Re: Tammy

[Guest guest]

Beth,After reading a couple of posts I am wondering...; can a biopsy have errors in it. What does a specialist in IPF see in a biopsy that a pathologist doesn't To: Breathe-Support Sent: Fri, November 27, 2009 8:34:51 AMSubject: Tammy

Tammy,

Now that my head has semi-cleared from the Thanksgiving insanity in my family, I'd like to put my 2 cents worth in here also.

You mentioned possibly going to Denver for another opinion. GO! We've had several members over the last few months who've traveled to National Jewish for evaluations and ALL of them have come away impressed. While I'm certain your doctors have done their level best for you, the problem is they don't know what they don't know. ILD is fairly rare. The average community based pulmo doesn't see that much of it compared to things like emphysema and COPD. The field is changing rapidly and a trip to a university medical center with ILD specialists can only help you in the long run. Given your age, your personal and family history of auto-immune disorders, the fact that you have 4 young children etc. All of this screams for expert consults. Los Angeles is another valid choice, I'm only biased because we've had so many folks recently so happy with National Jewish in Denver.

Also I understand the doctors are anxious to get started treating you. My suggestion would be to resist that until you can get into see the specialists. Treatment with steroids may indeed be the best course of action however once you are on them they will skew test results for a long time to come making sorting out what's going on with you more difficult.

When I was diagnosed in 2006 I was treated with very high doses of solumedrol in the hospital and went home on 100mg of prednisone. I've no regrets about that. My disease was advanced and the treatment saved my life and then stablized me. It did however mask the signs of my dermatomyositis (connective tissue disease) so that I did not get an accurate diagnosis of that for over two and a half years.

Because you are not currently severely ill you have the luxury of pursuing a complete accurate picture of what's going on with you. Go to Denver, or LA or come here to Durham and go to Duke or Chicago to University of Chicago, take all your existing test results, your biopsy slides and gather all the information you can. I promise the effort will serve you well for years to come and will help you continue to be a wife and mom to your family.

I do understand how difficult it is not to panic. Been there, done that and have lived to talk about it. Your life is not over by a long shot. Be kind to yourself, get the rest you need (easier said than done with 4 little ones I know), eat well, exercise etc etc. Be very patient with yourself.

If there's anything I can to help please just give a shout!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: tammy stewart <nicunrs01 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 11:21:04 PMSubject: Re: Re: Newly Diagnosed very scared

Bruce,

Thanks for the response to my initial email. Well the way this all came about was at my annual physical with my doctor I mentioned to her that I have noticed i get short of breath a little easier then I ever used to and she decided to do a CTscan. I guess i should mention that I have had crackles in my lower lobes for at least 4 years and the docs never bothered to investigate why. Ok so back to the CT scan, the results were read that there were changes worriesome of pulmonary fibrosis, so I was referred to a local pulmonologist (omaha< NE) he spent about 5 mins with me and tells me I needed to have a lung biopsy, I then met with the surgeon two days later and was in the OR having my lung biopsy last friday. i got the call yesterday from the surgeon that the pathologist (Dr. Katzenstein from syracuse NY) read it as UIP however there were large areas of increased inflammation that is consistent with a connective tissue disorder. So now I am to

meet with the pulmonologist and surgeon on tuesday to develop a plan of care. I talked to my husband tonight and feel very strongly thAT I need to go to denver or LA and have an eval done at one of the centers of excellence. I know that my pulmonologist here in omaha wants to start me on steriods ASAP and i am not sure if that is the right thing my head is spinning right now and I dont know enough about the disease to know what I should do. Any thoughts on this subject? i suppose it is also important to mention that I have a history of Rheumatoid arthritis and raynauds phenomenon. Not sure if this plays a role on the type of IPF i have but for some reason I dont have a lot of confidence in what I have been told so far. Do you know much about the denver center? Or the LA clinic?Do i just call them and ask for an appointment of do i need my doctor to suggest it? Sorry I have so many questions but I am so thankful for your support and the kindness of

all the people on this website. Thank you for your time and please let me know what you think. Tammy

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 8:19:13 AMSubject: Re: Newly Diagnosed very scared

TammyWelcome here even though wish you didn't need us. Where are you?We would also be interested in where you were diagnosed and by whom? Ifit was not a Center of Excellence or and ILD center I would stronglyrecommend a second opinion at one and more thorough diagnosis. I'mcurious as to what even led to the diagnosis and biopsy with your oxygensaturation so high. Most of us took much longer for anyone to believe wehad a problem.One of the reasons I especially mention the second opinion at a Centerwith Expertise is the rarity for you to have UIP so young and with noidentified cause. So I would want to be sure a second pathologistspecializing in the disease had seen the biopsy and that possibleunderlying causes from hypersensitivities to connective tissue diseaseshad been thoroughly evaluated.Now beyond diagnosis and good medical care, it sounds like you'refeeling pretty good.

Remember that. Don't dismiss the reality of whatmay happen in the future but don't live it either. Life with IPF can begood and learning to live and make the most of it is what this site isabout.At your age too, I'm sure you'll probably consider a future transplantso you have plenty of time to research and discuss and prepare towardit.>> Hello all as I sit here and write this I imagine everyone of you wrotesomething similiar to this when you were first diagnosis. I am a healthy35 yo mother of 4 beautiful children and was diagnosis last week withIPF. The lung biopsy came back today as UIP which as I understand is theworst kind to have. I am not sure what all this means

except that I amterrified and could use some help in understanding what to expect. Iwould love to hear from some of you and build new friendships withpeople who can relate to the fear I have. As of now my pulmonaryfunction test are the only thing that are abnormal. I sat 98-100% onroom air even with activity. I do get slightly short of breath withphysical activity but continue to go to the gym 5-6days a week and workout. I am also a nurse however my patient population is the neonates. Icare for sick or premature infants. THanks for listening and please helpme any way you feel appropriate even if it is just some words ofencouragment. May God Bless all of you and may he also grant me peaceand courage as I face this disease. Tammy >

[Guest guest]

,

Anything can have errors. We're all human, even doctors, lol and everyone makes mistakes. Having your biopsy slides read by a pathologist in a community hospital and having them read by a pathologist in an medical center with specialists in ILD can be very different experiences. That doesn't mean the local guy can't get it right, it just means that the pathologist in a medical center that sees this kind of thing all the time is more likely to pick up subtle differences and finer points that someone less experienced in ILD's might miss.

In addition the pathologist in a university medical center with an ILD department will also often consult face to face with the pulmonologist in charge of the case. They can view the slides together and discuss and argue about what they are seeing. This can lead to much higher rates of accuracy where a diagnosis is concerned.

To use my own experience as an example. I had my biopsy done in June of 06 during my initial hospitalization at Nyack Hospital in Nyack, NY. The biopsy report was very vague, stated that I had an "undetermined variant" of pulmonary fibrosis, possibly UIP or DIP or NSIP. Well that certainly left the field wide open.

When my slides were read at Duke and at Columbia/Cornell in NY they both concurred that I have fibrotic NSIP likely caused by an auto-immune/connective tissue disorder.

It wasn't so much that the first report was wrong. It was just vague and non-specific and unhelpful. This happens sometimes in community hospitals where they just don't see very much of these diseases. The pathologists are sometimes just not familiar with the subtlties that differentiate one ILD from another. I'm not saying you can't get good care at the local community based level. You can. But when you have a rareish disease it just makes sense to me to get to a place where the doctors are familiar and comfortable with these illnesses.

I hope that makes some sense.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, November 28, 2009 1:53:03 PMSubject: Re: Tammy

Beth,After reading a couple of posts I am wondering... ; can a biopsy have errors in it. What does a specialist in IPF see in a biopsy that a pathologist doesn't

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Fri, November 27, 2009 8:34:51 AMSubject: Tammy

Tammy,

Now that my head has semi-cleared from the Thanksgiving insanity in my family, I'd like to put my 2 cents worth in here also.

You mentioned possibly going to Denver for another opinion. GO! We've had several members over the last few months who've traveled to National Jewish for evaluations and ALL of them have come away impressed. While I'm certain your doctors have done their level best for you, the problem is they don't know what they don't know. ILD is fairly rare. The average community based pulmo doesn't see that much of it compared to things like emphysema and COPD. The field is changing rapidly and a trip to a university medical center with ILD specialists can only help you in the long run. Given your age, your personal and family history of auto-immune disorders, the fact that you have 4 young children etc. All of this screams for expert consults. Los Angeles is another valid choice, I'm only biased because we've had so many folks recently so happy with National Jewish in Denver.

Also I understand the doctors are anxious to get started treating you. My suggestion would be to resist that until you can get into see the specialists. Treatment with steroids may indeed be the best course of action however once you are on them they will skew test results for a long time to come making sorting out what's going on with you more difficult.

When I was diagnosed in 2006 I was treated with very high doses of solumedrol in the hospital and went home on 100mg of prednisone. I've no regrets about that. My disease was advanced and the treatment saved my life and then stablized me. It did however mask the signs of my dermatomyositis (connective tissue disease) so that I did not get an accurate diagnosis of that for over two and a half years.

Because you are not currently severely ill you have the luxury of pursuing a complete accurate picture of what's going on with you. Go to Denver, or LA or come here to Durham and go to Duke or Chicago to University of Chicago, take all your existing test results, your biopsy slides and gather all the information you can. I promise the effort will serve you well for years to come and will help you continue to be a wife and mom to your family.

I do understand how difficult it is not to panic. Been there, done that and have lived to talk about it. Your life is not over by a long shot. Be kind to yourself, get the rest you need (easier said than done with 4 little ones I know), eat well, exercise etc etc. Be very patient with yourself.

If there's anything I can to help please just give a shout!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: tammy stewart <nicunrs01 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 11:21:04 PMSubject: Re: Re: Newly Diagnosed very scared

Bruce,

Thanks for the response to my initial email. Well the way this all came about was at my annual physical with my doctor I mentioned to her that I have noticed i get short of breath a little easier then I ever used to and she decided to do a CTscan. I guess i should mention that I have had crackles in my lower lobes for at least 4 years and the docs never bothered to investigate why. Ok so back to the CT scan, the results were read that there were changes worriesome of pulmonary fibrosis, so I was referred to a local pulmonologist (omaha< NE) he spent about 5 mins with me and tells me I needed to have a lung biopsy, I then met with the surgeon two days later and was in the OR having my lung biopsy last friday. i got the call yesterday from the surgeon that the pathologist (Dr. Katzenstein from syracuse NY) read it as UIP however there were large areas of increased inflammation that is consistent with a connective tissue disorder. So now I am to

meet with the pulmonologist and surgeon on tuesday to develop a plan of care. I talked to my husband tonight and feel very strongly thAT I need to go to denver or LA and have an eval done at one of the centers of excellence. I know that my pulmonologist here in omaha wants to start me on steriods ASAP and i am not sure if that is the right thing my head is spinning right now and I dont know enough about the disease to know what I should do. Any thoughts on this subject? i suppose it is also important to mention that I have a history of Rheumatoid arthritis and raynauds phenomenon. Not sure if this plays a role on the type of IPF i have but for some reason I dont have a lot of confidence in what I have been told so far. Do you know much about the denver center? Or the LA clinic?Do i just call them and ask for an appointment of do i need my doctor to suggest it? Sorry I have so many questions but I am so thankful for your support and the kindness of

all the people on this website. Thank you for your time and please let me know what you think. Tammy

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 8:19:13 AMSubject: Re: Newly Diagnosed very scared

TammyWelcome here even though wish you didn't need us. Where are you?We would also be interested in where you were diagnosed and by whom? Ifit was not a Center of Excellence or and ILD center I would stronglyrecommend a second opinion at one and more thorough diagnosis. I'mcurious as to what even led to the diagnosis and biopsy with your oxygensaturation so high. Most of us took much longer for anyone to believe wehad a problem.One of the reasons I especially mention the second opinion at a Centerwith Expertise is the rarity for you to have UIP so young and with noidentified cause. So I would want to be sure a second pathologistspecializing in the disease had seen the biopsy and that possibleunderlying causes from hypersensitivities to connective tissue diseaseshad been thoroughly evaluated.Now beyond diagnosis and good medical care, it sounds like you'refeeling pretty good.

Remember that. Don't dismiss the reality of whatmay happen in the future but don't live it either. Life with IPF can begood and learning to live and make the most of it is what this site isabout.At your age too, I'm sure you'll probably consider a future transplantso you have plenty of time to research and discuss and prepare towardit.>> Hello all as I sit here and write this I imagine everyone of you wrotesomething similiar to this when you were first diagnosis. I am a healthy35 yo mother of 4 beautiful children and was diagnosis last week withIPF. The lung biopsy came back today as UIP which as I understand is theworst kind to have. I am not sure what all this means

except that I amterrified and could use some help in understanding what to expect. Iwould love to hear from some of you and build new friendships withpeople who can relate to the fear I have. As of now my pulmonaryfunction test are the only thing that are abnormal. I sat 98-100% onroom air even with activity. I do get slightly short of breath withphysical activity but continue to go to the gym 5-6days a week and workout. I am also a nurse however my patient population is the neonates. Icare for sick or premature infants. THanks for listening and please helpme any way you feel appropriate even if it is just some words ofencouragment. May God Bless all of you and may he also grant me peaceand courage as I face this disease. Tammy >

[Guest guest]

Good question.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: TammyTo: Breathe-Support Date: Saturday, November 28, 2009, 10:53 AM

Beth,After reading a couple of posts I am wondering... ; can a biopsy have errors in it. What does a specialist in IPF see in a biopsy that a pathologist doesn't From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Fri, November 27, 2009 8:34:51 AMSubject: Tammy

Tammy,

Now that my head has semi-cleared from the Thanksgiving insanity in my family, I'd like to put my 2 cents worth in here also.

You mentioned possibly going to Denver for another opinion. GO! We've had several members over the last few months who've traveled to National Jewish for evaluations and ALL of them have come away impressed. While I'm certain your doctors have done their level best for you, the problem is they don't know what they don't know. ILD is fairly rare. The average community based pulmo doesn't see that much of it compared to things like emphysema and COPD. The field is changing rapidly and a trip to a university medical center with ILD specialists can only help you in the long run. Given your age, your personal and family history of auto-immune disorders, the fact that you have 4 young children etc. All of this screams for expert consults. Los Angeles is another valid choice, I'm only biased because we've had so many folks recently so happy with National Jewish in Denver.

Also I understand the doctors are anxious to get started treating you. My suggestion would be to resist that until you can get into see the specialists. Treatment with steroids may indeed be the best course of action however once you are on them they will skew test results for a long time to come making sorting out what's going on with you more difficult.

When I was diagnosed in 2006 I was treated with very high doses of solumedrol in the hospital and went home on 100mg of prednisone. I've no regrets about that. My disease was advanced and the treatment saved my life and then stablized me. It did however mask the signs of my dermatomyositis (connective tissue disease) so that I did not get an accurate diagnosis of that for over two and a half years.

Because you are not currently severely ill you have the luxury of pursuing a complete accurate picture of what's going on with you. Go to Denver, or LA or come here to Durham and go to Duke or Chicago to University of Chicago, take all your existing test results, your biopsy slides and gather all the information you can. I promise the effort will serve you well for years to come and will help you continue to be a wife and mom to your family.

I do understand how difficult it is not to panic. Been there, done that and have lived to talk about it. Your life is not over by a long shot. Be kind to yourself, get the rest you need (easier said than done with 4 little ones I know), eat well, exercise etc etc. Be very patient with yourself.

If there's anything I can to help please just give a shout!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: tammy stewart <nicunrs01 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 11:21:04 PMSubject: Re: Re: Newly Diagnosed very scared

Bruce,

Thanks for the response to my initial email. Well the way this all came about was at my annual physical with my doctor I mentioned to her that I have noticed i get short of breath a little easier then I ever used to and she decided to do a CTscan. I guess i should mention that I have had crackles in my lower lobes for at least 4 years and the docs never bothered to investigate why. Ok so back to the CT scan, the results were read that there were changes worriesome of pulmonary fibrosis, so I was referred to a local pulmonologist (omaha< NE) he spent about 5 mins with me and tells me I needed to have a lung biopsy, I then met with the surgeon two days later and was in the OR having my lung biopsy last friday. i got the call yesterday from the surgeon that the pathologist (Dr. Katzenstein from syracuse NY) read it as UIP however there were large areas of increased inflammation that is consistent with a connective tissue disorder. So now I am to

meet with the pulmonologist and surgeon on tuesday to develop a plan of care. I talked to my husband tonight and feel very strongly thAT I need to go to denver or LA and have an eval done at one of the centers of excellence. I know that my pulmonologist here in omaha wants to start me on steriods ASAP and i am not sure if that is the right thing my head is spinning right now and I dont know enough about the disease to know what I should do. Any thoughts on this subject? i suppose it is also important to mention that I have a history of Rheumatoid arthritis and raynauds phenomenon. Not sure if this plays a role on the type of IPF i have but for some reason I dont have a lot of confidence in what I have been told so far. Do you know much about the denver center? Or the LA clinic?Do i just call them and ask for an appointment of do i need my doctor to suggest it? Sorry I have so many questions but I am so thankful for your support and the kindness of

all the people on this website. Thank you for your time and please let me know what you think. Tammy

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 8:19:13 AMSubject: Re: Newly Diagnosed very scared

TammyWelcome here even though wish you didn't need us. Where are you?We would also be interested in where you were diagnosed and by whom? Ifit was not a Center of Excellence or and ILD center I would stronglyrecommend a second opinion at one and more thorough diagnosis. I'mcurious as to what even led to the diagnosis and biopsy with your oxygensaturation so high. Most of us took much longer for anyone to believe wehad a problem.One of the reasons I especially mention the second opinion at a Centerwith Expertise is the rarity for you to have UIP so young and with noidentified cause. So I would want to be sure a second pathologistspecializing in the disease had seen the biopsy and that possibleunderlying causes from hypersensitivities to connective tissue diseaseshad been thoroughly evaluated.Now beyond diagnosis and good medical care, it sounds like you'refeeling pretty good.

Remember that. Don't dismiss the reality of whatmay happen in the future but don't live it either. Life with IPF can begood and learning to live and make the most of it is what this site isabout.At your age too, I'm sure you'll probably consider a future transplantso you have plenty of time to research and discuss and prepare towardit.>> Hello all as I sit here and write this I imagine everyone of you wrotesomething similiar to this when you were first diagnosis. I am a healthy35 yo mother of 4 beautiful children and was diagnosis last week withIPF. The lung biopsy came back today as UIP which as I understand is theworst kind to have. I am not sure what all

this means

except that I amterrified and could use some help in understanding what to expect. Iwould love to hear from some of you and build new friendships withpeople who can relate to the fear I have. As of now my pulmonaryfunction test are the only thing that are abnormal. I sat 98-100% onroom air even with activity. I do get slightly short of breath withphysical activity but continue to go to the gym 5-6days a week and workout. I am also a nurse however my patient population is the neonates. Icare for sick or premature infants. THanks for listening and please helpme any way you feel appropriate even if it is just some words ofencouragment. May God Bless all of you and may he also grant me peaceand courage as I face this disease. Tammy >

[Guest guest]

thanks Beth.

To: Breathe-Support Sent: Sat, November 28, 2009 4:01:26 PMSubject: Re: Tammy

,

Anything can have errors. We're all human, even doctors, lol and everyone makes mistakes. Having your biopsy slides read by a pathologist in a community hospital and having them read by a pathologist in an medical center with specialists in ILD can be very different experiences. That doesn't mean the local guy can't get it right, it just means that the pathologist in a medical center that sees this kind of thing all the time is more likely to pick up subtle differences and finer points that someone less experienced in ILD's might miss.

In addition the pathologist in a university medical center with an ILD department will also often consult face to face with the pulmonologist in charge of the case. They can view the slides together and discuss and argue about what they are seeing. This can lead to much higher rates of accuracy where a diagnosis is concerned.

To use my own experience as an example. I had my biopsy done in June of 06 during my initial hospitalization at Nyack Hospital in Nyack, NY. The biopsy report was very vague, stated that I had an "undetermined variant" of pulmonary fibrosis, possibly UIP or DIP or NSIP. Well that certainly left the field wide open.

When my slides were read at Duke and at Columbia/Cornell in NY they both concurred that I have fibrotic NSIP likely caused by an auto-immune/ connective tissue disorder.

It wasn't so much that the first report was wrong. It was just vague and non-specific and unhelpful. This happens sometimes in community hospitals where they just don't see very much of these diseases. The pathologists are sometimes just not familiar with the subtlties that differentiate one ILD from another. I'm not saying you can't get good care at the local community based level. You can. But when you have a rareish disease it just makes sense to me to get to a place where the doctors are familiar and comfortable with these illnesses.

I hope that makes some sense.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 28, 2009 1:53:03 PMSubject: Re: Tammy

Beth,After reading a couple of posts I am wondering... ; can a biopsy have errors in it. What does a specialist in IPF see in a biopsy that a pathologist doesn't

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Fri, November 27, 2009 8:34:51 AMSubject: Tammy

Tammy,

Now that my head has semi-cleared from the Thanksgiving insanity in my family, I'd like to put my 2 cents worth in here also.

You mentioned possibly going to Denver for another opinion. GO! We've had several members over the last few months who've traveled to National Jewish for evaluations and ALL of them have come away impressed. While I'm certain your doctors have done their level best for you, the problem is they don't know what they don't know. ILD is fairly rare. The average community based pulmo doesn't see that much of it compared to things like emphysema and COPD. The field is changing rapidly and a trip to a university medical center with ILD specialists can only help you in the long run. Given your age, your personal and family history of auto-immune disorders, the fact that you have 4 young children etc. All of this screams for expert consults. Los Angeles is another valid choice, I'm only biased because we've had so many folks recently so happy with National Jewish in Denver.

Also I understand the doctors are anxious to get started treating you. My suggestion would be to resist that until you can get into see the specialists. Treatment with steroids may indeed be the best course of action however once you are on them they will skew test results for a long time to come making sorting out what's going on with you more difficult.

When I was diagnosed in 2006 I was treated with very high doses of solumedrol in the hospital and went home on 100mg of prednisone. I've no regrets about that. My disease was advanced and the treatment saved my life and then stablized me. It did however mask the signs of my dermatomyositis (connective tissue disease) so that I did not get an accurate diagnosis of that for over two and a half years.

Because you are not currently severely ill you have the luxury of pursuing a complete accurate picture of what's going on with you. Go to Denver, or LA or come here to Durham and go to Duke or Chicago to University of Chicago, take all your existing test results, your biopsy slides and gather all the information you can. I promise the effort will serve you well for years to come and will help you continue to be a wife and mom to your family.

I do understand how difficult it is not to panic. Been there, done that and have lived to talk about it. Your life is not over by a long shot. Be kind to yourself, get the rest you need (easier said than done with 4 little ones I know), eat well, exercise etc etc. Be very patient with yourself.

If there's anything I can to help please just give a shout!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: tammy stewart <nicunrs01 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 11:21:04 PMSubject: Re: Re: Newly Diagnosed very scared

Bruce,

Thanks for the response to my initial email. Well the way this all came about was at my annual physical with my doctor I mentioned to her that I have noticed i get short of breath a little easier then I ever used to and she decided to do a CTscan. I guess i should mention that I have had crackles in my lower lobes for at least 4 years and the docs never bothered to investigate why. Ok so back to the CT scan, the results were read that there were changes worriesome of pulmonary fibrosis, so I was referred to a local pulmonologist (omaha< NE) he spent about 5 mins with me and tells me I needed to have a lung biopsy, I then met with the surgeon two days later and was in the OR having my lung biopsy last friday. i got the call yesterday from the surgeon that the pathologist (Dr. Katzenstein from syracuse NY) read it as UIP however there were large areas of increased inflammation that is consistent with a connective tissue disorder. So now I am to

meet with the pulmonologist and surgeon on tuesday to develop a plan of care. I talked to my husband tonight and feel very strongly thAT I need to go to denver or LA and have an eval done at one of the centers of excellence. I know that my pulmonologist here in omaha wants to start me on steriods ASAP and i am not sure if that is the right thing my head is spinning right now and I dont know enough about the disease to know what I should do.. Any thoughts on this subject? i suppose it is also important to mention that I have a history of Rheumatoid arthritis and raynauds phenomenon. Not sure if this plays a role on the type of IPF i have but for some reason I dont have a lot of confidence in what I have been told so far. Do you know much about the denver center? Or the LA clinic?Do i just call them and ask for an appointment of do i need my doctor to suggest it? Sorry I have so many questions but I am so thankful for your support and the kindness of

all the people on this website. Thank you for your time and please let me know what you think. Tammy

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 26, 2009 8:19:13 AMSubject: Re: Newly Diagnosed very scared

TammyWelcome here even though wish you didn't need us. Where are you?We would also be interested in where you were diagnosed and by whom? Ifit was not a Center of Excellence or and ILD center I would stronglyrecommend a second opinion at one and more thorough diagnosis. I'mcurious as to what even led to the diagnosis and biopsy with your oxygensaturation so high. Most of us took much longer for anyone to believe wehad a problem.One of the reasons I especially mention the second opinion at a Centerwith Expertise is the rarity for you to have UIP so young and with noidentified cause. So I would want to be sure a second pathologistspecializing in the disease had seen the biopsy and that possibleunderlying causes from hypersensitivities to connective tissue diseaseshad been thoroughly evaluated.Now beyond diagnosis and good medical care, it sounds like you'refeeling pretty good.

Remember that. Don't dismiss the reality of whatmay happen in the future but don't live it either. Life with IPF can begood and learning to live and make the most of it is what this site isabout.At your age too, I'm sure you'll probably consider a future transplantso you have plenty of time to research and discuss and prepare towardit.>> Hello all as I sit here and write this I imagine everyone of you wrotesomething similiar to this when you were first diagnosis. I am a healthy35 yo mother of 4 beautiful children and was diagnosis last week withIPF. The lung biopsy came back today as UIP which as I understand is theworst kind to have. I am not sure what all this means

except that I amterrified and could use some help in understanding what to expect. Iwould love to hear from some of you and build new friendships withpeople who can relate to the fear I have. As of now my pulmonaryfunction test are the only thing that are abnormal. I sat 98-100% onroom air even with activity. I do get slightly short of breath withphysical activity but continue to go to the gym 5-6days a week and workout. I am also a nurse however my patient population is the neonates. Icare for sick or premature infants. THanks for listening and please helpme any way you feel appropriate even if it is just some words ofencouragment. May God Bless all of you and may he also grant me peaceand courage as I face this disease. Tammy >

[Guest guest]

Terry

It's only as good as the Pathologist. That said they are generally

accurate but you improve that level of accuracy even more with a second

pathologist looking.

Now, the more experience the better. But then the next step forward is

if a Pathologist tied to an ILD center and a Pulmonologist reads it and

communicates face to face with the Pulmonologist. This way the entire

medical history may be considered and the results of CT's and questions

and interactive exchanges may take place. I know in my situation at the

University of Chicago the Pulmonologist had seen the CT's and questioned

what the other Pathologists had said. But when she talked to the

Pathologist there and they talked back and forth, she felt much more

assured.

She could say " but the CT showed " . He coucl say " but there is no sign of

that and this is conclusive " and that kind of talk could take place.

It's all about improving the likelihood of accuracy. Now, that said, its

still never a perfect science.

> >

> > Hello all as I sit here and write this I imagine everyone of you

wrote

> something similiar to this when you were first diagnosis. I am a

healthy

> 35 yo mother of 4 beautiful children and was diagnosis last week with

> IPF. The lung biopsy came back today as UIP which as I understand is

the

> worst kind to have. I am not sure what all this means except that I am

> terrified and could use some help in understanding what to expect. I

> would love to hear from some of you and build new friendships with

> people who can relate to the fear I have. As of now my pulmonary

> function test are the only thing that are abnormal. I sat 98-100% on

> room air even with activity. I do get slightly short of breath with

> physical activity but continue to go to the gym 5-6days a week and

work

> out. I am also a nurse however my patient population is the neonates.

I

> care for sick or premature infants. THanks for listening and please

help

> me any way you feel appropriate even if it is just some words of

> encouragment. May God Bless all of you and may he also grant me peace

> and courage as I face this disease. Tammy

> >

>