Re: Consult at UWMC Seattle

[Guest guest]

i am glad your appointment went well and you received lots of information and can make educated decisions about your care

on another note:

i am beginning to wonder if some of the familial stuff is so because of the enviornment that a family lives in -- it's just a question,

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Consult at UWMC SeattleTo: "Breath Support" <Breathe-Support >Date: Thursday, August 20, 2009, 9:28 AM

I had my consultation at UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC yesterday. He spent a lot of time with me and is taking an aggressive approach. He explained (like most of you already know) that the deadly progression of IPF is a course that can’t be pre-determined:

1) It could continue a path of slow growing or could be slow for a time and then take a rapid decline.

2) 20% of IPF patients respond to medications and his preferred treatment is a combination of medications: Prednisone, Azathioprine, and Acetylcysteine. My pulmonary doctor started me already on these medications; he said my Prednisone intake can be dropped from 40mg to 20mg.

3) 5-10% of IPF patients have pulmonary hypertension or right-sided heart failure, which speeds the course of the disease. To check for that the doctor has ordered an Echocardiography. If this turns up positive, surgery would be performed to implant a ventricular assisted device cable to supply more blood to my heart. I guess I’ll know more about this if I need it.

4) The final treatment is the Lung Transplant; which I am agreeable to. He said we will need to start preparing for this NOW and take a proactive serious approach to it. We have lots of work to do to make sure I am in very good health.

Most of you know the serious danger of GERD (acid reflux). He said 90% of IPF patients who also have GERD, developed IPF as a result of food acid aspirations, (breathing acid into the lungs). He is going to aggressively attack this disease. I was diagnosed 8 years ago for GERD and have been on daily medication (omeprazole) to not much relief. He has ordered a test. It’s a 24-hour esophageal pH test done on an outpatient basis. It will measure the pH or amount of acid that flows into the esophagus from the stomach during a 24-hour period. The equipment used in the esophageal pH test consists of a small probe that is inserted through your nostril and positioned near the lower esophagus. The probe is plugged into a small unit (or monitor) worn on your belt or over your shoulder. It will record the occurrence of symptoms and the times when you eat and lie

down. He said if I have certain amount of reflux during that 24-hour period the medication I’ve been taking isn’t working and I will need the surgery.. The surgical procedure is to remove a portion of the esophagus. I am agreeable to this.

I did a 6-minute walk with Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of stairs and oxygen saturation levels dropped to 80. Did 6-min walk with O2 and oxy sats were up to 92. He ordered oxygen for exertion. He ordered blood tests today (about 6 vials) to check for autoimmune diseases and whatever else..

Dr. Raghu did not have my CT scans from Group Health to review and make his own diagnosis of my stage of IPF. But his finding is Familial Idiopathic Pulmonary Fibrosis. Familial because my brother died from respiratory failure due to IPF; my mom was diagnosed with emphysema in 1982 and put on oxygen and died that same year at age 56. Dr. Raghu said it’s a good possibility it was IPF not emphysema. My dad died of lung cancer at age 76. IPF itself is not known to be genetic but the predisposition of developing it is.

He is very concerned for my children; they are at serious risk of developing IPF. He would like me and my children and sister to participate in a genetic research for Familial IPF at no cost to us. The research specialist, , is in Texas, but the data and blood samples will be collected here and sent to her.

All-in-all I have confidence in Dr. Raghu and his team. He assured me his goal is to do everything he can to give me as normal a life as possible. I know it’s going to be an uphill battle, but I am going try my hardest to make this a pro-active climb, not knowing what’s on the other side.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

I'm glad you got the consultation you were after. I hate to confuse

things any but I have to point out that there are some of those things

you might want to get second opinions on prior to significant procedures

or surgeries. Dr. Raghu often has opinions which vary from those of the

majority of IPF experts.

The prescription of prednisone was expected as he does believe in

prescribing it to all PF patients.

As to PH, I applaud his warnings and encourage everyone to have echos.

However, if an echo does show a possibility, the only way of getting an

accurate reading is through a right heart catheter. One would never

prescribe based simply on the echo. For instance, my last echo showed a

pressure of 47 and my right heart catheter showed it to be 18, well

within the normal range. Dr. Edelman and Dr. Ralph at U of Wash are

considered experts in PH. Now, as to treatment, the implant you

describe is certainly not very common compared to the other treatments.

For instance Dr. Ralph treated 53 PH patients in the past year and only

used it twice. Especially at the lower levels of PH, there are meds

which are approved and have been shown to be effective.

As to the GERD, the statement that 90% of IPF patients have GERD as well

is a number widely supported. The statements as to cause and effect are

not widely supported by other doctors. The study I saw he had conducted

consisted of four patients, although he may have done more since. It

would be more common to say we don't know the relationship. This

certainly seems to be somewhat inconsistent in your case versus the

familial leanings also presented. Again, most would not choose the

surgery for the GERD except as a last resort. So, Dr. Raghu is either

ahead of everyone else or following a path others don't necessarily

agree with at this time. If you've only been on Omeprazole (and you

didn't say what quantity) most would at the least try more aggressive

PPI's and meds first. This might include as much as 80 MG per day of

Nexium as many of us with severe GERD are on or a combination like

Protonix and Reglan which has come into much favor.

The only thing I would say is to remember there are choices and various

doctors might make different recommendations. Dr. Raghu also was a

strong proponent of Actimmune and has been of Perfenidone and not in the

mainstream there either. Some doctors have their own very strong

preferences and they may or may not be correct. For instance, Dr. Lasky

at Tulane is prescribing Enbrel more widely as he's involved in some of

their trials. Just don't let any doctor " play god " and make your

decisions for you. Listen, evaluate, get second opinions if you feel

warranted, then you decide.

>

> I had my consultation at

> UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC

yesterday. He

> spent a lot of time with me and is taking an aggressive approach. He

explained (like most of you already know) that the deadly progression of

> IPF is a course that can’t be pre-determined:

> 1) It could continue a path of slow

> growing or could be slow for a time and then take a rapid decline.

> 2) 20% of IPF patients respond to

> medications and his preferred treatment is a combination of

medications: Prednisone,

> Azathioprine, and Acetylcysteine. My pulmonary doctor started me

already on

> these medications; he said my Prednisone intake can be dropped from

40mg to

> 20mg.

> 3) 5-10% of IPF patients have pulmonary

> hypertension or right-sided heart failure, which speeds the course of

the

> disease. To check for that the doctor

> has ordered an Echocardiography. If

> this turns up positive, surgery would be performed to implant a

ventricular

> assisted device cable to supply more blood to my heart. I guess

I’ll know more

> about this if I need it.

> 4) The

> final treatment is the Lung Transplant; which I am agreeable to. He

said we

> will need to start preparing for this NOW and take a proactive serious

approach

> to it. We have lots of work to do to

> make sure I am in very good health.

> Most of you know the

> serious danger of GERD (acid reflux). He said 90% of IPF patients who

also have

> GERD, developed IPF as a result of food acid aspirations, (breathing

acid into

> the lungs). He is going to aggressively attack this disease. I was

diagnosed 8

> years ago for GERD and have been on daily medication (omeprazole) to

not much

> relief. He has ordered a test. It’s a 24-hour esophageal pH

test done on an

> outpatient basis. It will measure the pH or amount of acid that flows

into the

> esophagus from the stomach during a 24-hour period. The equipment

used in the esophageal pH test

> consists of a small probe that is inserted through your nostril and

positioned

> near the lower esophagus. The probe is plugged into a small unit (or

monitor)

> worn on your belt or over your shoulder. It will record the

occurrence of symptoms and the times when you eat and

> lie down. He said if I have certain

> amount of reflux during that 24-hour period the medication I’ve

been taking

> isn’t working and I will need the surgery. The surgical

procedure is to remove

> a portion of the esophagus. I am agreeable to this.

> I did a 6-minute walk with

> Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of

stairs and

> oxygen saturation levels dropped to 80. Did 6-min walk with O2 and

oxy sats were up to 92. He ordered oxygen for exertion. He ordered

blood tests today (about 6 vials)

> to check for autoimmune diseases and whatever else.

> Dr. Raghu did not have my

> CT scans from Group Health to review and make his own diagnosis of my

stage of

> IPF. But his finding is Familial

> Idiopathic Pulmonary Fibrosis. Familial because my brother died from

respiratory

> failure due to IPF; my mom was diagnosed with emphysema in 1982 and

put on

> oxygen and died that same year at age 56. Dr. Raghu said it’s a

good

> possibility it was IPF not emphysema. My dad died of lung cancer at

age 76. IPF

> itself is not known to be genetic but the predisposition of developing

it is.

> He is very concerned for my

> children; they are at serious risk of developing IPF. He would like

me and my children and sister to

> participate in a genetic research for Familial IPF at no cost to us.

The

> research specialist, , is in Texas, but the data and

blood samples will

> be collected here and sent to her.

> All-in-all I have confidence

> in Dr. Raghu and his team. He assured me his goal is to do everything

he can to

> give me as normal a life as possible. I know it’s going to be

an uphill battle,

> but I am going try my hardest to make this a pro-active climb, not

knowing

> what’s on the other side.

>

> C_53_IPF_5/09

> Washington-the-Evergreen-state

>

[Guest guest]

Hi Joyce,Another interesting factor in the familial vs. environmental aspect in my family is that I also have an adopted brother! The researcher may want to consider testing him too. C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Thursday, August 20, 2009 6:51:48 AMSubject: Re: Consult at UWMC Seattle

i am glad your appointment went well and you received lots of information and can make educated decisions about your care

on another note:

i am beginning to wonder if some of the familial stuff is so because of the enviornment that a family lives in -- it's just a question,

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Consult at UWMC SeattleTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Thursday, August 20, 2009, 9:28 AM

I had my consultation at UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC yesterday. He spent a lot of time with me and is taking an aggressive approach. He explained (like most of you already know) that the deadly progression of IPF is a course that can’t be pre-determined:

1) It could continue a path of slow growing or could be slow for a time and then take a rapid decline.

2) 20% of IPF patients respond to medications and his preferred treatment is a combination of medications: Prednisone, Azathioprine, and Acetylcysteine. My pulmonary doctor started me already on these medications; he said my Prednisone intake can be dropped from 40mg to 20mg.

3) 5-10% of IPF patients have pulmonary hypertension or right-sided heart failure, which speeds the course of the disease. To check for that the doctor has ordered an Echocardiography. If this turns up positive, surgery would be performed to implant a ventricular assisted device cable to supply more blood to my heart. I guess I’ll know more about this if I need it.

4) The final treatment is the Lung Transplant; which I am agreeable to. He said we will need to start preparing for this NOW and take a proactive serious approach to it.. We have lots of work to do to make sure I am in very good health.

Most of you know the serious danger of GERD (acid reflux). He said 90% of IPF patients who also have GERD, developed IPF as a result of food acid aspirations, (breathing acid into the lungs). He is going to aggressively attack this disease. I was diagnosed 8 years ago for GERD and have been on daily medication (omeprazole) to not much relief. He has ordered a test. It’s a 24-hour esophageal pH test done on an outpatient basis. It will measure the pH or amount of acid that flows into the esophagus from the stomach during a 24-hour period. The equipment used in the esophageal pH test consists of a small probe that is inserted through your nostril and positioned near the lower esophagus. The probe is plugged into a small unit (or monitor) worn on your belt or over your shoulder. It will record the occurrence of symptoms and the times when you eat and lie

down. He said if I have certain amount of reflux during that 24-hour period the medication I’ve been taking isn’t working and I will need the surgery.. The surgical procedure is to remove a portion of the esophagus. I am agreeable to this.

I did a 6-minute walk with Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of stairs and oxygen saturation levels dropped to 80. Did 6-min walk with O2 and oxy sats were up to 92. He ordered oxygen for exertion. He ordered blood tests today (about 6 vials) to check for autoimmune diseases and whatever else..

Dr. Raghu did not have my CT scans from Group Health to review and make his own diagnosis of my stage of IPF. But his finding is Familial Idiopathic Pulmonary Fibrosis. Familial because my brother died from respiratory failure due to IPF; my mom was diagnosed with emphysema in 1982 and put on oxygen and died that same year at age 56. Dr. Raghu said it’s a good possibility it was IPF not emphysema. My dad died of lung cancer at age 76. IPF itself is not known to be genetic but the predisposition of developing it is.

He is very concerned for my children; they are at serious risk of developing IPF. He would like me and my children and sister to participate in a genetic research for Familial IPF at no cost to us. The research specialist, , is in Texas, but the data and blood samples will be collected here and sent to her.

All-in-all I have confidence in Dr. Raghu and his team. He assured me his goal is to do everything he can to give me as normal a life as possible. I know it’s going to be an uphill battle, but I am going try my hardest to make this a pro-active climb, not knowing what’s on the other side.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

Thanks Bruce. I understand my role in the decision making process. Dr. Raghu will not be my sole provider in the treatment of my IPF he will work in concert with my pulmonary specialist Dr. Sandblom. He does have 24 years of research experience. Isn't UWMC one of the leading university research centers is the US? How do you base your opinion on Dr. Raghu's differing opinions of the "majority of IPF experts?" Where could I read about that? As for "second opinions or mainstream experts," where and who? I didn't realize there was a correct or incorrect treament plan for this disease. I have been on an increased dosage of ompeprazole from 20 to 60mg and the testing will tell if its helping. He has given me homework to follow a strict diet and eating schedule to help reduce

the reflux. The surger, if elected, will not be decided on a whim.As to the PH results, I plan to discuss treatment options (before deciding on surgery) in detail with him and my pulmo doc if it shows up. C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Thursday, August 20, 2009 7:05:46 AMSubject: Re: Consult at UWMC Seattle

I'm glad you got the consultation you were after. I hate to confuse

things any but I have to point out that there are some of those things

you might want to get second opinions on prior to significant procedures

or surgeries. Dr. Raghu often has opinions which vary from those of the

majority of IPF experts.

The prescription of prednisone was expected as he does believe in

prescribing it to all PF patients.

As to PH, I applaud his warnings and encourage everyone to have echos.

However, if an echo does show a possibility, the only way of getting an

accurate reading is through a right heart catheter. One would never

prescribe based simply on the echo. For instance, my last echo showed a

pressure of 47 and my right heart catheter showed it to be 18, well

within the normal range. Dr. Edelman and Dr. Ralph at U of Wash are

considered experts in PH. Now, as to treatment, the implant you

describe is certainly not very common compared to the other treatments.

For instance Dr. Ralph treated 53 PH patients in the past year and only

used it twice. Especially at the lower levels of PH, there are meds

which are approved and have been shown to be effective.

As to the GERD, the statement that 90% of IPF patients have GERD as well

is a number widely supported. The statements as to cause and effect are

not widely supported by other doctors. The study I saw he had conducted

consisted of four patients, although he may have done more since. It

would be more common to say we don't know the relationship. This

certainly seems to be somewhat inconsistent in your case versus the

familial leanings also presented. Again, most would not choose the

surgery for the GERD except as a last resort. So, Dr. Raghu is either

ahead of everyone else or following a path others don't necessarily

agree with at this time. If you've only been on Omeprazole (and you

didn't say what quantity) most would at the least try more aggressive

PPI's and meds first. This might include as much as 80 MG per day of

Nexium as many of us with severe GERD are on or a combination like

Protonix and Reglan which has come into much favor.

The only thing I would say is to remember there are choices and various

doctors might make different recommendations. Dr. Raghu also was a

strong proponent of Actimmune and has been of Perfenidone and not in the

mainstream there either. Some doctors have their own very strong

preferences and they may or may not be correct. For instance, Dr. Lasky

at Tulane is prescribing Enbrel more widely as he's involved in some of

their trials. Just don't let any doctor "play god" and make your

decisions for you. Listen, evaluate, get second opinions if you feel

warranted, then you decide.

>

> I had my consultation at

> UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC

yesterday. He

> spent a lot of time with me and is taking an aggressive approach. He

explained (like most of you already know) that the deadly progression of

> IPF is a course that can’t be pre-determined:

> 1) It could continue a path of slow

> growing or could be slow for a time and then take a rapid decline..

> 2) 20% of IPF patients respond to

> medications and his preferred treatment is a combination of

medications: Prednisone,

> Azathioprine, and Acetylcysteine. My pulmonary doctor started me

already on

> these medications; he said my Prednisone intake can be dropped from

40mg to

> 20mg.

> 3) 5-10% of IPF patients have pulmonary

> hypertension or right-sided heart failure, which speeds the course of

the

> disease. To check for that the doctor

> has ordered an Echocardiography. If

> this turns up positive, surgery would be performed to implant a

ventricular

> assisted device cable to supply more blood to my heart. I guess

I’ll know more

> about this if I need it.

> 4) The

> final treatment is the Lung Transplant; which I am agreeable to. He

said we

> will need to start preparing for this NOW and take a proactive serious

approach

> to it. We have lots of work to do to

> make sure I am in very good health.

> Most of you know the

> serious danger of GERD (acid reflux). He said 90% of IPF patients who

also have

> GERD, developed IPF as a result of food acid aspirations, (breathing

acid into

> the lungs). He is going to aggressively attack this disease. I was

diagnosed 8

> years ago for GERD and have been on daily medication (omeprazole) to

not much

> relief. He has ordered a test. It’s a 24-hour esophageal pH

test done on an

> outpatient basis. It will measure the pH or amount of acid that flows

into the

> esophagus from the stomach during a 24-hour period. The equipment

used in the esophageal pH test

> consists of a small probe that is inserted through your nostril and

positioned

> near the lower esophagus. The probe is plugged into a small unit (or

monitor)

> worn on your belt or over your shoulder. It will record the

occurrence of symptoms and the times when you eat and

> lie down. He said if I have certain

> amount of reflux during that 24-hour period the medication I’ve

been taking

> isn’t working and I will need the surgery. The surgical

procedure is to remove

> a portion of the esophagus. I am agreeable to this.

> I did a 6-minute walk with

> Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of

stairs and

> oxygen saturation levels dropped to 80. Did 6-min walk with O2 and

oxy sats were up to 92. He ordered oxygen for exertion. He ordered

blood tests today (about 6 vials)

> to check for autoimmune diseases and whatever else.

> Dr. Raghu did not have my

> CT scans from Group Health to review and make his own diagnosis of my

stage of

> IPF. But his finding is Familial

> Idiopathic Pulmonary Fibrosis. Familial because my brother died from

respiratory

> failure due to IPF; my mom was diagnosed with emphysema in 1982 and

put on

> oxygen and died that same year at age 56. Dr. Raghu said it’s a

good

> possibility it was IPF not emphysema. My dad died of lung cancer at

age 76. IPF

> itself is not known to be genetic but the predisposition of developing

it is.

> He is very concerned for my

> children; they are at serious risk of developing IPF. He would like

me and my children and sister to

> participate in a genetic research for Familial IPF at no cost to us.

The

> research specialist, , is in Texas, but the data and

blood samples will

> be collected here and sent to her.

> All-in-all I have confidence

> in Dr. Raghu and his team. He assured me his goal is to do everything

he can to

> give me as normal a life as possible. I know it’s going to be

an uphill battle,

> but I am going try my hardest to make this a pro-active climb, not

knowing

> what’s on the other side..

>

> C_53_IPF_ 5/09

> Washington-the- Evergreen- state

>

[Guest guest]

,

I'm so happy that you are feeling so good about your visit to UWMC and your consult with Dr. Raghu.

Just one word about GERD and pulmonary fibrosis. There definitely appears to be some type of relationship as the vast majority of people with fibrosis also have gerd at least to some extent. Whether it's causal as Dr. Raghu seems to believe is more controversial and there is not universal agreement.

In my case it's likely that my reflux was caused by the very high doses of prednisone I was on immediately after my diagnosis. I have no history of gerd prior to that, no history of any gastro intestinal problems at all. My fibrosis was caused by my connective tissue disease and it appears the treatment caused the gerd.

The important thing is to treat the reflux aggressively since the last thing any of us need is further damage to our fragile lungs from stomach acid. The surgical option that you mention I believe is a Nissen fundoplication. It's always on the table as a possibility for me at Duke. I've been told if my reflux at some point becomes worse they will want me to have it done. It is done on almost all the lung transplant patients at Duke (unless someone flat out refuses) prophylactically to protect the new transplanted lungs. Dr. Raghu takes reflux very seriously and while I don't necessarily agree with his cause/effect assertions I do appreciate his approach to controlling it.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breath Support <Breathe-Support >Sent: Thursday, August 20, 2009 9:28:51 AMSubject: Consult at UWMC Seattle

I had my consultation at UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC yesterday. He spent a lot of time with me and is taking an aggressive approach. He explained (like most of you already know) that the deadly progression of IPF is a course that can’t be pre-determined:

1) It could continue a path of slow growing or could be slow for a time and then take a rapid decline.

2) 20% of IPF patients respond to medications and his preferred treatment is a combination of medications: Prednisone, Azathioprine, and Acetylcysteine. My pulmonary doctor started me already on these medications; he said my Prednisone intake can be dropped from 40mg to 20mg.

3) 5-10% of IPF patients have pulmonary hypertension or right-sided heart failure, which speeds the course of the disease. To check for that the doctor has ordered an Echocardiography. If this turns up positive, surgery would be performed to implant a ventricular assisted device cable to supply more blood to my heart. I guess I’ll know more about this if I need it.

4) The final treatment is the Lung Transplant; which I am agreeable to. He said we will need to start preparing for this NOW and take a proactive serious approach to it. We have lots of work to do to make sure I am in very good health.

Most of you know the serious danger of GERD (acid reflux). He said 90% of IPF patients who also have GERD, developed IPF as a result of food acid aspirations, (breathing acid into the lungs). He is going to aggressively attack this disease. I was diagnosed 8 years ago for GERD and have been on daily medication (omeprazole) to not much relief. He has ordered a test. It’s a 24-hour esophageal pH test done on an outpatient basis. It will measure the pH or amount of acid that flows into the esophagus from the stomach during a 24-hour period. The equipment used in the esophageal pH test consists of a small probe that is inserted through your nostril and positioned near the lower esophagus. The probe is plugged into a small unit (or monitor) worn on your belt or over your shoulder. It will record the occurrence of symptoms and the times when you eat and lie

down. He said if I have certain amount of reflux during that 24-hour period the medication I’ve been taking isn’t working and I will need the surgery.. The surgical procedure is to remove a portion of the esophagus. I am agreeable to this.

I did a 6-minute walk with Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of stairs and oxygen saturation levels dropped to 80. Did 6-min walk with O2 and oxy sats were up to 92. He ordered oxygen for exertion. He ordered blood tests today (about 6 vials) to check for autoimmune diseases and whatever else..

Dr. Raghu did not have my CT scans from Group Health to review and make his own diagnosis of my stage of IPF. But his finding is Familial Idiopathic Pulmonary Fibrosis. Familial because my brother died from respiratory failure due to IPF; my mom was diagnosed with emphysema in 1982 and put on oxygen and died that same year at age 56. Dr. Raghu said it’s a good possibility it was IPF not emphysema. My dad died of lung cancer at age 76. IPF itself is not known to be genetic but the predisposition of developing it is.

He is very concerned for my children; they are at serious risk of developing IPF. He would like me and my children and sister to participate in a genetic research for Familial IPF at no cost to us. The research specialist, , is in Texas, but the data and blood samples will be collected here and sent to her.

All-in-all I have confidence in Dr. Raghu and his team. He assured me his goal is to do everything he can to give me as normal a life as possible. I know it’s going to be an uphill battle, but I am going try my hardest to make this a pro-active climb, not knowing what’s on the other side.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

now that would be interesting, i certainly hope he doesn't have a lung problem, but if he does, then maybe it is enviornmental

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Consult at UWMC SeattleTo: Breathe-Support Date: Thursday, August 20, 2009, 10:37 AM

Hi Joyce,Another interesting factor in the familial vs. environmental aspect in my family is that I also have an adopted brother! The researcher may want to consider testing him too.

C_53_IPF_5/09Washington-the- Evergreen- state

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 20, 2009 6:51:48 AMSubject: Re: Consult at UWMC Seattle

i am glad your appointment went well and you received lots of information and can make educated decisions about your care

on another note:

i am beginning to wonder if some of the familial stuff is so because of the enviornment that a family lives in -- it's just a question,

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Consult at UWMC SeattleTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Thursday, August 20, 2009, 9:28 AM

I had my consultation at UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC yesterday. He spent a lot of time with me and is taking an aggressive approach. He explained (like most of you already know) that the deadly progression of IPF is a course that can’t be pre-determined:

1) It could continue a path of slow growing or could be slow for a time and then take a rapid decline.

2) 20% of IPF patients respond to medications and his preferred treatment is a combination of medications: Prednisone, Azathioprine, and Acetylcysteine. My pulmonary doctor started me already on these medications; he said my Prednisone intake can be dropped from 40mg to 20mg.

3) 5-10% of IPF patients have pulmonary hypertension or right-sided heart failure, which speeds the course of the disease. To check for that the doctor has ordered an Echocardiography. If this turns up positive, surgery would be performed to implant a ventricular assisted device cable to supply more blood to my heart. I guess I’ll know more about this if I need it.

4) The final treatment is the Lung Transplant; which I am agreeable to. He said we will need to start preparing for this NOW and take a proactive serious approach to it.. We have lots of work to do to make sure I am in very good health.

Most of you know the serious danger of GERD (acid reflux). He said 90% of IPF patients who also have GERD, developed IPF as a result of food acid aspirations, (breathing acid into the lungs). He is going to aggressively attack this disease. I was diagnosed 8 years ago for GERD and have been on daily medication (omeprazole) to not much relief. He has ordered a test. It’s a 24-hour esophageal pH test done on an outpatient basis. It will measure the pH or amount of acid that flows into the esophagus from the stomach during a 24-hour period. The equipment used in the esophageal pH test consists of a small probe that is inserted through your nostril and positioned near the lower esophagus. The probe is plugged into a small unit (or monitor) worn on your belt or over your shoulder. It will record the occurrence of symptoms and the times when you eat and lie

down. He said if I have certain amount of reflux during that 24-hour period the medication I’ve been taking isn’t working and I will need the surgery.. The surgical procedure is to remove a portion of the esophagus. I am agreeable to this.

I did a 6-minute walk with Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of stairs and oxygen saturation levels dropped to 80. Did 6-min walk with O2 and oxy sats were up to 92. He ordered oxygen for exertion. He ordered blood tests today (about 6 vials) to check for autoimmune diseases and whatever else..

Dr. Raghu did not have my CT scans from Group Health to review and make his own diagnosis of my stage of IPF. But his finding is Familial Idiopathic Pulmonary Fibrosis. Familial because my brother died from respiratory failure due to IPF; my mom was diagnosed with emphysema in 1982 and put on oxygen and died that same year at age 56. Dr. Raghu said it’s a good possibility it was IPF not emphysema. My dad died of lung cancer at age 76. IPF itself is not known to be genetic but the predisposition of developing it is.

He is very concerned for my children; they are at serious risk of developing IPF. He would like me and my children and sister to participate in a genetic research for Familial IPF at no cost to us. The research specialist, , is in Texas, but the data and blood samples will be collected here and sent to her.

All-in-all I have confidence in Dr. Raghu and his team. He assured me his goal is to do everything he can to give me as normal a life as possible. I know it’s going to be an uphill battle, but I am going try my hardest to make this a pro-active climb, not knowing what’s on the other side.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

There isn't a correct or incorrect. Just some things Dr. Raghu sees

differently than what I've heard from other doctors at other Centers of

Excellence. I haven't heard anyone else make the same types of

statements he has regarding GERD. Everyone else I've read just agrees

90% of us have GERD, but don't establish cause and effect for the most

part. I'd suggest googling. I have looked up many articles by Dr. Raghu

and his GERD study.

As to the PH procedure I picked info from I've also looked at other

doctors treating PH. I would suspect Dr. Raghu would quickly acknowledge

that his procedure isn't being done as much as other things but then

would give you the reasons he thinks its better and an improved way to

go.

As to his opinion on prednisone, it's actually from an old debate he had

with another top IPF doctor. He said prednisone should always be

prescribed. The other said only in specific cases.

The Actimmune and Pirfenidone involvement is available online as well.

He's spoken often publicly about both. He has done so on behalf of

Intermune, the pharmaceutical.

I'm sure in each case Dr. Raghu has sound logic and support for his

recommendations. I've just followed here and elsewhere to understand the

various views of him and others. Every doctor is different. My

rheumatologist would impose many things on me if I'd go along that I

just don't want. Doesn't mean he's a bad doctor. But he'd do a kidney

biopsy. Nephrologist says no.

There are also regional trends. For instance, Dr. Raghu and Dr. King of

UCSF do a lot of collaborating and share many views.

Another example of local and regional preferences. Transtrachael is used

rather frequently by some doctors in some areas, but in my area quickly

dismissed by the doctors, with a prejudice that makes no sense in my

opinion. Another I mentioned. I know several patients prescribed Enbrel

by Dr. Lasky at Tulane. Generally it is for RA, not prescribed by

Pulmonologists and not approved for PF. But he's also very involved with

the clinical trials for Enbrel.

phassociation.org on the two PH doctors at his location.

> >

> > I had my consultation at

> > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC

> yesterday. He

> > spent a lot of time with me and is taking an aggressive approach.

He

> explained (like most of you already know) that the deadly progression

of

> > IPF is a course that can’t be pre-determined:

> > 1) It could continue a path of slow

> > growing or could be slow for a time and then take a rapid decline.

> > 2) 20% of IPF patients respond to

> > medications and his preferred treatment is a combination of

> medications: Prednisone,

> > Azathioprine, and Acetylcysteine. My pulmonary doctor started me

> already on

> > these medications; he said my Prednisone intake can be dropped from

> 40mg to

> > 20mg.

> > 3) 5-10% of IPF patients have pulmonary

> > hypertension or right-sided heart failure, which speeds the course

of

> the

> > disease. To check for that the doctor

> > has ordered an Echocardiography. If

> > this turns up positive, surgery would be performed to implant a

> ventricular

> > assisted device cable to supply more blood to my heart. I guess

> I’ll know more

> > about this if I need it.

> > 4) The

> > final treatment is the Lung Transplant; which I am agreeable to. He

> said we

> > will need to start preparing for this NOW and take a proactive

serious

> approach

> > to it. We have lots of work to do to

> > make sure I am in very good health.

> > Most of you know the

> > serious danger of GERD (acid reflux). He said 90% of IPF patients

who

> also have

> > GERD, developed IPF as a result of food acid aspirations, (breathing

> acid into

> > the lungs). He is going to aggressively attack this disease. I was

> diagnosed 8

> > years ago for GERD and have been on daily medication (omeprazole) to

> not much

> > relief. He has ordered a test. It’s a 24-hour esophageal

pH

> test done on an

> > outpatient basis. It will measure the pH or amount of acid that

flows

> into the

> > esophagus from the stomach during a 24-hour period. The equipment

> used in the esophageal pH test

> > consists of a small probe that is inserted through your nostril and

> positioned

> > near the lower esophagus. The probe is plugged into a small unit (or

> monitor)

> > worn on your belt or over your shoulder. It will record the

> occurrence of symptoms and the times when you eat and

> > lie down. He said if I have certain

> > amount of reflux during that 24-hour period the medication

I’ve

> been taking

> > isn’t working and I will need the surgery. The surgical

> procedure is to remove

> > a portion of the esophagus. I am agreeable to this.

> > I did a 6-minute walk with

> > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of

> stairs and

> > oxygen saturation levels dropped to 80. Did 6-min walk with O2 and

> oxy sats were up to 92. He ordered oxygen for exertion. He ordered

> blood tests today (about 6 vials)

> > to check for autoimmune diseases and whatever else.

> > Dr. Raghu did not have my

> > CT scans from Group Health to review and make his own diagnosis of

my

> stage of

> > IPF. But his finding is Familial

> > Idiopathic Pulmonary Fibrosis. Familial because my brother died from

> respiratory

> > failure due to IPF; my mom was diagnosed with emphysema in 1982 and

> put on

> > oxygen and died that same year at age 56. Dr. Raghu said

it’s a

> good

> > possibility it was IPF not emphysema.. My dad died of lung cancer at

> age 76. IPF

> > itself is not known to be genetic but the predisposition of

developing

> it is.

> > He is very concerned for my

> > children; they are at serious risk of developing IPF. He would like

> me and my children and sister to

> > participate in a genetic research for Familial IPF at no cost to us.

> The

> > research specialist, , is in Texas, but the data and

> blood samples will

> > be collected here and sent to her.

> > All-in-all I have confidence

> > in Dr. Raghu and his team. He assured me his goal is to do

everything

> he can to

> > give me as normal a life as possible. I know it’s going

to be

> an uphill battle,

> > but I am going try my hardest to make this a pro-active climb, not

> knowing

> > what’s on the other side.

> >

> > C_53_IPF_ 5/09

> > Washington-the- Evergreen- state

> >

>

[Guest guest]

Bruce,

I wish this disease had clear-cut answers or that if majority rules at the center of excellence that must be right. But it's NOT. There aren't enough conclusive findings to pinpoint a “mainstream†or typical treatment

plan for IPF or its underlying causes. I do agree with you that ALL doctors are opinions differ. Every doctor is opinionated! They are

required to make judgment calls based on their knowledge, expertise, and the severity of their patient's disease.

We are all at the mercy of doctors and research experts who specialize in lung

disease/IPF. I believe

most of us try to choose our doctor’s as carefully as we can based on their

field of expertise in the area of our disease, as well as personal qualities. I’m

willing to put my trust in someone who has devoted 24 years of research and

practice to Interstitial Lung Disease and a University Medical research center

that is ranked #12 in the U.S. Time is of the essence for me, who are we

kidding, it is a seriously fatal illness. There aren’t enough doctor’s in this

field to even shop around for..

My e-mail was a brief summation of my 2-1/2 hour personalized

consultation with Dr. Raghu and his team.

I expect my treatment plan to be different from someone else, because of

the stage I’m at, the age I’m at, (only 53), and the fact that I want the lung

transplant if it’s an option for me. They

are not going to put new lungs into a person still diseased with GERD; so if

surgery is the only means to rid me of GERD and make me healthy enough for new

lungs, then that’s what I will most likely choose. I need to be ready and as

healthy as soon as possible for transplant.

In light of the unpredictability of this disease taking

a rapid decline and other factor’s involved in my disease process, Dr. Raghu’s

aggressive (maybe radical) treatment makes sense for me and gives me the hope I

was looking for.

C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Thursday, August 20, 2009 11:13:12 AMSubject: Re: Consult at UWMC Seattle

There isn't a correct or incorrect. Just some things Dr. Raghu sees

differently than what I've heard from other doctors at other Centers of

Excellence. I haven't heard anyone else make the same types of

statements he has regarding GERD. Everyone else I've read just agrees

90% of us have GERD, but don't establish cause and effect for the most

part. I'd suggest googling. I have looked up many articles by Dr. Raghu

and his GERD study.

As to the PH procedure I picked info from I've also looked at other

doctors treating PH. I would suspect Dr. Raghu would quickly acknowledge

that his procedure isn't being done as much as other things but then

would give you the reasons he thinks its better and an improved way to

go.

As to his opinion on prednisone, it's actually from an old debate he had

with another top IPF doctor. He said prednisone should always be

prescribed. The other said only in specific cases.

The Actimmune and Pirfenidone involvement is available online as well.

He's spoken often publicly about both. He has done so on behalf of

Intermune, the pharmaceutical.

I'm sure in each case Dr. Raghu has sound logic and support for his

recommendations. I've just followed here and elsewhere to understand the

various views of him and others. Every doctor is different. My

rheumatologist would impose many things on me if I'd go along that I

just don't want. Doesn't mean he's a bad doctor. But he'd do a kidney

biopsy. Nephrologist says no.

There are also regional trends. For instance, Dr. Raghu and Dr. King of

UCSF do a lot of collaborating and share many views.

Another example of local and regional preferences. Transtrachael is used

rather frequently by some doctors in some areas, but in my area quickly

dismissed by the doctors, with a prejudice that makes no sense in my

opinion. Another I mentioned. I know several patients prescribed Enbrel

by Dr. Lasky at Tulane. Generally it is for RA, not prescribed by

Pulmonologists and not approved for PF. But he's also very involved with

the clinical trials for Enbrel.

phassociation. org on the two PH doctors at his location.

> >

> > I had my consultation at

> > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC

> yesterday. He

> > spent a lot of time with me and is taking an aggressive approach.

He

> explained (like most of you already know) that the deadly progression

of

> > IPF is a course that can’t be pre-determined:

> > 1) It could continue a path of slow

> > growing or could be slow for a time and then take a rapid decline.

> > 2) 20% of IPF patients respond to

> > medications and his preferred treatment is a combination of

> medications: Prednisone,

> > Azathioprine, and Acetylcysteine. My pulmonary doctor started me

> already on

> > these medications; he said my Prednisone intake can be dropped from

> 40mg to

> > 20mg.

> > 3) 5-10% of IPF patients have pulmonary

> > hypertension or right-sided heart failure, which speeds the course

of

> the

> > disease.. To check for that the doctor

> > has ordered an Echocardiography. If

> > this turns up positive, surgery would be performed to implant a

> ventricular

> > assisted device cable to supply more blood to my heart. I guess

> I’ll know more

> > about this if I need it.

> > 4) The

> > final treatment is the Lung Transplant; which I am agreeable to. He

> said we

> > will need to start preparing for this NOW and take a proactive

serious

> approach

> > to it. We have lots of work to do to

> > make sure I am in very good health.

> > Most of you know the

> > serious danger of GERD (acid reflux). He said 90% of IPF patients

who

> also have

> > GERD, developed IPF as a result of food acid aspirations, (breathing

> acid into

> > the lungs). He is going to aggressively attack this disease. I was

> diagnosed 8

> > years ago for GERD and have been on daily medication (omeprazole) to

> not much

> > relief. He has ordered a test. It’s a 24-hour esophageal

pH

> test done on an

> > outpatient basis. It will measure the pH or amount of acid that

flows

> into the

> > esophagus from the stomach during a 24-hour period. The equipment

> used in the esophageal pH test

> > consists of a small probe that is inserted through your nostril and

> positioned

> > near the lower esophagus. The probe is plugged into a small unit (or

> monitor)

> > worn on your belt or over your shoulder. It will record the

> occurrence of symptoms and the times when you eat and

> > lie down. He said if I have certain

> > amount of reflux during that 24-hour period the medication

I’ve

> been taking

> > isn’t working and I will need the surgery. The surgical

> procedure is to remove

> > a portion of the esophagus. I am agreeable to this.

> > I did a 6-minute walk with

> > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of

> stairs and

> > oxygen saturation levels dropped to 80. Did 6-min walk with O2 and

> oxy sats were up to 92. He ordered oxygen for exertion. He ordered

> blood tests today (about 6 vials)

> > to check for autoimmune diseases and whatever else.

> > Dr. Raghu did not have my

> > CT scans from Group Health to review and make his own diagnosis of

my

> stage of

> > IPF. But his finding is Familial

> > Idiopathic Pulmonary Fibrosis. Familial because my brother died from

> respiratory

> > failure due to IPF; my mom was diagnosed with emphysema in 1982 and

> put on

> > oxygen and died that same year at age 56. Dr.. Raghu said

it’s a

> good

> > possibility it was IPF not emphysema.. My dad died of lung cancer at

> age 76. IPF

> > itself is not known to be genetic but the predisposition of

developing

> it is.

> > He is very concerned for my

> > children; they are at serious risk of developing IPF. He would like

> me and my children and sister to

> > participate in a genetic research for Familial IPF at no cost to us.

> The

> > research specialist, , is in Texas, but the data and

> blood samples will

> > be collected here and sent to her.

> > All-in-all I have confidence

> > in Dr. Raghu and his team. He assured me his goal is to do

everything

> he can to

> > give me as normal a life as possible. I know it’s going

to be

> an uphill battle,

> > but I am going try my hardest to make this a pro-active climb, not

> knowing

> > what’s on the other side.

> >

> > C_53_IPF_ 5/09

> > Washington-the- Evergreen- state

> >

>

[Guest guest]

I never claimed any of the opinions were the best. I know of a doctor in

Texas who has lost his license in two other states and has to pay a

supervisor from the State to oversee his operation in Texas but who has

treated someone I know who credits him with reversing 3/4 of her PF.

Fact is she's much better and no one else had answers. I don't know.

But, I'm glad for her. Can't say I didn't consider at least going and

talking to him. And he's not even reputable, but you listen to some of

his patients and it makes you think.

If you're comfortable with the choices you're making then thats all I'd

want anyone to be. As to majority or anything else, nothing rules except

our individual choices. I know many people who see Dr. Raghu and are

very satisfied. Now, I personally do believe strongly in second opinions

before any surgical procedure and I believe in familiarization of all

options available.

As to putting new lungs into persons with GERD, I'm sorry but they do

that all the time. They have to because 90% of those with PF do have

GERD and a lot of COPD patients do as well. Do they attempt to manage it

before? Of course. Do they often find out during the surgery that the

GERD they thought was managed wasn't? Oh yes. As someone with severe

GERD and who has been getting it treated long before the PF diagnosis,

does it concern me. Absolutely. I don't know today whether its managed

or not because the shape my esophagus is in they don't want to put

anything back down it.

We all just have to make choices. It's not just Dr. Raghu I wouldn't let

make them for me. I wouldn't let any doctor. I didn't let the University

of Chicago's doctors do that either. Nor UTSW. And they are both also

Centers of Excellence. I just listen and then understand their advice

and put it in the context of what I do know about myself. You did say

one thing extremely important and that is your personal comfort with an

aggressive, even radical approach. You're certainly in the ideal mindset

for clinical trials and agressive approaches. Others of us wouldn't be

at all. My case, there are certain clinical trials I would not have

considered and there was one I even pursued, but ultimately wasn't

eligible for based on additional tests and opinions.

Stating that Dr. Raghu's approaches aren't those that many others take

is not saying they are better or worse. I'm sure he knows that better

than anyone else. I remember reading the one debate he was involved in

with another expert IPF doctor over prednisone and thinking how we'd all

benefit just to hear or be able to read the contradictory opinions of

the doctors on all the issues. Generally they debate in private and they

individually advise patients. But I'd love to read some of them debating

VATS, Transtrachael, the validity of echocardiogram results, PH

treatments, Transplants, GERD and other topics.

> > >

> > > I had my consultation at

> > > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC

> > yesterday. He

> > > spent a lot of time with me and is taking an aggressive approach.

> He

> > explained (like most of you already know) that the deadly

progression

> of

> > > IPF is a course that can’t be

pre-determined:

> > > 1) It could continue a path of slow

> > > growing or could be slow for a time and then take a rapid decline.

> > > 2) 20% of IPF patients respond to

> > > medications and his preferred treatment is a combination of

> > medications: Prednisone,

> > > Azathioprine, and Acetylcysteine. My pulmonary doctor started me

> > already on

> > > these medications; he said my Prednisone intake can be dropped

from

> > 40mg to

> > > 20mg.

> > > 3) 5-10% of IPF patients have pulmonary

> > > hypertension or right-sided heart failure, which speeds the course

> of

> > the

> > > disease. To check for that the doctor

> > > has ordered an Echocardiography. If

> > > this turns up positive, surgery would be performed to implant a

> > ventricular

> > > assisted device cable to supply more blood to my heart. I guess

> > I’ll know more

> > > about this if I need it.

> > > 4) The

> > > final treatment is the Lung Transplant; which I am agreeable to.

He

> > said we

> > > will need to start preparing for this NOW and take a proactive

> serious

> > approach

> > > to it. We have lots of work to do to

> > > make sure I am in very good health.

> > > Most of you know the

> > > serious danger of GERD (acid reflux). He said 90% of IPF patients

> who

> > also have

> > > GERD, developed IPF as a result of food acid aspirations,

(breathing

> > acid into

> > > the lungs). He is going to aggressively attack this disease. I was

> > diagnosed 8

> > > years ago for GERD and have been on daily medication (omeprazole)

to

> > not much

> > > relief. He has ordered a test. It’s a

24-hour esophageal

> pH

> > test done on an

> > > outpatient basis. It will measure the pH or amount of acid that

> flows

> > into the

> > > esophagus from the stomach during a 24-hour period. The equipment

> > used in the esophageal pH test

> > > consists of a small probe that is inserted through your nostril

and

> > positioned

> > > near the lower esophagus. The probe is plugged into a small unit

(or

> > monitor)

> > > worn on your belt or over your shoulder. It will record the

> > occurrence of symptoms and the times when you eat and

> > > lie down. He said if I have certain

> > > amount of reflux during that 24-hour period the medication

> I’ve

> > been taking

> > > isn’t working and I will need the

surgery. The surgical

> > procedure is to remove

> > > a portion of the esophagus. I am agreeable to this..

> > > I did a 6-minute walk with

> > > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights

of

> > stairs and

> > > oxygen saturation levels dropped to 80. Did 6-min walk with O2

and

> > oxy sats were up to 92. He ordered oxygen for exertion. He ordered

> > blood tests today (about 6 vials)

> > > to check for autoimmune diseases and whatever else.

> > > Dr.. Raghu did not have my

> > > CT scans from Group Health to review and make his own diagnosis of

> my

> > stage of

> > > IPF. But his finding is Familial

> > > Idiopathic Pulmonary Fibrosis. Familial because my brother died

from

> > respiratory

> > > failure due to IPF; my mom was diagnosed with emphysema in 1982

and

> > put on

> > > oxygen and died that same year at age 56. Dr. Raghu said

> it’s a

> > good

> > > possibility it was IPF not emphysema.. My dad died of lung cancer

at

> > age 76. IPF

> > > itself is not known to be genetic but the predisposition of

> developing

> > it is.

> > > He is very concerned for my

> > > children; they are at serious risk of developing IPF. He would

like

> > me and my children and sister to

> > > participate in a genetic research for Familial IPF at no cost to

us.

> > The

> > > research specialist, , is in Texas, but the data

and

> > blood samples will

> > > be collected here and sent to her.

> > > All-in-all I have confidence

> > > in Dr. Raghu and his team. He assured me his goal is to do

> everything

> > he can to

> > > give me as normal a life as possible. I know

it’s going

> to be

> > an uphill battle,

> > > but I am going try my hardest to make this a pro-active climb, not

> > knowing

> > > what’s on the other side.

> > >

> > > C_53_IPF_ 5/09

> > > Washington-the- Evergreen- state

> > >

> >

>

[Guest guest]

i am glad that you feel comfortable with your doc

even at Penn, there is concern about giving you a new set of lungs and whether or not you have gerd

no one said anything to me about surgery for gerd, but after 2 upper GI's , radiology says i don't have it

it would be a shame to get new lungs and have gerd ruin them

the way you described how dr. R talked about the progression of the disease is the way dr A talks about

you can be stable for a long time

you can be on a gradual decline for a long time

you can have a sudden change downward

i wish i could draw his are movements on the internet as he describes this

there is no way to predict

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Consult at UWMC SeattleTo: Breathe-Support Date: Thursday, August 20, 2009, 8:28 PM

Bruce,

I wish this disease had clear-cut answers or that if majority rules at the center of excellence that must be right. But it's NOT. There aren't enough conclusive findings to pinpoint a “mainstream†or typical treatment plan for IPF or its underlying causes. I do agree with you that ALL doctors are opinions differ. Every doctor is opinionated! They are required to make judgment calls based on their knowledge, expertise, and the severity of their patient's disease.

We are all at the mercy of doctors and research experts who specialize in lung disease/IPF. I believe most of us try to choose our doctor’s as carefully as we can based on their field of expertise in the area of our disease, as well as personal qualities. I’m willing to put my trust in someone who has devoted 24 years of research and practice to Interstitial Lung Disease and a University Medical research center that is ranked #12 in the U.S. Time is of the essence for me, who are we kidding, it is a seriously fatal illness. There aren’t enough doctor’s in this field to even shop around for..

My e-mail was a brief summation of my 2-1/2 hour personalized consultation with Dr. Raghu and his team. I expect my treatment plan to be different from someone else, because of the stage I’m at, the age I’m at, (only 53), and the fact that I want the lung transplant if it’s an option for me. They are not going to put new lungs into a person still diseased with GERD; so if surgery is the only means to rid me of GERD and make me healthy enough for new lungs, then that’s what I will most likely choose. I need to be ready and as healthy as soon as possible for transplant. In light of the unpredictability of this disease taking a rapid decline and other factor’s involved in my disease process, Dr. Raghu’s aggressive (maybe radical) treatment makes sense for me and gives me the hope I was looking for.

C_53_IPF_5/09Washington-the- Evergreen- state

From: brucemoreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 20, 2009 11:13:12 AMSubject: Re: Consult at UWMC Seattle

There isn't a correct or incorrect. Just some things Dr. Raghu seesdifferently than what I've heard from other doctors at other Centers ofExcellence. I haven't heard anyone else make the same types ofstatements he has regarding GERD. Everyone else I've read just agrees90% of us have GERD, but don't establish cause and effect for the mostpart. I'd suggest googling. I have looked up many articles by Dr. Raghuand his GERD study.As to the PH procedure I picked info from I've also looked at otherdoctors treating PH. I would suspect Dr. Raghu would quickly acknowledgethat his procedure isn't being done as much as other things but thenwould give you the reasons he thinks its better and an improved way togo.As to his opinion on prednisone, it's actually from an old debate he hadwith another top IPF doctor. He said prednisone should always beprescribed. The other said only in

specific cases.The Actimmune and Pirfenidone involvement is available online as well.He's spoken often publicly about both. He has done so on behalf ofIntermune, the pharmaceutical.I'm sure in each case Dr. Raghu has sound logic and support for hisrecommendations. I've just followed here and elsewhere to understand thevarious views of him and others. Every doctor is different. Myrheumatologist would impose many things on me if I'd go along that Ijust don't want. Doesn't mean he's a bad doctor. But he'd do a kidneybiopsy. Nephrologist says no.There are also regional trends. For instance, Dr. Raghu and Dr. King ofUCSF do a lot of collaborating and share many views.Another example of local and regional preferences. Transtrachael is usedrather frequently by some doctors in some areas, but in my area quicklydismissed by the doctors, with a prejudice that makes no sense in myopinion.

Another I mentioned. I know several patients prescribed Enbrelby Dr. Lasky at Tulane. Generally it is for RA, not prescribed byPulmonologists and not approved for PF. But he's also very involved withthe clinical trials for Enbrel.phassociation. org on the two PH doctors at his location.> >> > I had my consultation at> > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC> yesterday. He> > spent a lot of time with me and is taking an aggressive approach. He> explained (like most of you already know) that the deadly progressionof> > IPF is a course that can’t be pre-determined:> > 1) It could continue a path

of slow> > growing or could be slow for a time and then take a rapid decline.> > 2) 20% of IPF patients respond to> > medications and his preferred treatment is a combination of> medications: Prednisone,> > Azathioprine, and Acetylcysteine. My pulmonary doctor started me> already on> > these medications; he said my Prednisone intake can be dropped from> 40mg to> > 20mg.> > 3) 5-10% of IPF patients have pulmonary> > hypertension or right-sided heart failure, which speeds the courseof> the> > disease.. To check for that the doctor> > has ordered an Echocardiography. If> > this turns up positive, surgery would be performed to implant a> ventricular> > assisted device cable to supply more blood to my heart. I guess> I’ll know more> > about this if I need it.>

> 4) The> > final treatment is the Lung Transplant; which I am agreeable to. He> said we> > will need to start preparing for this NOW and take a proactiveserious> approach> > to it. We have lots of work to do to> > make sure I am in very good health.> > Most of you know the> > serious danger of GERD (acid reflux). He said 90% of IPF patientswho> also have> > GERD, developed IPF as a result of food acid aspirations, (breathing> acid into> > the lungs). He is going to aggressively attack this disease. I was> diagnosed 8> > years ago for GERD and have been on daily medication (omeprazole) to> not much> > relief. He has ordered a test. It’s a 24-hour esophagealpH> test done on an> > outpatient basis. It will measure the pH or amount of acid thatflows> into

the> > esophagus from the stomach during a 24-hour period. The equipment> used in the esophageal pH test> > consists of a small probe that is inserted through your nostril and> positioned> > near the lower esophagus. The probe is plugged into a small unit (or> monitor)> > worn on your belt or over your shoulder. It will record the> occurrence of symptoms and the times when you eat and> > lie down. He said if I have certain> > amount of reflux during that 24-hour period the medicationI’ve> been taking> > isn’t working and I will need the surgery. The surgical> procedure is to remove> > a portion of the esophagus. I am agreeable to this.> > I did a 6-minute walk with> > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of> stairs and> > oxygen

saturation levels dropped to 80. Did 6-min walk with O2 and> oxy sats were up to 92. He ordered oxygen for exertion. He ordered> blood tests today (about 6 vials)> > to check for autoimmune diseases and whatever else.> > Dr. Raghu did not have my> > CT scans from Group Health to review and make his own diagnosis ofmy> stage of> > IPF. But his finding is Familial> > Idiopathic Pulmonary Fibrosis. Familial because my brother died from> respiratory> > failure due to IPF; my mom was diagnosed with emphysema in 1982 and> put on> > oxygen and died that same year at age 56. Dr.. Raghu saidit’s a> good> > possibility it was IPF not emphysema.. My dad died of lung cancer at> age 76. IPF> > itself is not known to be genetic but the predisposition ofdeveloping> it is.> > He is very

concerned for my> > children; they are at serious risk of developing IPF. He would like> me and my children and sister to> > participate in a genetic research for Familial IPF at no cost to us.> The> > research specialist, , is in Texas, but the data and> blood samples will> > be collected here and sent to her.> > All-in-all I have confidence> > in Dr. Raghu and his team. He assured me his goal is to doeverything> he can to> > give me as normal a life as possible. I know it’s goingto be> an uphill battle,> > but I am going try my hardest to make this a pro-active climb, not> knowing> > what’s on the other side.> >> > C_53_IPF_ 5/09> > Washington-the- Evergreen- state>

>>

[Guest guest]

I do have an appointment (2nd opinion) with a Gastroenterologist, Dr. Beck, to also evaluate my GERD. I will still be seeing my pulmo doc, Dr.. Sandblom, who has to approve and place any orders given by Dr. Raghu and I will also discuss each doctor's plan with the other and listen to my options. Dr. Sandblom is not nearly as aggressive as Dr. Raghu, so it should be a good balance. Ultimately, I of course, make the final decision. I don't plan on "letting" the doctor make choices for me. Obviously, Dr. Raghu has devoted his life work to this disease and has seen results, and feels he knows what works and wants to make it happen as quickly as possible. So, he puts his plan into action, but at

the end of day, I still have to say yes, and show up for treatment or surgery. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Thursday, August 20, 2009 8:40:55 PMSubject: Re: Consult at UWMC Seattle

I never claimed any of the opinions were the best. I know of a doctor in

Texas who has lost his license in two other states and has to pay a

supervisor from the State to oversee his operation in Texas but who has

treated someone I know who credits him with reversing 3/4 of her PF.

Fact is she's much better and no one else had answers. I don't know.

But, I'm glad for her. Can't say I didn't consider at least going and

talking to him. And he's not even reputable, but you listen to some of

his patients and it makes you think.

If you're comfortable with the choices you're making then thats all I'd

want anyone to be. As to majority or anything else, nothing rules except

our individual choices. I know many people who see Dr. Raghu and are

very satisfied. Now, I personally do believe strongly in second opinions

before any surgical procedure and I believe in familiarization of all

options available.

As to putting new lungs into persons with GERD, I'm sorry but they do

that all the time.. They have to because 90% of those with PF do have

GERD and a lot of COPD patients do as well. Do they attempt to manage it

before? Of course. Do they often find out during the surgery that the

GERD they thought was managed wasn't? Oh yes. As someone with severe

GERD and who has been getting it treated long before the PF diagnosis,

does it concern me. Absolutely. I don't know today whether its managed

or not because the shape my esophagus is in they don't want to put

anything back down it.

We all just have to make choices. It's not just Dr. Raghu I wouldn't let

make them for me. I wouldn't let any doctor. I didn't let the University

of Chicago's doctors do that either. Nor UTSW. And they are both also

Centers of Excellence. I just listen and then understand their advice

and put it in the context of what I do know about myself. You did say

one thing extremely important and that is your personal comfort with an

aggressive, even radical approach. You're certainly in the ideal mindset

for clinical trials and agressive approaches. Others of us wouldn't be

at all. My case, there are certain clinical trials I would not have

considered and there was one I even pursued, but ultimately wasn't

eligible for based on additional tests and opinions.

Stating that Dr. Raghu's approaches aren't those that many others take

is not saying they are better or worse. I'm sure he knows that better

than anyone else. I remember reading the one debate he was involved in

with another expert IPF doctor over prednisone and thinking how we'd all

benefit just to hear or be able to read the contradictory opinions of

the doctors on all the issues. Generally they debate in private and they

individually advise patients. But I'd love to read some of them debating

VATS, Transtrachael, the validity of echocardiogram results, PH

treatments, Transplants, GERD and other topics.

> > >

> > > I had my consultation at

> > > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC

> > yesterday. He

> > > spent a lot of time with me and is taking an aggressive approach.

> He

> > explained (like most of you already know) that the deadly

progression

> of

> > > IPF is a course that can’t be

pre-determined:

> > > 1) It could continue a path of slow

> > > growing or could be slow for a time and then take a rapid decline.

> > > 2) 20% of IPF patients respond to

> > > medications and his preferred treatment is a combination of

> > medications: Prednisone,

> > > Azathioprine, and Acetylcysteine. My pulmonary doctor started me

> > already on

> > > these medications; he said my Prednisone intake can be dropped

from

> > 40mg to

> > > 20mg.

> > > 3) 5-10% of IPF patients have pulmonary

> > > hypertension or right-sided heart failure, which speeds the course

> of

> > the

> > > disease. To check for that the doctor

> > > has ordered an Echocardiography. If

> > > this turns up positive, surgery would be performed to implant a

> > ventricular

> > > assisted device cable to supply more blood to my heart. I guess

> > I’ll know more

> > > about this if I need it.

> > > 4) The

> > > final treatment is the Lung Transplant; which I am agreeable to.

He

> > said we

> > > will need to start preparing for this NOW and take a proactive

> serious

> > approach

> > > to it. We have lots of work to do to

> > > make sure I am in very good health.

> > > Most of you know the

> > > serious danger of GERD (acid reflux). He said 90% of IPF patients

> who

> > also have

> > > GERD, developed IPF as a result of food acid aspirations,

(breathing

> > acid into

> > > the lungs). He is going to aggressively attack this disease. I was

> > diagnosed 8

> > > years ago for GERD and have been on daily medication (omeprazole)

to

> > not much

> > > relief. He has ordered a test. It’s a

24-hour esophageal

> pH

> > test done on an

> > > outpatient basis. It will measure the pH or amount of acid that

> flows

> > into the

> > > esophagus from the stomach during a 24-hour period. The equipment

> > used in the esophageal pH test

> > > consists of a small probe that is inserted through your nostril

and

> > positioned

> > > near the lower esophagus. The probe is plugged into a small unit

(or

> > monitor)

> > > worn on your belt or over your shoulder. It will record the

> > occurrence of symptoms and the times when you eat and

> > > lie down. He said if I have certain

> > > amount of reflux during that 24-hour period the medication

> I’ve

> > been taking

> > > isn’t working and I will need the

surgery. The surgical

> > procedure is to remove

> > > a portion of the esophagus. I am agreeable to this..

> > > I did a 6-minute walk with

> > > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights

of

> > stairs and

> > > oxygen saturation levels dropped to 80. Did 6-min walk with O2

and

> > oxy sats were up to 92. He ordered oxygen for exertion. He ordered

> > blood tests today (about 6 vials)

> > > to check for autoimmune diseases and whatever else.

> > > Dr.. Raghu did not have my

> > > CT scans from Group Health to review and make his own diagnosis of

> my

> > stage of

> > > IPF. But his finding is Familial

> > > Idiopathic Pulmonary Fibrosis. Familial because my brother died

from

> > respiratory

> > > failure due to IPF; my mom was diagnosed with emphysema in 1982

and

> > put on

> > > oxygen and died that same year at age 56. Dr. Raghu said

> it’s a

> > good

> > > possibility it was IPF not emphysema.. My dad died of lung cancer

at

> > age 76. IPF

> > > itself is not known to be genetic but the predisposition of

> developing

> > it is.

> > > He is very concerned for my

> > > children; they are at serious risk of developing IPF. He would

like

> > me and my children and sister to

> > > participate in a genetic research for Familial IPF at no cost to

us.

> > The

> > > research specialist, , is in Texas, but the data

and

> > blood samples will

> > > be collected here and sent to her.

> > > All-in-all I have confidence

> > > in Dr. Raghu and his team. He assured me his goal is to do

> everything

> > he can to

> > > give me as normal a life as possible. I know

it’s going

> to be

> > an uphill battle,

> > > but I am going try my hardest to make this a pro-active climb, not

> > knowing

> > > what’s on the other side.

> > >

> > > C_53_IPF_ 5/09

> > > Washington-the- Evergreen- state

> > >

> >

>

[Guest guest]

Thanks Joyce. I've lived with GERD for almost 8 years now and had no idea what it might be doing to my lungs. I know the experts don't know for sure if it causes IPF, but at least they want to do something about it. I felt positive about Dr. Raghu's approach because it meshes with my personality, I'm a GET-R-DONE type of gal. I'm not good at sitting around waiting; because my waiting turns into worry and anxiety until something is done! But I also know I need to consult my pulmo doc, the GI doc, and do some homework on my own. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Friday, August 21, 2009 6:04:35 AMSubject: Re: Consult at UWMC Seattle

i am glad that you feel comfortable with your doc

even at Penn, there is concern about giving you a new set of lungs and whether or not you have gerd

no one said anything to me about surgery for gerd, but after 2 upper GI's , radiology says i don't have it

it would be a shame to get new lungs and have gerd ruin them

the way you described how dr. R talked about the progression of the disease is the way dr A talks about

you can be stable for a long time

you can be on a gradual decline for a long time

you can have a sudden change downward

i wish i could draw his are movements on the internet as he describes this

there is no way to predict

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Consult at UWMC SeattleTo: Breathe-Support@ yahoogroups. comDate: Thursday, August 20, 2009, 8:28 PM

Bruce,

I wish this disease had clear-cut answers or that if majority rules at the center of excellence that must be right. But it's NOT. There aren't enough conclusive findings to pinpoint a “mainstream†or typical treatment plan for IPF or its underlying causes. I do agree with you that ALL doctors are opinions differ.. Every doctor is opinionated! They are required to make judgment calls based on their knowledge, expertise, and the severity of their patient's disease.

We are all at the mercy of doctors and research experts who specialize in lung disease/IPF. I believe most of us try to choose our doctor’s as carefully as we can based on their field of expertise in the area of our disease, as well as personal qualities. I’m willing to put my trust in someone who has devoted 24 years of research and practice to Interstitial Lung Disease and a University Medical research center that is ranked #12 in the U.S. Time is of the essence for me, who are we kidding, it is a seriously fatal illness. There aren’t enough doctor’s in this field to even shop around for..

My e-mail was a brief summation of my 2-1/2 hour personalized consultation with Dr. Raghu and his team. I expect my treatment plan to be different from someone else, because of the stage I’m at, the age I’m at, (only 53), and the fact that I want the lung transplant if it’s an option for me. They are not going to put new lungs into a person still diseased with GERD; so if surgery is the only means to rid me of GERD and make me healthy enough for new lungs, then that’s what I will most likely choose. I need to be ready and as healthy as soon as possible for transplant. In light of the unpredictability of this disease taking a rapid decline and other factor’s involved in my disease process, Dr. Raghu’s aggressive (maybe radical) treatment makes sense for me and gives me the hope I was looking for.

C_53_IPF_5/09Washington-the- Evergreen- state

From: brucemoreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 20, 2009 11:13:12 AMSubject: Re: Consult at UWMC Seattle

There isn't a correct or incorrect. Just some things Dr. Raghu seesdifferently than what I've heard from other doctors at other Centers ofExcellence. I haven't heard anyone else make the same types ofstatements he has regarding GERD. Everyone else I've read just agrees90% of us have GERD, but don't establish cause and effect for the mostpart. I'd suggest googling. I have looked up many articles by Dr. Raghuand his GERD study.As to the PH procedure I picked info from I've also looked at otherdoctors treating PH. I would suspect Dr. Raghu would quickly acknowledgethat his procedure isn't being done as much as other things but thenwould give you the reasons he thinks its better and an improved way togo.As to his opinion on prednisone, it's actually from an old debate he hadwith another top IPF doctor. He said prednisone should always beprescribed. The other said only in

specific cases.The Actimmune and Pirfenidone involvement is available online as well.He's spoken often publicly about both. He has done so on behalf ofIntermune, the pharmaceutical.I'm sure in each case Dr. Raghu has sound logic and support for hisrecommendations. I've just followed here and elsewhere to understand thevarious views of him and others. Every doctor is different. Myrheumatologist would impose many things on me if I'd go along that Ijust don't want. Doesn't mean he's a bad doctor. But he'd do a kidneybiopsy. Nephrologist says no.There are also regional trends. For instance, Dr. Raghu and Dr. King ofUCSF do a lot of collaborating and share many views.Another example of local and regional preferences. Transtrachael is usedrather frequently by some doctors in some areas, but in my area quicklydismissed by the doctors, with a prejudice that makes no sense in myopinion.

Another I mentioned. I know several patients prescribed Enbrelby Dr. Lasky at Tulane. Generally it is for RA, not prescribed byPulmonologists and not approved for PF. But he's also very involved withthe clinical trials for Enbrel.phassociation. org on the two PH doctors at his location.> >> > I had my consultation at> > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC> yesterday. He> > spent a lot of time with me and is taking an aggressive approach. He> explained (like most of you already know) that the deadly progressionof> > IPF is a course that can’t be pre-determined:> > 1) It could continue a path

of slow> > growing or could be slow for a time and then take a rapid decline.> > 2) 20% of IPF patients respond to> > medications and his preferred treatment is a combination of> medications: Prednisone,> > Azathioprine, and Acetylcysteine. My pulmonary doctor started me> already on> > these medications; he said my Prednisone intake can be dropped from> 40mg to> > 20mg.> > 3) 5-10% of IPF patients have pulmonary> > hypertension or right-sided heart failure, which speeds the courseof> the> > disease.. To check for that the doctor> > has ordered an Echocardiography. If> > this turns up positive, surgery would be performed to implant a> ventricular> > assisted device cable to supply more blood to my heart. I guess> I’ll know more> > about this if I need it.>

> 4) The> > final treatment is the Lung Transplant; which I am agreeable to. He> said we> > will need to start preparing for this NOW and take a proactiveserious> approach> > to it. We have lots of work to do to> > make sure I am in very good health.> > Most of you know the> > serious danger of GERD (acid reflux). He said 90% of IPF patientswho> also have> > GERD, developed IPF as a result of food acid aspirations, (breathing> acid into> > the lungs). He is going to aggressively attack this disease. I was> diagnosed 8> > years ago for GERD and have been on daily medication (omeprazole) to> not much> > relief. He has ordered a test. It’s a 24-hour esophagealpH> test done on an> > outpatient basis. It will measure the pH or amount of acid thatflows> into

the> > esophagus from the stomach during a 24-hour period. The equipment> used in the esophageal pH test> > consists of a small probe that is inserted through your nostril and> positioned> > near the lower esophagus. The probe is plugged into a small unit (or> monitor)> > worn on your belt or over your shoulder. It will record the> occurrence of symptoms and the times when you eat and> > lie down. He said if I have certain> > amount of reflux during that 24-hour period the medicationI’ve> been taking> > isn’t working and I will need the surgery. The surgical> procedure is to remove> > a portion of the esophagus. I am agreeable to this.> > I did a 6-minute walk with> > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of> stairs and> > oxygen

saturation levels dropped to 80. Did 6-min walk with O2 and> oxy sats were up to 92. He ordered oxygen for exertion. He ordered> blood tests today (about 6 vials)> > to check for autoimmune diseases and whatever else.> > Dr. Raghu did not have my> > CT scans from Group Health to review and make his own diagnosis ofmy> stage of> > IPF. But his finding is Familial> > Idiopathic Pulmonary Fibrosis.. Familial because my brother died from> respiratory> > failure due to IPF; my mom was diagnosed with emphysema in 1982 and> put on> > oxygen and died that same year at age 56. Dr.. Raghu saidit’s a> good> > possibility it was IPF not emphysema.. My dad died of lung cancer at> age 76. IPF> > itself is not known to be genetic but the predisposition ofdeveloping> it is.> > He is very

concerned for my> > children; they are at serious risk of developing IPF. He would like> me and my children and sister to> > participate in a genetic research for Familial IPF at no cost to us.> The> > research specialist, , is in Texas, but the data and> blood samples will> > be collected here and sent to her.> > All-in-all I have confidence> > in Dr. Raghu and his team. He assured me his goal is to doeverything> he can to> > give me as normal a life as possible. I know it’s goingto be> an uphill battle,> > but I am going try my hardest to make this a pro-active climb, not> knowing> > what’s on the other side.> >> > C_53_IPF_ 5/09> > Washington-the- Evergreen- state>

>>

[Guest guest]

, I found it interesting what Dr. Raghu and the clinic did. Since that is the closest center of excellence to me that is where I will go if I can ever get to see a doctor to refer me. My local doctor said she was having the referral made up but I haven't heard from her. I had to go in and complain a few days ago because she wouldn't answer my calls. I'm glad you like Dr Raghu because right or wrong he is the one you have to go to without travelling a very long waysBeverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Consult at UWMC SeattleTo: Breathe-Support@ yahoogroups. comDate: Thursday, August 20, 2009, 8:28 PM

Bruce,

I wish this disease had clear-cut answers or that if majority rules at the center of excellence that must be right. But it's NOT. There aren't enough conclusive findings to pinpoint a “mainstream†or typical treatment plan for IPF or its underlying causes. I do agree with you that ALL doctors are opinions differ.. Every doctor is opinionated! They are required to make judgment calls based on their knowledge, expertise, and the severity of their patient's disease.

We are all at the mercy of doctors and research experts who specialize in lung disease/IPF. I believe most of us try to choose our doctor’s as carefully as we can based on their field of expertise in the area of our disease, as well as personal qualities. I’m willing to put my trust in someone who has devoted 24 years of research and practice to Interstitial Lung Disease and a University Medical research center that is ranked #12 in the U.S. Time is of the essence for me, who are we kidding, it is a seriously fatal illness. There aren’t enough doctor’s in this field to even shop around for..

My e-mail was a brief summation of my 2-1/2 hour personalized consultation with Dr. Raghu and his team. I expect my treatment plan to be different from someone else, because of the stage I’m at, the age I’m at, (only 53), and the fact that I want the lung transplant if it’s an option for me. They are not going to put new lungs into a person still diseased with GERD; so if surgery is the only means to rid me of GERD and make me healthy enough for new lungs, then that’s what I will most likely choose. I need to be ready and as healthy as soon as possible for transplant. In light of the unpredictability of this disease taking a rapid decline and other factor’s involved in my disease process, Dr. Raghu’s aggressive (maybe radical) treatment makes sense for me and gives me the hope I was looking for.

C_53_IPF_5/09Washington-the- Evergreen- state

From: brucemoreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 20, 2009 11:13:12 AMSubject: Re: Consult at UWMC Seattle

There isn't a correct or incorrect. Just some things Dr. Raghu seesdifferently than what I've heard from other doctors at other Centers ofExcellence. I haven't heard anyone else make the same types ofstatements he has regarding GERD. Everyone else I've read just agrees90% of us have GERD, but don't establish cause and effect for the mostpart. I'd suggest googling. I have looked up many articles by Dr. Raghuand his GERD study.As to the PH procedure I picked info from I've also looked at otherdoctors treating PH. I would suspect Dr. Raghu would quickly acknowledgethat his procedure isn't being done as much as other things but thenwould give you the reasons he thinks its better and an improved way togo.As to his opinion on prednisone, it's actually from an old debate he hadwith another top IPF doctor. He said prednisone should always beprescribed. The other said only in

specific cases.The Actimmune and Pirfenidone involvement is available online as well.He's spoken often publicly about both. He has done so on behalf ofIntermune, the pharmaceutical.I'm sure in each case Dr. Raghu has sound logic and support for hisrecommendations. I've just followed here and elsewhere to understand thevarious views of him and others. Every doctor is different. Myrheumatologist would impose many things on me if I'd go along that Ijust don't want. Doesn't mean he's a bad doctor. But he'd do a kidneybiopsy. Nephrologist says no.There are also regional trends. For instance, Dr. Raghu and Dr. King ofUCSF do a lot of collaborating and share many views.Another example of local and regional preferences. Transtrachael is usedrather frequently by some doctors in some areas, but in my area quicklydismissed by the doctors, with a prejudice that makes no sense in myopinion.

Another I mentioned. I know several patients prescribed Enbrelby Dr. Lasky at Tulane. Generally it is for RA, not prescribed byPulmonologists and not approved for PF. But he's also very involved withthe clinical trials for Enbrel.phassociation. org on the two PH doctors at his location.> >> > I had my consultation at> > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC> yesterday. He> > spent a lot of time with me and is taking an aggressive approach. He> explained (like most of you already know) that the deadly progressionof> > IPF is a course that can’t be pre-determined:> > 1) It could continue a path

of slow> > growing or could be slow for a time and then take a rapid decline.> > 2) 20% of IPF patients respond to> > medications and his preferred treatment is a combination of> medications: Prednisone,> > Azathioprine, and Acetylcysteine. My pulmonary doctor started me> already on> > these medications; he said my Prednisone intake can be dropped from> 40mg to> > 20mg.> > 3) 5-10% of IPF patients have pulmonary> > hypertension or right-sided heart failure, which speeds the courseof> the> > disease.. To check for that the doctor> > has ordered an Echocardiography. If> > this turns up positive, surgery would be performed to implant a> ventricular> > assisted device cable to supply more blood to my heart. I guess> I’ll know more> > about this if I need it.>

> 4) The> > final treatment is the Lung Transplant; which I am agreeable to. He> said we> > will need to start preparing for this NOW and take a proactiveserious> approach> > to it. We have lots of work to do to> > make sure I am in very good health.> > Most of you know the> > serious danger of GERD (acid reflux). He said 90% of IPF patientswho> also have> > GERD, developed IPF as a result of food acid aspirations, (breathing> acid into> > the lungs). He is going to aggressively attack this disease. I was> diagnosed 8> > years ago for GERD and have been on daily medication (omeprazole) to> not much> > relief. He has ordered a test. It’s a 24-hour esophagealpH> test done on an> > outpatient basis. It will measure the pH or amount of acid thatflows> into

the> > esophagus from the stomach during a 24-hour period. The equipment> used in the esophageal pH test> > consists of a small probe that is inserted through your nostril and> positioned> > near the lower esophagus. The probe is plugged into a small unit (or> monitor)> > worn on your belt or over your shoulder. It will record the> occurrence of symptoms and the times when you eat and> > lie down. He said if I have certain> > amount of reflux during that 24-hour period the medicationI’ve> been taking> > isn’t working and I will need the surgery. The surgical> procedure is to remove> > a portion of the esophagus. I am agreeable to this.> > I did a 6-minute walk with> > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of> stairs and> > oxygen

saturation levels dropped to 80. Did 6-min walk with O2 and> oxy sats were up to 92. He ordered oxygen for exertion. He ordered> blood tests today (about 6 vials)> > to check for autoimmune diseases and whatever else.> > Dr. Raghu did not have my> > CT scans from Group Health to review and make his own diagnosis ofmy> stage of> > IPF. But his finding is Familial> > Idiopathic Pulmonary Fibrosis.. Familial because my brother died from> respiratory> > failure due to IPF; my mom was diagnosed with emphysema in 1982 and> put on> > oxygen and died that same year at age 56. Dr.. Raghu saidit’s a> good> > possibility it was IPF not emphysema.. My dad died of lung cancer at> age 76. IPF> > itself is not known to be genetic but the predisposition ofdeveloping> it is.> > He is very

concerned for my> > children; they are at serious risk of developing IPF. He would like> me and my children and sister to> > participate in a genetic research for Familial IPF at no cost to us.> The> > research specialist, , is in Texas, but the data and> blood samples will> > be collected here and sent to her.> > All-in-all I have confidence> > in Dr. Raghu and his team. He assured me his goal is to doeverything> he can to> > give me as normal a life as possible. I know it’s goingto be> an uphill battle,> > but I am going try my hardest to make this a pro-active climb, not> knowing> > what’s on the other side.> >> > C_53_IPF_ 5/09> > Washington-the- Evergreen- state>

>>

[Guest guest]

Beverley,You can call the UWMC to see if they have received your referral. If not, it doesn't have to be submitted by the doc, the nurse can send your records over. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Saturday, August 22, 2009 10:04:30 AMSubject: Re: Consult at UWMC Seattle

, I found it interesting what Dr. Raghu and the clinic did. Since that is the closest center of excellence to me that is where I will go if I can ever get to see a doctor to refer me. My local doctor said she was having the referral made up but I haven't heard from her. I had to go in and complain a few days ago because she wouldn't answer my calls. I'm glad you like Dr Raghu because right or wrong he is the one you have to go to without travelling a very long waysBeverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Consult at UWMC SeattleTo: Breathe-Support@ yahoogroups. comDate: Thursday, August 20, 2009, 8:28 PM

Bruce,

I wish this disease had clear-cut answers or that if majority rules at the center of excellence that must be right. But it's NOT. There aren't enough conclusive findings to pinpoint a “mainstream†or typical treatment plan for IPF or its underlying causes. I do agree with you that ALL doctors are opinions differ.. Every doctor is opinionated! They are required to make judgment calls based on their knowledge, expertise, and the severity of their patient's disease.

We are all at the mercy of doctors and research experts who specialize in lung disease/IPF. I believe most of us try to choose our doctor’s as carefully as we can based on their field of expertise in the area of our disease, as well as personal qualities. I’m willing to put my trust in someone who has devoted 24 years of research and practice to Interstitial Lung Disease and a University Medical research center that is ranked #12 in the U..S. Time is of the essence for me, who are we kidding, it is a seriously fatal illness. There aren’t enough doctor’s in this field to even shop around for..

My e-mail was a brief summation of my 2-1/2 hour personalized consultation with Dr. Raghu and his team. I expect my treatment plan to be different from someone else, because of the stage I’m at, the age I’m at, (only 53), and the fact that I want the lung transplant if it’s an option for me. They are not going to put new lungs into a person still diseased with GERD; so if surgery is the only means to rid me of GERD and make me healthy enough for new lungs, then that’s what I will most likely choose. I need to be ready and as healthy as soon as possible for transplant. In light of the unpredictability of this disease taking a rapid decline and other factor’s involved in my disease process, Dr. Raghu’s aggressive (maybe radical) treatment makes sense for me and gives me the hope I was looking for.

C_53_IPF_5/09Washington-the- Evergreen- state

From: brucemoreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, August 20, 2009 11:13:12 AMSubject: Re: Consult at UWMC Seattle

There isn't a correct or incorrect. Just some things Dr. Raghu seesdifferently than what I've heard from other doctors at other Centers ofExcellence. I haven't heard anyone else make the same types ofstatements he has regarding GERD. Everyone else I've read just agrees90% of us have GERD, but don't establish cause and effect for the mostpart. I'd suggest googling.. I have looked up many articles by Dr. Raghuand his GERD study.As to the PH procedure I picked info from I've also looked at otherdoctors treating PH. I would suspect Dr. Raghu would quickly acknowledgethat his procedure isn't being done as much as other things but thenwould give you the reasons he thinks its better and an improved way togo.As to his opinion on prednisone, it's actually from an old debate he hadwith another top IPF doctor. He said prednisone should always beprescribed. The other said only in

specific cases.The Actimmune and Pirfenidone involvement is available online as well.He's spoken often publicly about both. He has done so on behalf ofIntermune, the pharmaceutical.I'm sure in each case Dr. Raghu has sound logic and support for hisrecommendations. I've just followed here and elsewhere to understand thevarious views of him and others. Every doctor is different. Myrheumatologist would impose many things on me if I'd go along that Ijust don't want. Doesn't mean he's a bad doctor. But he'd do a kidneybiopsy. Nephrologist says no.There are also regional trends. For instance, Dr. Raghu and Dr. King ofUCSF do a lot of collaborating and share many views.Another example of local and regional preferences. Transtrachael is usedrather frequently by some doctors in some areas, but in my area quicklydismissed by the doctors, with a prejudice that makes no sense in myopinion.

Another I mentioned. I know several patients prescribed Enbrelby Dr. Lasky at Tulane. Generally it is for RA, not prescribed byPulmonologists and not approved for PF. But he's also very involved withthe clinical trials for Enbrel.phassociation. org on the two PH doctors at his location.> >> > I had my consultation at> > UWMC with Dr. Ganesh Raghu, the Chief Lung Specialist at UWMC> yesterday. He> > spent a lot of time with me and is taking an aggressive approach. He> explained (like most of you already know) that the deadly progressionof> > IPF is a course that can’t be pre-determined:> > 1) It could continue a path

of slow> > growing or could be slow for a time and then take a rapid decline.> > 2) 20% of IPF patients respond to> > medications and his preferred treatment is a combination of> medications: Prednisone,> > Azathioprine, and Acetylcysteine. My pulmonary doctor started me> already on> > these medications; he said my Prednisone intake can be dropped from> 40mg to> > 20mg.> > 3) 5-10% of IPF patients have pulmonary> > hypertension or right-sided heart failure, which speeds the courseof> the> > disease.. To check for that the doctor> > has ordered an Echocardiography. If> > this turns up positive, surgery would be performed to implant a> ventricular> > assisted device cable to supply more blood to my heart. I guess> I’ll know more> > about this if I need it.>

> 4) The> > final treatment is the Lung Transplant; which I am agreeable to. He> said we> > will need to start preparing for this NOW and take a proactiveserious> approach> > to it. We have lots of work to do to> > make sure I am in very good health.> > Most of you know the> > serious danger of GERD (acid reflux). He said 90% of IPF patientswho> also have> > GERD, developed IPF as a result of food acid aspirations, (breathing> acid into> > the lungs). He is going to aggressively attack this disease. I was> diagnosed 8> > years ago for GERD and have been on daily medication (omeprazole) to> not much> > relief. He has ordered a test. It’s a 24-hour esophagealpH> test done on an> > outpatient basis. It will measure the pH or amount of acid thatflows> into

the> > esophagus from the stomach during a 24-hour period. The equipment> used in the esophageal pH test> > consists of a small probe that is inserted through your nostril and> positioned> > near the lower esophagus. The probe is plugged into a small unit (or> monitor)> > worn on your belt or over your shoulder. It will record the> occurrence of symptoms and the times when you eat and> > lie down. He said if I have certain> > amount of reflux during that 24-hour period the medicationI’ve> been taking> > isn’t working and I will need the surgery. The surgical> procedure is to remove> > a portion of the esophagus. I am agreeable to this.> > I did a 6-minute walk with> > Respiratory Therapist and O2 dropped to 84-86. Climbed 3 flights of> stairs and> > oxygen

saturation levels dropped to 80. Did 6-min walk with O2 and> oxy sats were up to 92. He ordered oxygen for exertion. He ordered> blood tests today (about 6 vials)> > to check for autoimmune diseases and whatever else.> > Dr. Raghu did not have my> > CT scans from Group Health to review and make his own diagnosis ofmy> stage of> > IPF. But his finding is Familial> > Idiopathic Pulmonary Fibrosis... Familial because my brother died from> respiratory> > failure due to IPF; my mom was diagnosed with emphysema in 1982 and> put on> > oxygen and died that same year at age 56. Dr.. Raghu saidit’s a> good> > possibility it was IPF not emphysema.. My dad died of lung cancer at> age 76. IPF> > itself is not known to be genetic but the predisposition ofdeveloping> it is.> > He is very

concerned for my> > children; they are at serious risk of developing IPF. He would like> me and my children and sister to> > participate in a genetic research for Familial IPF at no cost to us.> The> > research specialist, , is in Texas, but the data and> blood samples will> > be collected here and sent to her.> > All-in-all I have confidence> > in Dr. Raghu and his team. He assured me his goal is to doeverything> he can to> > give me as normal a life as possible. I know it’s goingto be> an uphill battle,> > but I am going try my hardest to make this a pro-active climb, not> knowing> > what’s on the other side.> >> > C_53_IPF_ 5/09> > Washington-the- Evergreen- state>

>>