'm wondering why your physician does not think you have restrictive lung disease. On what is he basing his opinion? I'm sorry to read about your brother's death from IPF. Does your doctor know about your family history? Asthma is typically an obstructive lung disease, not restrictive. However as we all know here it is not rare to have both kinds of lung disease at the same time.

Honestly it does not sound like anyone has been able to give you a conherent diagnosis. Would it be possible for you to be evaluated at one of the hospitals listed here: www.ipfnet.org? I'm so sorry that you are going through this. If there is anything I can do to help, please let me know! You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 9:42:29 PMSubject: Re: Here we go again.... now I have UIP

Beth: I am attempting to solve what has become a mysteryto me. I was DXed with IPF about a year ago. I know this to be a restrictive disease. My VA breathing tests show that I also have a restrictive disease. My local Pul. Dr. denies that I have both. My brother died with IPF. He also had asthma as some of my other siblings have. Prior to IPF I do not remember having asthma or allergies. This year I have developed all sorts of allergies. I fill up enough with allergies that I can feel weak and ill for a short time each day.

I work for four to six hours each day trying to clear my lungs. Some days the nurses at my rehab class tell my lungs are clear and this is my daily goal.

My question is: Can allergies alone be the cause of a restrictive disease in my lungs.

My oxygen level was probably 97 prior to IPF. One year later it is holding around 96.

Burns

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 7:18:41 PMSubject: Re: Here we go again.... now I have UIP

Stefani,

Believe me we l know how confusing and overwhelming this is...even the doctors are confused. The language can be contradictory and conflicting. It's very hard to know what to believe and then what to do about any of it.

The first thing I want to kind of straigten out is the definition of ILD.. That stands for interstitial lung disease. This lung disease affects the tissue and the space around the air sacs. ILD's are restrictive lung diseases. Among them are sarcoidosis, UIP, NSIP, HP, DIP etc. COPD is not an ILD. COPD is in an entirely different category of lung disease called obstructive lung disease. To really oversimplify things restrictive lung disease causes problems with inhaling and getting enough oxygen in. Obstructive lung disease causes problems with exhaling and getting carbon dioxide out. It is possible to have both.

About the "prognosis", you know we all have that cliche that we don't have an expiration date tatooed on us. It is a cliche but it is also true. There may not be much you can do medically. Right now there are no drugs, there are no real treatments. Occasionally someone with UIP will report that their situation is stablized by the use of predinsone or Imuran or Cellcept. These are all options to explore and perhaps consider. The other thing to do and what I HIGHLY recommend is to take the best care of yourself that you possibly can. Leanne and I were talking earlier about this. She calls it 'clean living'. Eating really well, getting plenty of rest, exercise regularly to your capacity and use your oxygen as needed to keep your sats up over 90. That alone will help keep your heart healthy.

My old insurance only paid 50% of my oxygen also. It was horrible and that's what prompted my siblings to purchase my self fill concentrator. Three years later I still use it overnight and it will fill tanks for me. I think it cost around $3000. That's less than 6 months of what you're paying now. Something like that might be worth considersing.

I'm sorry you are going through all this. It stinks in a big way. We're all in your corner, cheering you on!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Stefani <sfshaner (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 6:54:45 PMSubject: Here we go again.... now I have UIP

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.StefaniILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

September 18, 2009

Stefani,If its none of my business let me know but what do you all have for equipment? I have a 10 liter concentrator, a 5 liter concentrator and I go through about 16 E tanks a month and my people bill Humana $265 a month. Am I getting a deal or are you getting screwed?And as for being on borrowed time, we were all just going over that...I say Bite Me! Since I'm going on my 8th year I guess I actually died 5 years ago? Whatcha gonna do, just keep on keeping on! How do you feel? That should tell you more than anything else. Course you are listening to a woman who watched her fingernails turn blue tonight when my E tank ran out while I was checking out my groceries LOL Very pretty purpleish blue color. Of course I had another E tank in the truck but it was a real interesting moment.Dyane Phoenix ipf 02>> 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>

September 19, 2009

Dyane -

I own a 5 L concentrator, bought for me by a previous insurance. I have an

Ifill, 3 tanks and a stand for the D size tank. From what your unsurance

company is getting billed, I am the one getting ROYALLY screwed. The bills for

the insurance company are in excess of $600 dollars and that is for 15 days in

the month of July ($21.00 a day PLUS for oxygen supplies) and the cost of the

IFILL rental. I am going to start screaming to everyone!! By the way, I do not

get an itemized bill. The itemized bill goes to the insurance company, I get a

copy from them telling me what they will pay for and what my share is. I get a

single line bill from the oxygen supplier saying this is what I owe after the

insurance company is billed. What a racket. I am going to ask the oxygen

supplier for a full explanation of what they are billing for. Maybe I am

missing something. I have a CPAP, but I thought that was purchased. It is such

a pain when you have two different insurers (we switched from Aetna to Blue

Cross/Blue Shield). Aetna preferred purchasing supplies as opposed to renting.

That is how I got the 5L concentrator and nebulizer (that I no longer use, but

is nice to have as my husband has major allergies). My regular GP had me using

the nebulizer with a saline solution for my lungs.

I also did a check on the pathologist that my pulmo dude sent my biopsy slides

to, a Tom Colby with the Mayo. He is in sdale, just like Bruce said. This

really pisses me off because BEFORE I had the biopsy, I provided my pulmo dude

with the name, address, phone number and email address of Dr. Fernandez,

the doctor I saw while at National Jewish and requested the slides be sent

there. I gave the same information to the hospital. AND MY WISHES WERE NOT

EVEN TAKEN INTO CONSIDERATION. Another SCREAMING point. I had contacted Dr.

Fernandez and he told me he would be glad to work with my pulmonologist here in

Salt Lake City. This pulmo-dude is my third. This one was the only one I could

find that my insurance would cover. I have been trying to work with the system

and every time I do, I end up getting fucked (sorry for that) over.

My thoracic surgeon says I am a little headstrong (YOU AIN'T SEEN NOTHING YET).

He claims that is why I was out in 5 days (I would have been out sooner, but one

of the staff removed the clamp on the drainage bag and the didn't have an

accurate measure on my 24 hour drain which was an important part of the " yeah,

she is ready to have her drain tube removed and she can be released " Process.

As to how I am feeling... I have been stable for 3 years (without any doctors

assist), according to Dr. Fernandez at National Jewish. I brought all of the

initial information to Denver in June. They compared everything to the tests

they ran while I was there for a week. Dr. Fernandez thought I would do well

for 10 plus years saying no one really knew much about PF, but from his

findings, it looked like I was doing reasonably well (except for the fact I

really needed oxygen). I have not had a big drop in my daily functioning, I

just take my time and don't do anything that hurts or over-exerts me. I love

having an oximeter to check my instincts and I do use oxygen when I drop to 88.

My CPAP keeps me around 92 at night, but I can bleen in an additional 2L dose of

oxygen if the air quality is bad or I am feeling stressed or uncommonly fatigued

at bedtime (it happens once in awhile). It has taken me 3 years to bring my

routine blood tests all back to a relatively normal state (I am thinking it is

the prednisone that threw my liver numbers really out of whack). They are still

not to their pre-prednisone levels, but are a lot less out of normal range.

Sorry, I getting " blousy " and rant a lot when I get worked up by these idiots

out there.

I have a lot of work to do this weekend as I build my case(s) with the oxygen

supplier, insurance company and my pulmo dude. Going to get my facts, work out

my pitch (so it doesn't sound like I am telling them to go to hell) and prepare

for Monday.

Thanks for all of your support ....

Stefani

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

4/2009

My