Re: Convenient doctors

[Guest guest]

Beverley,If you get an appointment at UWMC, call me and I'll go with you! C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Monday, August 3, 2009 5:52:46 PMSubject: Re: Convenient doctors

Thank you Bruce,Today i tried to call for an appointment to the UWMC. I couldn't get through. I'll try again tomorrow. I did join the Neptune Society and I got my urn and a book to fill out with information my children will need or want to have. Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia IdahoFrom: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo:

Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,

depending on where you live, thats just not possible. Joyce Rudy

couldn't find one in her area of Arizona and in fact was being done much

harm by her pulmonologist' s ignorance. Going to National Jewish was of

great trouble and expense but she'd tell you today its value. Many of

these means of finding expert pulmonologists will not give those expert

in Pulmonary Fibrosis. However, a good compromise might be finding one

of those for routine help while going to a major ILD center for

diagnosis and treatment. Ideally then they would coordinate with the

local doctor.

I don't have or know of any lists of doctors with PF expertise. I would

ask any doctor how many PF patients does he currently treat and where

did he gather his knowledge of the disease. Those are very fair

questions. The Pulmonary Hypertension Association actually does have a

list of those expert in PH and since they often work closely with PF

doctors, one might look there and ask them for a cohort. I live in the

Dallas area and there are only two doctors here who make their list.

None of them are in the city I live in, Plano.

I use PH as an example because its the information readily available and

a disease many of us may face. Here is their find a doctor tool:

http://www.phassociation.org/Find_A_Doctor/

Unfortunately, there is not an expert PH doctor in West Virginia or

South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many

other states only have one. Regular Cardiologists are not qualified for

PH. Regular Pulmonologists aren't.

The same situation exists with PF. I'm not pointing this out to be an

alarmist, but there are areas of the country you can't find the

expertise you need. If you live in Mississippi, you may have to drive to

Alabama or Louisiana. I drove 900 miles initially for a thorough second

opinion and work up because although there were those with experience in

Texas, they weren't yet a Center of Excellence. I suspect those same

states i listed above that don't have PH doctors may not have

pulmonologists I would trust to diagnose or recommend treatment plans on

PF. Which brings one to a personal decision of choosing a good doctor

not properly trained in PF or traveling. Traveling adds time and

certainly expense. I'd recommend the compromise of local maintenance

under remote expert supervision, but each must make their own choices.

We have a member who lives in GA but chose Duke because at the time

Emory wasn't at current levels. Jack Marshall is in Maine and travels to

Duke. We have those from Mississippi going to Alabama and Joyce Rudy

went from remote Arizona to Denver. MangoMan who keeps us entertained

would love to return to Mexico, but we've lost a member who made a trip

back to Mexico and he recognizes the facts of medical exposure and risks

enough to realize its not the best place to live with PF.

Mostly, we don't choose where we live based on medical needs but other

factors led to it long ago. However, two years ago I was contemplating

where to live and my medical needs were an overriding part of that

decision and that was before the PF diagnosis. I feel for those who

can't move and can't get what they need locally. However, I don't want

us to overlook the fact that some locations just don't have doctors

expert in PF. As important as research may be and as national attention

may be, one thing that is sorely lacking is training within the

Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers

aren't as we wish when some look for medical expertise in their area. I

would personally do anything I could to get to the best I could find,

but that may not be possible for some nor the choice others feel is

right for them. I do suggest one thing though to those saying they can't

travel the distance. Reread Joyce Rudy's story. She sacrificed the birds

she loved, made the trips by herself at great expense, and had to beg

friends to take care of her dogs. She went against the recommendation of

her local pulmonologist and made the trip. I remember her lost and

frustrated. Now I see her upbeat and off to her exercise program. Likely

her life has been lengthened. No doubt the quality improved and not just

from a physical standpoint. Even more from a comfort and control

standpoint.

[Guest guest]

, Thank you. I have some who is taking me and we will probably have to get a hotel room. He won't go into the appointment with me though. Maybe we can figure out something. I would love to meet you. I haven't called for the appointment yet. I called the number that Sher gave me and I couldn't get through. I have been so busy the last few days. Yesterday I bought a cremation plan and today I changed my will. I really need to see my personal care physician. I will call her tomorrow. I can't go tomorrow because I have someone coming to help with my housework. After I see her I will know more what to tell the UWMC when I call for my appointment. I'm going to take the list of doctors that Jerry looked up for me and see if she can recommend one of them. Today my breathing was bad and I know that I need to see someone.Beverley Joy,71, UIP,NSIP

1-09,Diabetes,Sjogren's,Fibromyalgia IdahoFrom: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo:

Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,

depending on where you live, thats just not possible. Joyce Rudy

couldn't find one in her area of Arizona and in fact was being done much

harm by her pulmonologist' s ignorance. Going to National Jewish was of

great trouble and expense but she'd tell you today its value. Many of

these means of finding expert pulmonologists will not give those expert

in Pulmonary Fibrosis. However, a good compromise might be finding one

of those for routine help while going to a major ILD center for

diagnosis and treatment. Ideally then they would coordinate with the

local doctor.

I don't have or know of any lists of doctors with PF expertise. I would

ask any doctor how many PF patients does he currently treat and where

did he gather his knowledge of the disease. Those are very fair

questions. The Pulmonary Hypertension Association actually does have a

list of those expert in PH and since they often work closely with PF

doctors, one might look there and ask them for a cohort. I live in the

Dallas area and there are only two doctors here who make their list.

None of them are in the city I live in, Plano.

I use PH as an example because its the information readily available and

a disease many of us may face. Here is their find a doctor tool:

http://www.phassoci ation.org/ Find_A_Doctor/

Unfortunately, there is not an expert PH doctor in West Virginia or

South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many

other states only have one. Regular Cardiologists are not qualified for

PH. Regular Pulmonologists aren't.

The same situation exists with PF. I'm not pointing this out to be an

alarmist, but there are areas of the country you can't find the

expertise you need. If you live in Mississippi, you may have to drive to

Alabama or Louisiana. I drove 900 miles initially for a thorough second

opinion and work up because although there were those with experience in

Texas, they weren't yet a Center of Excellence. I suspect those same

states i listed above that don't have PH doctors may not have

pulmonologists I would trust to diagnose or recommend treatment plans on

PF. Which brings one to a personal decision of choosing a good doctor

not properly trained in PF or traveling. Traveling adds time and

certainly expense. I'd recommend the compromise of local maintenance

under remote expert supervision, but each must make their own choices.

We have a member who lives in GA but chose Duke because at the time

Emory wasn't at current levels. Jack Marshall is in Maine and travels to

Duke. We have those from Mississippi going to Alabama and Joyce Rudy

went from remote Arizona to Denver. MangoMan who keeps us entertained

would love to return to Mexico, but we've lost a member who made a trip

back to Mexico and he recognizes the facts of medical exposure and risks

enough to realize its not the best place to live with PF.

Mostly, we don't choose where we live based on medical needs but other

factors led to it long ago. However, two years ago I was contemplating

where to live and my medical needs were an overriding part of that

decision and that was before the PF diagnosis. I feel for those who

can't move and can't get what they need locally. However, I don't want

us to overlook the fact that some locations just don't have doctors

expert in PF. As important as research may be and as national attention

may be, one thing that is sorely lacking is training within the

Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers

aren't as we wish when some look for medical expertise in their area. I

would personally do anything I could to get to the best I could find,

but that may not be possible for some nor the choice others feel is

right for them. I do suggest one thing though to those saying they can't

travel the distance. Reread Joyce Rudy's story. She sacrificed the birds

she loved, made the trips by herself at great expense, and had to beg

friends to take care of her dogs. She went against the recommendation of

her local pulmonologist and made the trip. I remember her lost and

frustrated. Now I see her upbeat and off to her exercise program. Likely

her life has been lengthened. No doubt the quality improved and not just

from a physical standpoint. Even more from a comfort and control

standpoint.

[Guest guest]

Beverley,

If that breathing gets hard, rest as much as you need to. It is so easy (and I still do it) to get in a frantic mode when things need doing. Hope you won't have to wait long on a UWMC appointment. I do believe that everyone but us lives on a day-to-day basis, while we live one breath at a time. When you get all your busy work done and appointments made, we'll catch up on Facebook. reminds me that we are a lot more than just pen pals on this board. Take good care.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.

[Guest guest]

Beverley, I can feel the urgency in your e-mails. So, I just want you to know that I care very much about you and am praying that you will get an appointment with someone very soon and get the care you need. It makes us feel helpless and alone when we can't get our needs met. Keep hope alive and know that you are loved.I didn't know you had someone to go with you to UWMC, so I'm glad you do. But, I was serious about going with you, if you want someone to go in with you to talk to the doctor. I can take the Ferry from Bremerton and meet you there.Here is some more contact information for UWMC.

University of Washington Medical Center Chest Clinic

Location: Medical Specialties Clinic, 3rd Floor, UW Medical Center

Clinic Chief: Ganesh Raghu, MD, FCCP, FACP

Clinic Nurse: Kathleen Kiner and Sheryl

Days/Hours: Tues 8:00-12:30, Wed 8:00-5:00, Fridays 8:00-4:00

Appointment Contact:

Interstitial Lung Disease, Sarcoidosis,

Pulmonary Fibrosis Clinic

Location: Medical Specialties Clinic, 3rd Floor, UW Medical Center

Clinic Director: Ganesh Raghu, MD, FCCP, FACP

Nurse Coordinators: Carolyn Spada, &

, RNS

Research Coordinator: Snydsman, RN, BSN,

MN

Days/Hours: Wednesdays 8:00-5:00, Fridays 8:00-3:00

Appointment Contact:

You'll be in my thoughts and prayers today. C_53_IPF_5/09Washington-the-Evergreen-stateTo:

Breathe-Support Sent: Tuesday, August 4, 2009 10:10:52 PMSubject: Re: Convenient doctors

, Thank you. I have some who is taking me and we will probably have to get a hotel room. He won't go into the appointment with me though. Maybe we can figure out something. I would love to meet you. I haven't called for the appointment yet. I called the number that Sher gave me and I couldn't get through. I have been so busy the last few days. Yesterday I bought a cremation plan and today I changed my will. I really need to see my personal care physician. I will call her tomorrow. I can't go tomorrow because I have someone coming to help with my housework. After I see her I will know more what to tell the UWMC when I call for my appointment. I'm

going to take the list of doctors that Jerry looked up for me and see if she can recommend one of them. Today my breathing was bad and I know that I need to see someone.Beverley Joy,71, UIP,NSIP

1-09,Diabetes, Sjogren's, Fibromyalgia IdahoFrom: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo:

Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,

depending on where you live, thats just not possible. Joyce Rudy

couldn't find one in her area of Arizona and in fact was being done much

harm by her pulmonologist' s ignorance. Going to National Jewish was of

great trouble and expense but she'd tell you today its value. Many of

these means of finding expert pulmonologists will not give those expert

in Pulmonary Fibrosis. However, a good compromise might be finding one

of those for routine help while going to a major ILD center for

diagnosis and treatment. Ideally then they would coordinate with the

local doctor.

I don't have or know of any lists of doctors with PF expertise. I would

ask any doctor how many PF patients does he currently treat and where

did he gather his knowledge of the disease. Those are very fair

questions. The Pulmonary Hypertension Association actually does have a

list of those expert in PH and since they often work closely with PF

doctors, one might look there and ask them for a cohort. I live in the

Dallas area and there are only two doctors here who make their list.

None of them are in the city I live in, Plano.

I use PH as an example because its the information readily available and

a disease many of us may face. Here is their find a doctor tool:

http://www.phassoci ation.org/ Find_A_Doctor/

Unfortunately, there is not an expert PH doctor in West Virginia or

South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many

other states only have one. Regular Cardiologists are not qualified for

PH. Regular Pulmonologists aren't.

The same situation exists with PF. I'm not pointing this out to be an

alarmist, but there are areas of the country you can't find the

expertise you need. If you live in Mississippi, you may have to drive to

Alabama or Louisiana. I drove 900 miles initially for a thorough second

opinion and work up because although there were those with experience in

Texas, they weren't yet a Center of Excellence. I suspect those same

states i listed above that don't have PH doctors may not have

pulmonologists I would trust to diagnose or recommend treatment plans on

PF. Which brings one to a personal decision of choosing a good doctor

not properly trained in PF or traveling. Traveling adds time and

certainly expense. I'd recommend the compromise of local maintenance

under remote expert supervision, but each must make their own choices.

We have a member who lives in GA but chose Duke because at the time

Emory wasn't at current levels. Jack Marshall is in Maine and travels to

Duke. We have those from Mississippi going to Alabama and Joyce Rudy

went from remote Arizona to Denver. MangoMan who keeps us entertained

would love to return to Mexico, but we've lost a member who made a trip

back to Mexico and he recognizes the facts of medical exposure and risks

enough to realize its not the best place to live with PF.

Mostly, we don't choose where we live based on medical needs but other

factors led to it long ago. However, two years ago I was contemplating

where to live and my medical needs were an overriding part of that

decision and that was before the PF diagnosis. I feel for those who

can't move and can't get what they need locally. However, I don't want

us to overlook the fact that some locations just don't have doctors

expert in PF. As important as research may be and as national attention

may be, one thing that is sorely lacking is training within the

Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers

aren't as we wish when some look for medical expertise in their area. I

would personally do anything I could to get to the best I could find,

but that may not be possible for some nor the choice others feel is

right for them. I do suggest one thing though to those saying they can't

travel the distance. Reread Joyce Rudy's story. She sacrificed the birds

she loved, made the trips by herself at great expense, and had to beg

friends to take care of her dogs. She went against the recommendation of

her local pulmonologist and made the trip. I remember her lost and

frustrated. Now I see her upbeat and off to her exercise program. Likely

her life has been lengthened. No doubt the quality improved and not just

from a physical standpoint. Even more from a comfort and control

standpoint.

[Guest guest]

Jerry, Today I am resting. I agree with you about other people living day to day and they don't understand us at all. I will have to try to take some time in the evening to catch up a little on Facebook. I don't mind tying up my phone so much then. But my evening is your night. We are three hours different. is a person that I must meet. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.

[Guest guest]

, You are too new to the board to know about Bob. We have been dating for almost 5 years. We each have our own homes and we don't live together but he does spend a lot of time here. We each have our own lives. It's not like a real couple should be. He isn't much support. He drives me where I need to go in the winter and anyplace that is very far away anytime. I miss my husband. We were a real couple for most of our 45 years. I despise Robb Harper. (the cult leader) He destroyed a lot of marriages and a lot of little girls lives. Except for this group I feel very much alone dealing with this disease. Bob has a boat at Oak Harbor. I either go on the boat with him or he takes me to my daughters house. He will take me over there for an appointment but he hates hospitals and he won't go in with me. He has had a wife and a girlfriend die and he told me he

wanted to run when he found out I had PF. He said he won't run but knowing he would like to doesn't make me feel good. I felt the same way when I found out that he has emphysema but I didn't tell him about it. My father and sister died of emphysema.Thank you for the information. If it is at all possible I would like you to go with me to see the doctors at the UWMC. Thank you for caring and thank you for the information. I have an appointment to see my doctor tomorrow. Then maybe I can get things straightened out so I can get an appointment over there.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoFrom: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo:

Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,

depending on where you live, thats just not possible. Joyce Rudy

couldn't find one in her area of Arizona and in fact was being done much

harm by her pulmonologist' s ignorance. Going to National Jewish was of

great trouble and expense but she'd tell you today its value. Many of

these means of finding expert pulmonologists will not give those expert

in Pulmonary Fibrosis. However, a good compromise might be finding one

of those for routine help while going to a major ILD center for

diagnosis and treatment. Ideally then they would coordinate with the

local doctor.

I don't have or know of any lists of doctors with PF expertise. I would

ask any doctor how many PF patients does he currently treat and where

did he gather his knowledge of the disease. Those are very fair

questions. The Pulmonary Hypertension Association actually does have a

list of those expert in PH and since they often work closely with PF

doctors, one might look there and ask them for a cohort. I live in the

Dallas area and there are only two doctors here who make their list.

None of them are in the city I live in, Plano.

I use PH as an example because its the information readily available and

a disease many of us may face. Here is their find a doctor tool:

http://www.phassoci ation.org/ Find_A_Doctor/

Unfortunately, there is not an expert PH doctor in West Virginia or

South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many

other states only have one. Regular Cardiologists are not qualified for

PH. Regular Pulmonologists aren't.

The same situation exists with PF. I'm not pointing this out to be an

alarmist, but there are areas of the country you can't find the

expertise you need. If you live in Mississippi, you may have to drive to

Alabama or Louisiana. I drove 900 miles initially for a thorough second

opinion and work up because although there were those with experience in

Texas, they weren't yet a Center of Excellence. I suspect those same

states i listed above that don't have PH doctors may not have

pulmonologists I would trust to diagnose or recommend treatment plans on

PF. Which brings one to a personal decision of choosing a good doctor

not properly trained in PF or traveling. Traveling adds time and

certainly expense. I'd recommend the compromise of local maintenance

under remote expert supervision, but each must make their own choices.

We have a member who lives in GA but chose Duke because at the time

Emory wasn't at current levels. Jack Marshall is in Maine and travels to

Duke. We have those from Mississippi going to Alabama and Joyce Rudy

went from remote Arizona to Denver. MangoMan who keeps us entertained

would love to return to Mexico, but we've lost a member who made a trip

back to Mexico and he recognizes the facts of medical exposure and risks

enough to realize its not the best place to live with PF.

Mostly, we don't choose where we live based on medical needs but other

factors led to it long ago. However, two years ago I was contemplating

where to live and my medical needs were an overriding part of that

decision and that was before the PF diagnosis. I feel for those who

can't move and can't get what they need locally. However, I don't want

us to overlook the fact that some locations just don't have doctors

expert in PF. As important as research may be and as national attention

may be, one thing that is sorely lacking is training within the

Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers

aren't as we wish when some look for medical expertise in their area. I

would personally do anything I could to get to the best I could find,

but that may not be possible for some nor the choice others feel is

right for them. I do suggest one thing though to those saying they can't

travel the distance. Reread Joyce Rudy's story. She sacrificed the birds

she loved, made the trips by herself at great expense, and had to beg

friends to take care of her dogs. She went against the recommendation of

her local pulmonologist and made the trip. I remember her lost and

frustrated. Now I see her upbeat and off to her exercise program. Likely

her life has been lengthened. No doubt the quality improved and not just

from a physical standpoint. Even more from a comfort and control

standpoint.

[Guest guest]

Beverly Joy,My heart goes out to you, wish I could drive you.  Know you are not alone, ever!Dyane, Phoenix, IPF 02

 

, You are too new to the board to know about Bob. We have been dating for almost 5 years. We each have our own homes and we don't live together but he does spend a lot of time here. We each have our own lives. It's not like a real couple should be. He isn't much support. He drives me where I need to go in the winter and anyplace that is very far away anytime. I miss my husband. We were a real couple for most of our 45 years. I despise Robb Harper. (the cult leader) He destroyed a lot of marriages and a lot of little girls lives.

Except for this group I feel very much alone dealing with this disease. Bob has a boat at Oak Harbor. I either go on the boat with him or he takes me to my daughters house. He will take me over there for an appointment but he hates hospitals and he won't go in with me. He has had a wife and a girlfriend die and he told me he

wanted to run when he found out I had PF. He said he won't run but knowing he would like to doesn't make me feel good. I felt the same way when I found out that he has emphysema but I didn't tell him about it. My father and sister died of emphysema.

Thank you for the information. If it is at all possible I would like you to go with me to see the doctors at the UWMC. Thank you for caring and thank you for the information. I have an appointment to see my doctor tomorrow. Then maybe I can get things straightened out so I can get an appointment over there.

Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo:

Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

 

Sometimes when you're seeking a convenient doctor with expertise,

depending on where you live, thats just not possible. Joyce Rudy

couldn't find one in her area of Arizona and in fact was being done much

harm by her pulmonologist' s ignorance. Going to National Jewish was of

great trouble and expense but she'd tell you today its value. Many of

these means of finding expert pulmonologists will not give those expert

in Pulmonary Fibrosis. However, a good compromise might be finding one

of those for routine help while going to a major ILD center for

diagnosis and treatment. Ideally then they would coordinate with the

local doctor.

I don't have or know of any lists of doctors with PF expertise. I would

ask any doctor how many PF patients does he currently treat and where

did he gather his knowledge of the disease. Those are very fair

questions. The Pulmonary Hypertension Association actually does have a

list of those expert in PH and since they often work closely with PF

doctors, one might look there and ask them for a cohort. I live in the

Dallas area and there are only two doctors here who make their list.

None of them are in the city I live in, Plano.

I use PH as an example because its the information readily available and

a disease many of us may face. Here is their find a doctor tool:

http://www.phassoci ation.org/ Find_A_Doctor/

Unfortunately, there is not an expert PH doctor in West Virginia or

South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many

other states only have one. Regular Cardiologists are not qualified for

PH. Regular Pulmonologists aren't.

The same situation exists with PF. I'm not pointing this out to be an

alarmist, but there are areas of the country you can't find the

expertise you need. If you live in Mississippi, you may have to drive to

Alabama or Louisiana. I drove 900 miles initially for a thorough second

opinion and work up because although there were those with experience in

Texas, they weren't yet a Center of Excellence. I suspect those same

states i listed above that don't have PH doctors may not have

pulmonologists I would trust to diagnose or recommend treatment plans on

PF. Which brings one to a personal decision of choosing a good doctor

not properly trained in PF or traveling. Traveling adds time and

certainly expense. I'd recommend the compromise of local maintenance

under remote expert supervision, but each must make their own choices.

We have a member who lives in GA but chose Duke because at the time

Emory wasn't at current levels. Jack Marshall is in Maine and travels to

Duke. We have those from Mississippi going to Alabama and Joyce Rudy

went from remote Arizona to Denver. MangoMan who keeps us entertained

would love to return to Mexico, but we've lost a member who made a trip

back to Mexico and he recognizes the facts of medical exposure and risks

enough to realize its not the best place to live with PF.

Mostly, we don't choose where we live based on medical needs but other

factors led to it long ago. However, two years ago I was contemplating

where to live and my medical needs were an overriding part of that

decision and that was before the PF diagnosis. I feel for those who

can't move and can't get what they need locally. However, I don't want

us to overlook the fact that some locations just don't have doctors

expert in PF. As important as research may be and as national attention

may be, one thing that is sorely lacking is training within the

Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers

aren't as we wish when some look for medical expertise in their area. I

would personally do anything I could to get to the best I could find,

but that may not be possible for some nor the choice others feel is

right for them. I do suggest one thing though to those saying they can't

travel the distance. Reread Joyce Rudy's story. She sacrificed the birds

she loved, made the trips by herself at great expense, and had to beg

friends to take care of her dogs. She went against the recommendation of

her local pulmonologist and made the trip. I remember her lost and

frustrated. Now I see her upbeat and off to her exercise program. Likely

her life has been lengthened. No doubt the quality improved and not just

from a physical standpoint. Even more from a comfort and control

standpoint.

[Guest guest]

Beverley,

When you talk with your personal care physician, aske her if she will contact UWMC for an appointment for you, as well as with her recommendation for a nearby pulmonologist. She may be able to expediate matters in a way we patients aren't always able to achieve. Gopod luck and I'll get back to my afterrnoon treading and milling.

Jerry/Mississippi/54/IPF/dx April 05

Who believes that hard times help us appreciate the good times even more.

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.

[Guest guest]

Hi Beverley!How are you feeling today? Did you get to see your primary care doctor? I think about you often. Please let me know how today went.Consider yourself hugged C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Wednesday, August 5, 2009 10:31:17 PMSubject: Re: Convenient doctors

Jerry, I hadn't thought about that. Thank you. She is the one who got me my conserver.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.

[Guest guest]

Beverly Joy,That was my problem, I never stay up til 2, but whatever is going on in me the last 5 days has me wired and stupid.....Here it is again 10:30 should be falling over and aside from being really really brain dead, I'm wide awake.Dyane PHoenix IPF 02> > > > > > From: Bruce Moreland <brucemoreland@ gmail.com>> > Subject: Convenient doctors> > To:> > Breathe-Support@ yahoogroups. com> > Date: Monday, August 3, 2009, 10:57 AM> > > > > > > > > > > > > > > > > > > > Sometimes when you're seeking a convenient doctor with expertise,> > > > depending on where you live, thats just not possible. Joyce Rudy> > > > couldn't find one in her area of Arizona and in fact was being done much> > > > harm by her pulmonologist' s ignorance. Going to National Jewish was of> > > > great trouble and expense but she'd tell you today its value. Many of> > > > these means of finding expert pulmonologists will not give those expert> > > > in Pulmonary Fibrosis. However, a good compromise might be finding one> > > > of those for routine help while going to a major ILD center for> > > > diagnosis and treatment. Ideally then they would coordinate with the> > > > local doctor.> > > > > > > > I don't have or know of any lists of doctors with PF expertise. I would> > > > ask any doctor how many PF patients does he currently treat and where> > > > did he gather his knowledge of the disease. Those are very fair> > > > questions. The Pulmonary Hypertension Association actually does have a> > > > list of those expert in PH and since they often work closely with PF> > > > doctors, one might look there and ask them for a cohort. I live in the> > > > Dallas area and there are only two doctors here who make their list.> > > > None of them are in the city I live in, Plano.> > > > > > > > I use PH as an example because its the information readily available and> > > > a disease many of us may face. Here is their find a doctor tool:> > > > > > > > http://www.phassoci ation.org/ Find_A_Doctor/> > > > > > > > Unfortunately, there is not an expert PH doctor in West Virginia or> > > > South Dakota or North Dakota or Wyoming or New Mexico or Idaho and many> > > > other states only have one. Regular Cardiologists are not qualified for> > > > PH. Regular Pulmonologists aren't.> > > > > > > > The same situation exists with PF. I'm not pointing this out to be an> > > > alarmist, but there are areas of the country you can't find the> > > > expertise you need. If you live in Mississippi, you may have to drive to> > > > Alabama or Louisiana. I drove 900 miles initially for a thorough second> > > > opinion and work up because although there were those with experience in> > > > Texas, they weren't yet a Center of Excellence. I suspect those same> > > > states i listed above that don't have PH doctors may not have> > > > pulmonologists I would trust to diagnose or recommend treatment plans on> > > > PF. Which brings one to a personal decision of choosing a good doctor> > > > not properly trained in PF or traveling. Traveling adds time and> > > > certainly expense. I'd recommend the compromise of local maintenance> > > > under remote expert supervision, but each must make their own choices.> > > > We have a member who lives in GA but chose Duke because at the time> > > > Emory wasn't at current levels. Jack Marshall is in Maine and travels to> > > > Duke. We have those from Mississippi going to Alabama and Joyce Rudy> > > > went from remote Arizona to Denver. MangoMan who keeps us entertained> > > > would love to return to Mexico, but we've lost a member who made a trip> > > > back to Mexico and he recognizes the facts of medical exposure and risks> > > > enough to realize its not the best place to live with PF.> > > > > > > > Mostly, we don't choose where we live based on medical needs but other> > > > factors led to it long ago. However, two years ago I was contemplating> > > > where to live and my medical needs were an overriding part of that> > > > decision and that was before the PF diagnosis. I feel for those who> > > > can't move and can't get what they need locally. However, I don't want> > > > us to overlook the fact that some locations just don't have doctors> > > > expert in PF. As important as research may be and as national attention> > > > may be, one thing that is sorely lacking is training within the> > > > Pulmonology profession in Pulmonary Fibrosis. I'm sorry the answers> > > > aren't as we wish when some look for medical expertise in their area. I> > > > would personally do anything I could to get to the best I could find,> > > > but that may not be possible for some nor the choice others feel is> > > > right for them. I do suggest one thing though to those saying they can't> > > > travel the distance. Reread Joyce Rudy's story. She sacrificed the birds> > > > she loved, made the trips by herself at great expense, and had to beg> > > > friends to take care of her dogs. She went against the recommendation of> > > > her local pulmonologist and made the trip. I remember her lost and> > > > frustrated. Now I see her upbeat and off to her exercise program. Likely> > > > her life has been lengthened. No doubt the quality improved and not just> > > > from a physical standpoint. Even more from a comfort and control> > > > standpoint.> >>

[Guest guest]

Beverley Joy,

Good to hear from you, even if the circumstances aren't what we'd like. I got up thinking you might have written, and I was glad I did. I am hopeful that the pulmonologist you will have will be a good PF doctor. So many of the ones I found on the internet seemed to be oriented towards apnea and asthma. Sometimes those will overlap with PF. Rest well and thanks for getting on and getting us up to date at the end of a tiring day. Take good care and rest well tonight.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.

[Guest guest]

Hello Olga, I would like to know more about you. Are you Married? Do you have children? How old are you?Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF.. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis.. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip.. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.

[Guest guest]

Jerry, I don't think I answered this. I talked to Dr. P's PA. He told me he would talk to Dr. Gathaiga Friday. I am hoping to hear from him Monday. I want to get a referal to UWMC. My personal care doctor is working on it but she said that it would be better if the pulmonary doctor did it and told them that I am progreesing. She thought that I would get in quicker that way. If I don't hear from anyone Monday I will call them again Tuesday. I think I will look up Dr.Gathaiga and see what it says about him.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassoci ation.org/ Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.