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

September 20, 2009

Joyce Rudy, Have you ever unexpectedly gone back to a former pulmonologist who

predicted the worst in a short time and presented your smiling, happy self? I

have. You would enjoy that!

Jerry/Mississippi/54/IPF/dx April 05

> > > > > >

> > > > > > 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 20, 2009

Joyce Rudy

Actually many consider Mayo of sdale to have better pathology than

Minnesota. The weakness i see though is one that is common even locally.

Slides collected sent to pathologist. Pathologist writes report and

sends to doctor. Often no interaction. So no asking back and forth or

comparing to doctor's notes or even talking about it versus the CT's.

It's technically correct but because it's done in a vacuum doesn't have

absolute maximum benefit.

Now, my three biopsy reports all concluded the same. But in Chicago the

Pulmonologist and the Pathologist were actually able to stand together

and talk, but only after the Pathologist had written an initial report.

The pulmonologist was able to ask " what do you mean by this " and say

" how do you reconcile this " or " the CT's didn't show this or did show

this....look " . It's not always easy or precise but I do believe that by

having the most information possible they are most likely to reach the

right conclusion. In my case, the pulmonologist actually went through a

process of saying are you sure it couldn't be NSIP and had the

pathologist tell her why, in spite of the atypical comments and things

that weren't ordinary he was sure it was UIP. Turns out his report was

nothing different but he was the only one she had the opportunity to

thoroughly quiz.

> > > > > >

> > > > > > 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 20, 2009

Jerry

The worst thing about her local pulmonologist was not only did he not

encourage her to go to experts, he strongly discouraged her from going

to National Jewish for a second opinion. That by itself is enough to

tell you all you need to know. I was long ago told my a doctor who had

just recommended surgery to me that if any doctor ever had a problem

with a second opinion to change doctors. Guess he was confident because

I found a highly recommended doctor for a second opinion who backed his

up and also told me he was the best surgeon I could possibly have.

I'm fortunate that my pulmonologist and rheumatologist, as well as other

doctors, have fully supported and recommended additional opinions.

> > > > > > >

> > > > > > > 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 21, 2009

Bruce, My first pulmo was eager for me to go to an ILD research center, and even

admitted he was not comfortable treating me. He had studied at Mayo in

Rochester. He wouldn't have treated me past my biopsy. Joyce Ruby's doctor was

one of those who " knows not that he knows not " . Before my biopsy I didn't

hesitate to seek a second opinion before going in for it. This second doctor

said he felt comfortable treating me, but they didn't provide any trials there

at University of Mississippi. Tulane, after a lot of internet time, is where I

ended up. Incidently, both my first pulmo and my present studied at the Mayo in

Rochester, but by far the most knowledgeable about PF was the Tulane doctor. All

3 of my pulmonologists can be considered competent, even the first, because he

knew his limitations. Your doctor who told you to feel free to ask for a second

opinion showed himself to be quite competent. That will always be a litmus test

from here on.

I also think it is important for a doctor to be accessable between visits. I

think it is who said his doctor's office calls regularly. That pulmo is

for keeps.

Jerry/Mississippi/54/IPF/dx April 05

> > > > > > > >

> > > > > > > > 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 21, 2009

Jerry and G,I am very happy with my pulmo doc too, Dr. Sandblom in Bellevue, WA. ! I have e-mail access to him and can ask him anything and he will usually respond by the next day. He is also willing to work with Dr. Raghu at the UWMC, knows him well and actually set up Dr. Raghu's lab. It's good to have both doctors double checking each other and working with me. Dr. Raghu is much more aggressive in his approach, whichkeeps Dr. Sandblom on his toes...lol. After my last visit I gave Dr. Sandblom a hug and he said to me, "I wish you were a friend and not a patient." I feel good about my doctor's and treatment plan. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Monday, September 21, 2009 4:49:12 AMSubject: Re: Here we go again.... now I

have UIP

Bruce, My first pulmo was eager for me to go to an ILD research center, and even admitted he was not comfortable treating me. He had studied at Mayo in Rochester. He wouldn't have treated me past my biopsy. Joyce Ruby's doctor was one of those who "knows not that he knows not". Before my biopsy I didn't hesitate to seek a second opinion before going in for it. This second doctor said he felt comfortable treating me, but they didn't provide any trials there at University of Mississippi. Tulane, after a lot of internet time, is where I ended up. Incidently, both my first pulmo and my present studied at the Mayo in Rochester, but by far the most knowledgeable about PF was the Tulane doctor. All 3 of my pulmonologists can be considered competent, even the first, because he knew his limitations. Your doctor who told you to feel free to ask for a second opinion showed himself to be quite competent. That will always be a litmus test from

here on.

I also think it is important for a doctor to be accessable between visits. I think it is who said his doctor's office calls regularly. That pulmo is for keeps.

Jerry/Mississippi/ 54/IPF/dx April 05

> > > > > > > >

> > > > > > > > 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 24, 2009

Thanks Jerry, I needed to hear the comment about accepting a helping hand if someone offers. I don't like asking anyone for help because I know other people are busy with their own lives and problems and trying to keep up with their own schedules. So, if I need help I have to hire someone and then its dependent on my finances, so some stuff just doesn't get done.My son left for his senior year in college and it was more emotional for me this year, because of this disease, than when he left for his first year! He was a big help this summer with my outdoor work and a good listener. It feels like some of my friends have pulled away and I live out in the Country and just don't have the energy to make plans to do things and drive

into town on the weekends after working all week. I have pretty much made up my mind to apply for long-term disability in January. I just can't handle the stress and pressure, co-workers, and the 1-1/2 hour commute everyday. I'm hoping to sell my house next Spring and move closer to family and friends. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Monday, September 21, 2009 7:46:59

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

,

You are so new at this, and you are into it like a seasoned patient. You have an ideal setup there and a good working relationship with both your pulmonologists. You have the convenience of having Dr. Sandblom along with the more specialized Dr. Raghu. I have considered having a similar situation here with Dr. Lasky in Tulane and another pulmo closer in. At almost 7 hours to New Orleans via Vicksburg, where my friend lives, if I were to have a sudden emergency, it would be good to have a backup. And Dr. Lasky spends a lot of time researching away from the clinic. I guess going down to Tulane with my friend from Vicksburg is really a special time. Flo spent 2 days and nights with me in hospital during the biopsy, and has been a steadfast best friend since. Also I have good friends I like to visit in Vicksburg, so it looks like it will take a crisis in my health to get me to do what you have done.

That reminds me, if someone now offers you a helping hand, don't hesitate to accept. They may not understand this disease totally, but they truly want to help in any way they can. Being that independant soul that I am, accepting that out-reached is not alway easy. For the future, I'll get on the internet and find a good local pulmonologist. That much can get done.

Jerry/Mississippi/ 54/IPF/dx April 05

> > > > > > > > >

> > > > > > > > > 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 29, 2009

Thank you Beth.

To: Breathe-Support Cc: Wilma Doyle Sent: Tuesday, September 29, 2009 10:09:55 AMSubject: Re: Here we go again.... now I have UIP

,

I'm so sorry that you are going through this. The road to accurate diagnosis can be long and confusing and difficult. I too was treated for bronchitis repeatedly and asthma for nearly 2 years before I was finally diagnosed with pulmonary fibrosis. Though it is a devastating diagnosis,in an odd way I was relieved to finally understand what was wrong.

For what it's worth I agree wholeheartedly with your decision to return to Cleveland Clinic. They are one of IPFnet.org's "Centers of Excellence" and they have an excellent reputation. My only other suggestion would be to specifically request the HP antibody panel blood work. You have such a strong history of allergic symptoms though I would be suprised if they didn't order it without you even having to ask. It's pretty standard in a workup for pulmonary fibrosis.

Please keep us posted. 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. comCc: Wilma Doyle Sent: Monday, September 28, 2009 10:13:43 PMSubject: Re: Here we go again.... now I have UIP

Beth: I have returned to this message and reread it a number of times. I went in for my second round of allergy shots today.An RN I have never met before insisted that I have asthma and asked me about times when it was difficult for me to breath. I admitted that I had a short one recently on a humid evening walking my dog. She told me that I must carry my Albuteral Inhalation Device with me at all times. I do not know how she was so informed about me. My local PD does not want to see me for six months and he insists that my only problem is IPF. My Allergy Dr. said my lungs were reacting the same as they would if I did have asthma--inflammatio n. He would not say I had asthma.

My next stop is with my VA PD. My sister works at the Cleveland Clinic and she helped me see a CC PD last December. He decided I had beginning IPF. I do not think there was an allergy component at this time. My allergies experience began in Florida during a period when I was trying to cut back from 60 mgs of Pred. to zero. CC recommended that I avoid using Pred. Since reaching zero I have returned to 20 mg. My VA PD insisted I use Pred..

I am now so filled up in my lungs and nasal cavities that I no longer recognize the source of my allergies. So thanks to you I will plan on returning to CC. Burns

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: 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 29, 2009

Thanks , You must be a real survivor. I needed to see HP spelled out. My brother died from IPF. I think my mother and father had HP or farmer's lung disease. They both lived for many years with bad lungs. Now can you tell me, what is Polymonitis. Burns

To: Breathe-Support Sent: Monday, September 28, 2009 10:40:42 PMSubject: Re: Here we go again.... now I have UIP

Have you had a Hypersensitivity pneumonitis antibody panels blood test. If not you should ask for onehttp://www.ahealthy me.com/topic/ adam1000109http://www.medicine net.com/hypersen sitivity_ pneumonitis/ page2.htm P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'

From: Burns <johnburns999@ att.net>Subject: Re: Here we go again.... now I have UIPTo: Breathe-Support@ yahoogroups. comCc: "Wilma Doyle" Date: Monday, September 28, 2009, 9:13 PM

Beth: I have returned to this message and reread it a number of times. I went in for my second round of allergy shots today.An RN I have never met before insisted that I have asthma and asked me about times when it was difficult for me to breath. I admitted that I had a short one recently on a humid evening walking my dog. She told me that I must carry my Albuteral Inhalation Device with me at all times. I do not know how she was so informed about me. My local PD does not want to see me for six months and he insists that my only problem is IPF. My Allergy Dr. said my lungs were reacting the same as they would if I did have asthma--inflammatio n. He would not say I had asthma.

My next stop is with my VA PD. My sister works at the Cleveland Clinic and she helped me see a CC PD last December. He decided I had beginning IPF. I do not think there was an allergy component at this time. My allergies experience began in Florida during a period when I was trying to cut back from 60 mgs of Pred. to zero.. CC recommended that I avoid using Pred. Since reaching zero I have returned to 20 mg. My VA PD insisted I use Pred.

I am now so filled up in my lungs and nasal cavities that I no longer recognize the source of my allergies. So thanks to you I will plan on returning to CC. Burns

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: 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 29, 2009

Polymositis is a muscle disease. Thirty percent of the people with it get PF, It is the cause of mine. It causes pain and weakness in the legs and arms. It is manageable with Prednisone. Have been taken it since fall of 1998. I have a blood test every month to check if I am in a flare. It really cause me no problem I could live to 100 but the PF will get me a lot sooner http://www.medicinenet.com/polymyositis/article.htm P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'

From: Burns <johnburns999@ att.net>Subject: Re: Here we go again.... now I have UIPTo: Breathe-Support@ yahoogroups. comCc: "Wilma Doyle" Date: Monday, September 28, 2009, 9:13 PM

Beth: I have returned to this message and reread it a number of times. I went in for my second round of allergy shots today.An RN I have never met before insisted that I have asthma and asked me about times when it was difficult for me to breath. I admitted that I had a short one recently on a humid evening walking my dog. She told me that I must carry my Albuteral Inhalation Device with me at all times. I do not know how she was so informed about me. My local PD does not want to see me for six months and he insists that my only problem is IPF. My Allergy Dr. said my lungs were reacting the same as they would if I did have asthma--inflammatio n. He would not say I had asthma.

My next stop is with my VA PD. My sister works at the Cleveland Clinic and she helped me see a CC PD last December. He decided I had beginning IPF. I do not think there was an allergy component at this time. My allergies experience began in Florida during a period when I was trying to cut back from 60 mgs of Pred. to zero.. CC recommended that I avoid using Pred. Since reaching zero I have returned to 20 mg. My VA PD insisted I use Pred.

I am now so filled up in my lungs and nasal cavities that I no longer recognize the source of my allergies. So thanks to you I will plan on returning to CC. Burns

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: 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 30, 2009

Bruce,

I am scheduled for a whole week at National Jewish. I'm guessing since I'm coming from Phoenix, they want to have enough days to do things that they may want to do after getting my history, etc. They already sent me a schedule and the first day is very busy with labs and histories (1.5 hours sheduled with Dr. Fernandez), 2nd day I think has a 6mw and echos. I'm getting very excited.

Dyane Phoenix, ipf 02> > >> > >> > >>From: Burns <johnburns999@ att.net>> > >>Subject: Re: Here we go again.... now I have UIP> > >>To: Breathe-Support@ yahoogroups. com> > >>Cc: "Wilma Doyle" DOYLEW@> > >>Date: Monday, September 28, 2009, 9:13 PM> > >>> > >>> > >>> > >> Beth: I have returned to this message and reread it a number> of times. I went in for my second round of allergy shots today.> > >>An RN I have never met before insisted that I have asthma and asked> me about times when it was difficult for me to breath. I admitted that> I had a short one recently on a humid evening walking my dog. She told> me that I must carry my Albuteral Inhalation Device with me at all> times. I do not know how she was so informed about me. My local PD> does not want to see me for six months and he insists that my only> problem is IPF. My Allergy Dr. said my lungs were reacting the same as> they would if I did have asthma--inflammatio n. He would not say I had> asthma.> > >>> > >>My next stop is with my VA PD. My sister works at the Cleveland> Clinic and she helped me see a CC PD last December. He decided I had> beginning IPF. I do not think there was an allergy component at this> time. My allergies experience began in Florida during a period when I> was trying to cut back from 60 mgs of Pred. to zero. CC recommended> that I avoid using Pred. Since reaching zero I have returned to 20 mg.> My VA PD insisted I use Pred.> > >> I am now so filled up in my lungs and nasal cavities that I no> longer recognize the source of my allergies. So thanks to you I will> plan on returning to CC. Burns> > >>> > >>> > ________________________________> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > >>To: Breathe-Support@ yahoogroups. com> > >>Sent: Friday, September 18, 2009 10:15:19 PM> > >>Subject: 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. com> > >>Sent: Friday, September 18, 2009 9:42:29 PM> > >>Subject: Re: Here we go again.... now I have UIP> > >>> > >>> > >> Beth: I am attempting to solve what has become a mystery> > >>to 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. com> > >>Sent: Friday, September 18, 2009 7:18:41 PM> > >>Subject: 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. com> > >>Sent: Friday, September 18, 2009 6:54:45 PM> > >>Subject: 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.> > >>> > >>Stefani> > >>ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006,> Sleep Apnea 4/2009> > >>> > >>> > >> >>

September 30, 2009

Dyane

For me its a great experience with the thoroughness.

> > > >

> > > >>From: Burns <johnburns999@ att.net>

> > > >>Subject: Re: Here we go again.... now I have

UIP

> > > >>To: Breathe-Support@ yahoogroups. com

> > > >>Cc: " Wilma Doyle " DOYLEW@

> > > >>Date: Monday, September 28, 2009, 9:13 PM

> > > >>

> > > >> Beth: I have returned to this message and reread it a

number

> > of times. I went in for my second round of allergy shots today.

> > > >>An RN I have never met before insisted that I have asthma and

> asked

> > me about times when it was difficult for me to breath. I admitted

that

> > I had a short one recently on a humid evening walking my dog. She

told

> > me that I must carry my Albuteral Inhalation Device with me at all

> > times. I do not know how she was so informed about me. My local PD

> > does not want to see me for six months and he insists that my only

> > problem is IPF. My Allergy Dr. said my lungs were reacting the same

as

> > they would if I did have asthma--inflammatio n. He would not say I

had

> > asthma.

> > > >>

> > > >>My next stop is with my VA PD. My sister works at the Cleveland

> > Clinic and she helped me see a CC PD last December. He decided I had

> > beginning IPF. I do not think there was an allergy component at this

> > time. My allergies experience began in Florida during a period when

I

> > was trying to cut back from 60 mgs of Pred. to zero. CC recommended

> > that I avoid using Pred. Since reaching zero I have returned to 20

mg.

> > My VA PD insisted I use Pred.

> > > >> I am now so filled up in my lungs and nasal cavities that I no

> > longer recognize the source of my allergies. So thanks to you I will

> > plan on returning to CC. Burns

> > > >>

> > > ________________________________

> > > From: Beth mbmurtha (AT) yahoo (DOT) com>

> > > >>To: Breathe-Support@ yahoogroups. com

> > > >>Sent: Friday, September 18, 2009 10:15:19 PM

> > > >>Subject: 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. com

> > > >>Sent: Friday, September 18, 2009 9:42:29 PM

> > > >>Subject: Re: Here we go again.... now I have

UIP

> > > >>

> > > >> Beth: I am attempting to solve what has become a mystery

> > > >>to 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. com

> > > >>Sent: Friday, September 18, 2009 7:18:41 PM

> > > >>Subject: 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

Sign In

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

Recommended Posts

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity