Re: Need help preparing questions for an IPF expert.

[Guest guest]

,

What have you been told about your disease thus far? Have they given it a specific name? What type of fibrosis is it?

Get yourself a notebook and start making a list of questions as they occur to you. Gather your medical records to bring to your appointment, biopsy report, CT scans, pft results, lab work results. Try to either get all this to the specialist ahead of time so he/she can go over it in advance of your visit or at the very least have it with you when you go to the appointment. It's much easier to get answers when the doctor has your information in front of him/her.

Unfortunately for many of us there are not alot of clear answers. In fact there are more questions than answers. I'm sure more folks will pop in with suggestions for you too!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 6, 2009 11:24:05 AMSubject: Need help preparing questions for an IPF expert.

Hi,After getting so many conflicting responses in regard to this disease I have made an appointment to see a specialist after I leave the rehab center. I have soooo many questions... ..Is my type of the disease hereditary?. ...what can I expect as it progresses?. ...etc... ..etc. I would really appreciate it if I could get some input from the group so that I can make the most of my visit to the doctor. Thanks....Sandy

[Guest guest]

,

What have you been told about your disease thus far? Have they given it a specific name? What type of fibrosis is it?

Get yourself a notebook and start making a list of questions as they occur to you. Gather your medical records to bring to your appointment, biopsy report, CT scans, pft results, lab work results. Try to either get all this to the specialist ahead of time so he/she can go over it in advance of your visit or at the very least have it with you when you go to the appointment. It's much easier to get answers when the doctor has your information in front of him/her.

Unfortunately for many of us there are not alot of clear answers. In fact there are more questions than answers. I'm sure more folks will pop in with suggestions for you too!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 6, 2009 11:24:05 AMSubject: Need help preparing questions for an IPF expert.

Hi,After getting so many conflicting responses in regard to this disease I have made an appointment to see a specialist after I leave the rehab center. I have soooo many questions... ..Is my type of the disease hereditary?. ...what can I expect as it progresses?. ...etc... ..etc. I would really appreciate it if I could get some input from the group so that I can make the most of my visit to the doctor. Thanks....Sandy

[Guest guest]

, I am just a newbie but the best advice that I have ever received about my medical care I received on this site. IT IS YOUR MEDICAL CARE! Be very proactive and don't let the doctor's intimidate you. You have a right to know everything. Sometimes, at least in my case, they treated me like a mushroom (dark place). Hope you get the answers you need. Prayers are winging their way to heaven for you.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: Beth

Sent: Saturday, June 06, 2009 9:33 AM

To: Breathe-Support

Subject: Re: Need help preparing questions for an IPF expert.

,

What have you been told about your disease thus far? Have they given it a specific name? What type of fibrosis is it?

Get yourself a notebook and start making a list of questions as they occur to you. Gather your medical records to bring to your appointment, biopsy report, CT scans, pft results, lab work results. Try to either get all this to the specialist ahead of time so he/she can go over it in advance of your visit or at the very least have it with you when you go to the appointment. It's much easier to get answers when the doctor has your information in front of him/her.

Unfortunately for many of us there are not alot of clear answers. In fact there are more questions than answers. I'm sure more folks will pop in with suggestions for you too!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: sandra_mash <SMash37 (AT) aol (DOT) com>To: Breathe-Support Sent: Saturday, June 6, 2009 11:24:05 AMSubject: Need help preparing questions for an IPF expert.

Hi,After getting so many conflicting responses in regard to this disease I have made an appointment to see a specialist after I leave the rehab center. I have soooo many questions... ..Is my type of the disease hereditary?. ...what can I expect as it progresses?. ...etc... ..etc. I would really appreciate it if I could get some input from the group so that I can make the most of my visit to the doctor. Thanks....Sandy

[Guest guest]

Thanks, Beth. So far I've just been told that the biopsy showed IPF as

well as some form of pneumonia. My primary doctor has told me that she has not

as yet received the biopsy report. I'll start up on requesting reports after the

weekend. Thanks again. Sandy

>

> ,

> What have you been told about your disease thus far? Have they given it a

specific name? What type of fibrosis is it?

> Get yourself a notebook and start making a list of questions as they occur to

you. Gather your medical records to bring to your appointment, biopsy report,

CT scans, pft results, lab work results. Try to either get all this to the

specialist ahead of time so he/she can go over it in advance of your visit or at

the very least have it with you when you go to the appointment. It's much easier

to get answers when the doctor has your information in front of him/her.

> Unfortunately for many of us there are not alot of clear answers. In fact

there are more questions than answers. I'm sure more folks will pop in with

suggestions for you too!

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: sandra_mash

> To: Breathe-Support

> Sent: Saturday, June 6, 2009 11:24:05 AM

> Subject: Need help preparing questions for an IPF expert.

>

>

>

>

>

> Hi,

>

> After getting so many conflicting responses in regard to this disease I have

made an appointment to see a specialist after I leave the rehab center. I have

soooo many questions... ..Is my type of the disease hereditary?. ...what can I

expect as it progresses?. ...etc... ..etc. I would really appreciate it if I

could get some input from the group so that I can make the most of my visit to

the doctor.

>

> Thanks....Sandy

>

[Guest guest]

Thanks so much for your thoughts and prayers, Sunny. Yes, I know the importance

of support groups. My husband died last year. One of the causes was

Amyloidosis...a rare disease. When I needed help....they are the folks I

depended on.

My prayers are with you as well......Sandy

>

> , I am just a newbie but the best advice that I have ever received about

my medical care I received on this site. IT IS YOUR MEDICAL CARE! Be very

proactive and don't let the doctor's intimidate you. You have a right to know

everything. Sometimes, at least in my case, they treated me like a mushroom

(dark place). Hope you get the answers you need. Prayers are winging their way

to heaven for you.

>

> Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's

Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

>

>

> From: Beth

> Sent: Saturday, June 06, 2009 9:33 AM

> To: Breathe-Support

> Subject: Re: Need help preparing questions for an IPF

expert.

>

>

>

>

>

>

> ,

> What have you been told about your disease thus far? Have they given it a

specific name? What type of fibrosis is it?

> Get yourself a notebook and start making a list of questions as they occur to

you. Gather your medical records to bring to your appointment, biopsy report, CT

scans, pft results, lab work results. Try to either get all this to the

specialist ahead of time so he/she can go over it in advance of your visit or at

the very least have it with you when you go to the appointment. It's much easier

to get answers when the doctor has your information in front of him/her.

> Unfortunately for many of us there are not alot of clear answers. In fact

there are more questions than answers. I'm sure more folks will pop in with

suggestions for you too!

>

> Beth

>

> Moderator

>

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

>

>

>

--------------------------------------------------------------------------------

> From: sandra_mash

> To: Breathe-Support

> Sent: Saturday, June 6, 2009 11:24:05 AM

> Subject: Need help preparing questions for an IPF expert.

>

>

> Hi,

>

> After getting so many conflicting responses in regard to this disease I have

made an appointment to see a specialist after I leave the rehab center. I have

soooo many questions... ..Is my type of the disease hereditary?. ...what can I

expect as it progresses?. ...etc... ..etc. I would really appreciate it if I

could get some input from the group so that I can make the most of my visit to

the doctor.

>

> Thanks....Sandy

>