Newly Diagnosed

January 5, 2005

The Doc I visited Monday was board-certified in internal medicine.

She came as a referral from a friend of a friend. When I got to her

office, I noticed that she was in a group of family practice

physicians. Their office was swamped because they had been closed

over the holiday weekend (one nurse said that they had seen 130

patients by 4:00pm). I think my doc was bouncing between me and

another patient on Monday.

I do have very good insurance; I don't need PCP referrals to see

specialists nor do I need to declare a PCP. I am going to continue to

see this PCP but keep talking to people so I can improve my situation.

I'll also keep reading about this disease so I can understand what is

being recommended and so I can intelligently speak to those

recommendations.

Many thanks,

Duluth, GA

>

> , did you go to a board-certified internal medicine doctor or a

> board-certified endocrinologist? Does your insurance allow you to do

> so? Diabetes is not an easy disease, and you do need an expert.

January 5, 2005

ERWachter@... wrote:

>

> In a message dated 1/4/2005 6:22:36 P.M. Eastern Standard Time,

> dustin1@... writes:

>

> Where are the good doctors and how do you find them?

>

Mine is about 50 miles from Fort Worth, Texas.

Amber

January 5, 2005

> I guess my question to the group is, how do you get the full attention

> of your medical provider when you're in their office?

Be informed and put your foot down when they start talking to you like

you're an illiterate idiot is my first bit of advice. My biggest problem

with doctors is that they tend to act like I'm some kind of slack-jawed

yokel just because I'm too poor to go anywhere but the county clinics. They

quickly find out I have quite a vocabulary of 5+ syllable words and I know

how to use them. *snicker*

I've bounced

> around alot because I always feel that I'm treated like livestock when

> I go to the doctor. My latest isn't much better, she was in and out

> three times while I was in her treatment room after I had waited one

> hour and twenty minutes to see her.

County clinics are like that where I am. One doc told me they slot them

exactly 15 minutes per patient. 0-0! And you wait 3-6 hours for that! She

usually gave more time as it was needed, but then she'd learned to listen to

her smart patients, give them what they needed and zip them through, only

spending more time with the clueless ones becasue they have no idea how

their own bodies work. :-p I loved that doc! She was great! Unfortunately

I'm in a totally different part of the county now and I'm stuck at a clinic

that doesn't run nearly as well.

> Where are the good doctors and how do you find them?

The best team of docs I ever had was a group in a Kelsey-Seybold clinic. I

had my GP AND my cardio specialist right there in the same offices! They

were top notch and I could go in as a WALK-IN and be done with lab work and

everything (so long as it was fairly standard tests) in 2-3 hours tops.

Regular appointments took maybe 45 mins to an hour. And they got stuff DONE

without railroading me around and giving me a lot of bull. But, without the

lovely insurance I had back then, I've got a snowball's chance of affording

to go back into their clinics. *sigh*

Aazari

The Art of Jolie E. Bonnette

http://www.aazari.com/

Art Protection League

http://www.artprotectionleague.org/

January 5, 2005

Graham wrote:

> Their office was swamped because they had been closed

> over the holiday weekend (one nurse said that they had seen 130

> patients by 4:00pm). I think my doc was bouncing between me and

> another patient on Monday.

Was this your very first visit there? Perhaps your experience was

unusual due to the holidays. Maybe the next time things will go better.

Amber

January 5, 2005

kittynicekitty wrote:

> Also you might want to try

> to get either the first appointment of the day or the first

> appointment after lunch. Also avoid Monday appointments if you can;

>

> Becky Carver

This is very true for us. Bob always asks for the first appointment

after their lunch period because our doctor visits his patients in the

hospital in the morning. Therefore, he never knows exactly what time he

will arrive at the office. Mondays are probably the worst day for an

appointment, followed maybe by Fridays.

Amber

May 29, 2008

Hello Everyone!

My name is Elissa (like no M). I have recenly been diagnosed

with PF. I guess I am still in the shock and comprehend stage. I am

41 years old with a 9 year old son. I have been reading through the

messages and gained strength from all of you. However, I must

confess that I still am mourning the life I thought I would have and

preparing for this new course. I guess that's the main reason I'm

here. To find out what that course is going to be and how to prepare

for it. Awhile after I found out I have this disease, a friend the

same age died unexpectedly. Today I went to her funeral and watched

her nine year old play with mine. It put things in perspective a

bit. I have to feel some appreciation that I get the time to prepare

my family for the inevitable. On the other hand nobody knows how

much time they have and there is no truer statement than to live

everyday as if it's your last. The funny thing is, I finally

realized that about 7 months ago and decided to change my life.

After years of trying to get ahead and building 2 businesses with my

husband, I decided it's time to enjoy my son and family. Almost

immediately I got sick and never recovered. I kept telling everyone,

this is the year I get my life back. I hope this doesn't ring too

much of negativity, but I just find it ironic. I do feel there will

be many positive things to come from this situation. My family and

friends have really shown their support and love. That is such an

amazing feeling. But I must admit handling people has been a

challenge for me. I am a realist and when people say, " Oh, you'll be

fine. " it is annoying to me. If anybody has any suggestions on how

to convey the situation it would be helpful. Oh, and I don't have

medical insurance. I've been paying cash to all these appointments,

x-rays, tests and the CT scan. Honestly, I still paid less than

many people pay in monthly insurance payments. My Doctor warned me

that is about to change and am scrambling to obtain insurance. I've

had Asthma since I was a child and numerous bouts with pneumonia and

bronchitis. I always joked with everyone that my lungs would kill

me. Well I hope my ramblings are not inappropriate and I do feel

better to get it off my chest. I was recently asked if I was angry

about the situation. Definately not. I believe the Lord has a plan

for me and I am scrambling to figure it out. I just want to get

through this with dignity and grace. Be a good example of a life

well lived. I know many of you are just that and I look forward to

getting to know you better. I have many questions, but another

time. Thanks for the space.

Elissa

Age 41, PF 5/08

May 29, 2008

Elissa, Welcome to our board. I talk like it is my board, but I feel like it is. You have come to the right place with all of your questions, tears, and fears. Everyone here is WONDERFUL! I'm so sorry for your diagnosis. My husband is the one with the disease, but he isn't on here. I'm here to learn what I can for him. My husband's name is Don and he is a realist too. I'm so sad that you are so young. I'm 60 and my husband is 67. I know what you say when you say that you are in shock and mourning your diagnosis. I think most of us are somewhere in that stage as well. Stick around and you will learn a lot. You didn't say where you live. There are people on this board from all over the world. You will get to know them soon. I think it is so cool we can talk to someone from Austrialia and India and even as close as

Canada. Glad to meet you and hug your little boy for me. I am a recently retired teacher. K Illinoiselissaghost wrote: Hello Everyone!My name is Elissa (like no M). I have recenly been diagnosed with PF. I guess I am still in the shock and comprehend stage. I am 41 years old with a 9 year old son. I have been reading through the messages and gained strength from all of you. However, I must confess that I still

am mourning the life I thought I would have and preparing for this new course. I guess that's the main reason I'm here. To find out what that course is going to be and how to prepare for it. Awhile after I found out I have this disease, a friend the same age died unexpectedly. Today I went to her funeral and watched her nine year old play with mine. It put things in perspective a bit. I have to feel some appreciation that I get the time to prepare my family for the inevitable. On the other hand nobody knows how much time they have and there is no truer statement than to live everyday as if it's your last. The funny thing is, I finally realized that about 7 months ago and decided to change my life. After years of trying to get ahead and building 2 businesses with my husband, I decided it's time to enjoy my son and family. Almost immediately I got sick and never recovered. I kept telling everyone, this is the year I get

my life back. I hope this doesn't ring too much of negativity, but I just find it ironic. I do feel there will be many positive things to come from this situation. My family and friends have really shown their support and love. That is such an amazing feeling. But I must admit handling people has been a challenge for me. I am a realist and when people say, "Oh, you'll be fine." it is annoying to me. If anybody has any suggestions on how to convey the situation it would be helpful. Oh, and I don't have medical insurance. I've been paying cash to all these appointments, x-rays, tests and the CT scan. Honestly, I still paid less than many people pay in monthly insurance payments. My Doctor warned me that is about to change and am scrambling to obtain insurance. I've had Asthma since I was a child and numerous bouts with pneumonia and bronchitis. I always joked with everyone that my lungs would kill me. Well I hope my

ramblings are not inappropriate and I do feel better to get it off my chest. I was recently asked if I was angry about the situation. Definately not. I believe the Lord has a plan for me and I am scrambling to figure it out. I just want to get through this with dignity and grace. Be a good example of a life well lived. I know many of you are just that and I look forward to getting to know you better. I have many questions, but another time. Thanks for the space.ElissaAge 41, PF 5/08 K Central Il Hubby ipf- 2006 As for me and my

house, we will serve the Lord 14

May 29, 2008

,

Thank you so much for your encouragement. I have read many of your

posts and plights with Don. I appreciate your sharing so I can relate

to my husbands side. I can only hope he will be the light to me that

you seem to be to Don. However, he is not taking this well and time

will only tell. I live in Southern California overlooking the Los

Angeles County Fair Grounds. I've no doubt I will learn alot and look

forward to any input. Thanks.

Elissa

Age 41, PF 5/08

> Hello Everyone!

>

> My name is Elissa (like no M). I have recenly been diagnosed

> with PF. I guess I am still in the shock and comprehend stage. I am

> 41 years old with a 9 year old son. I have been reading through the

> messages and gained strength from all of you. However, I must

> confess that I still am mourning the life I thought I would have and

> preparing for this new course. I guess that's the main reason I'm

> here. To find out what that course is going to be and how to prepare

> for it. Awhile after I found out I have this disease, a friend the

> same age died unexpectedly. Today I went to her funeral and watched

> her nine year old play with mine. It put things in perspective a

> bit. I have to feel some appreciation that I get the time to prepare

> my family for the inevitable. On the other hand nobody knows how

> much time they have and there is no truer statement than to live

> everyday as if it's your last. The funny thing is, I finally

> realized that about 7 months ago and decided to change my life.

> After years of trying to get ahead and building 2 businesses with my

> husband, I decided it's time to enjoy my son and family. Almost

> immediately I got sick and never recovered. I kept telling everyone,

> this is the year I get my life back. I hope this doesn't ring too

> much of negativity, but I just find it ironic. I do feel there will

> be many positive things to come from this situation. My family and

> friends have really shown their support and love. That is such an

> amazing feeling. But I must admit handling people has been a

> challenge for me. I am a realist and when people say, " Oh, you'll be

> fine. " it is annoying to me. If anybody has any suggestions on how

> to convey the situation it would be helpful. Oh, and I don't have

> medical insurance. I've been paying cash to all these appointments,

> x-rays, tests and the CT scan. Honestly, I still paid less than

> many people pay in monthly insurance payments. My Doctor warned me

> that is about to change and am scrambling to obtain insurance. I've

> had Asthma since I was a child and numerous bouts with pneumonia and

> bronchitis. I always joked with everyone that my lungs would kill

> me. Well I hope my ramblings are not inappropriate and I do feel

> better to get it off my chest. I was recently asked if I was angry

> about the situation. Definately not. I believe the Lord has a plan

> for me and I am scrambling to figure it out. I just want to get

> through this with dignity and grace. Be a good example of a life

> well lived. I know many of you are just that and I look forward to

> getting to know you better. I have many questions, but another

> time. Thanks for the space.

>

> Elissa

> Age 41, PF 5/08

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

,

Thank you so much for your encouragement. I have read many of your

posts and plights with Don. I appreciate your sharing so I can relate

to my husbands side. I can only hope he will be the light to me that

you seem to be to Don. However, he is not taking this well and time

will only tell. I live in Southern California overlooking the Los

Angeles County Fair Grounds.

May 30, 2008

I've not taken it well either. Have him go to the care-givers board. I'm telling you there is a lot of WONDERFUL ( I use that a lot don't I?) information that he really needs to handle this. They so appreciate a male perspective on this topic as well. There is a guy from Rockford that posts and we get to see how he is dealing. Ah, S California. How lucky you are to be in the moderate weather. It is raining today and warm so Don is finding it easier to breathe. K Illinoiselissaghost wrote: ,Thank you so much for your encouragement. I have read many of yourposts and plights with Don. I appreciate your sharing so I can relateto my husbands side. I can only hope he will be the light to me thatyou seem to be to Don. However, he is not taking this well and timewill only tell. I live in Southern California overlooking the LosAngeles County Fair Grounds. I've no doubt I will learn alot and lookforward to any input. Thanks.ElissaAge 41, PF 5/08> Hello

Everyone!>> My name is Elissa (like no M). I have recenly been diagnosed> with PF. I guess I am still in the shock and comprehend stage. I am> 41 years old with a 9 year old son. I have been reading through the> messages and gained strength from all of you. However, I must> confess that I still am mourning the life I thought I would have and> preparing for this new course. I guess that's the main reason I'm> here. To find out what that course is going to be and how to prepare> for it. Awhile after I found out I have this disease, a friend the> same age died unexpectedly. Today I went to her funeral and watched> her nine year old play with mine. It put things in perspective a> bit. I have to feel some appreciation that I get the time to prepare> my family for the inevitable. On the other hand nobody knows how> much time they have and there is no truer statement than to

live> everyday as if it's your last. The funny thing is, I finally> realized that about 7 months ago and decided to change my life.> After years of trying to get ahead and building 2 businesses with my> husband, I decided it's time to enjoy my son and family. Almost> immediately I got sick and never recovered. I kept telling everyone,> this is the year I get my life back. I hope this doesn't ring too> much of negativity, but I just find it ironic. I do feel there will> be many positive things to come from this situation. My family and> friends have really shown their support and love. That is such an> amazing feeling. But I must admit handling people has been a> challenge for me. I am a realist and when people say, "Oh, you'll be> fine." it is annoying to me. If anybody has any suggestions on how> to convey the situation it would be helpful. Oh, and I don't have> medical

insurance. I've been paying cash to all these appointments,> x-rays, tests and the CT scan. Honestly, I still paid less than> many people pay in monthly insurance payments. My Doctor warned me> that is about to change and am scrambling to obtain insurance. I've> had Asthma since I was a child and numerous bouts with pneumonia and> bronchitis. I always joked with everyone that my lungs would kill> me. Well I hope my ramblings are not inappropriate and I do feel> better to get it off my chest. I was recently asked if I was angry> about the situation. Definately not. I believe the Lord has a plan> for me and I am scrambling to figure it out. I just want to get> through this with dignity and grace. Be a good example of a life> well lived. I know many of you are just that and I look forward to> getting to know you better. I have many questions, but another> time. Thanks for the

space.>> Elissa> Age 41, PF 5/08>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>,Thank you so much for your encouragement. I have read many of yourposts and plights with Don. I appreciate your sharing so I can relateto my husbands side. I can only hope he will be the light to me thatyou seem to be to Don. However, he is not taking this well and timewill only tell. I live in Southern California overlooking the LosAngeles County Fair Grounds. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

May 30, 2008

Brett... I was thinking about you just yesterday. How are your brothers doing? Do they know what's going on yet?

How are you feeling? When you post you don't say much about you.

Give that sweet baby an extra hug.

MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there!

Re: Newly Diagnosed

Welcome Elissa ,

my name is brett and if you have been reading posts for a while you should

know that I don't post as often as most here but I still read most of the post's

you and I are about the same age, Im 40, tell me more about your condition

are you on any treatment?

are you on O2 ?

how were you diagnosed ?

don't worry to much about your husband he will be strong for you when this all sinks in

it takes a while . People react differently to news like this

I myself have been faced with this disease for about ten years or so

I watched my mother suffer so very long before she passed from IPF

and my grandmother died from it when she was only in her 40's

so I guess I wasn't really shocked when I was diagnosed last year

I have been researching this disease from the time my mother became sick

and that is how I cope... I have tried to educate myself as much as possible

and the single most important thing I can pass along to you is , DON'T BELIEVE EVERYTHING YOU READ

a lot of the information you will find is really really outdated

well anyway Im always here if you need to talk . welcome again

BRETT BOWSER FAMILIAL UIP/IPF 40 MI.

Hello Everyone!My name is Elissa (like no M). I have recenly been diagnosed with PF. I guess I am still in the shock and comprehend stage. I am 41 years old with a 9 year old son. I have been reading through the messages and gained strength from all of you. However, I must confess that I still am mourning the life I thought I would have and preparing for this new course. I guess that's the main reason I'm here. To find out what that course is going to be and how to prepare for it. Awhile after I found out I have this disease, a friend the same age died unexpectedly. Today I went to her funeral and watched her nine year old play with mine. It put things in perspective a bit. I have to feel some appreciation that I get the time to prepare my family for the inevitable. On the other hand nobody knows how much time they have and there is no truer statement than to live everyday as if it's your last. The funny thing is, I finally realized that about 7 months ago and decided to change my life. After years of trying to get ahead and building 2 businesses with my husband, I decided it's time to enjoy my son and family. Almost immediately I got sick and never recovered. I kept telling everyone, this is the year I get my life back. I hope this doesn't ring too much of negativity, but I just find it ironic. I do feel there will be many positive things to come from this situation. My family and friends have really shown their support and love. That is such an amazing feeling. But I must admit handling people has been a challenge for me. I am a realist and when people say, "Oh, you'll be fine." it is annoying to me. If anybody has any suggestions on how to convey the situation it would be helpful. Oh, and I don't have medical insurance. I've been paying cash to all these appointments, x-rays, tests and the CT scan. Honestly, I still paid less than many people pay in monthly insurance payments. My Doctor warned me that is about to change and am scrambling to obtain insurance. I've had Asthma since I was a child and numerous bouts with pneumonia and bronchitis. I always joked with everyone that my lungs would kill me. Well I hope my ramblings are not inappropriate and I do feel better to get it off my chest. I was recently asked if I was angry about the situation. Definately not. I believe the Lord has a plan for me and I am scrambling to figure it out. I just want to get through this with dignity and grace. Be a good example of a life well lived. I know many of you are just that and I look forward to getting to know you better. I have many questions, but another time. Thanks for the space.ElissaAge 41, PF 5/08

brett bowser

brettvectordist

May 30, 2008

Hi mama,it's so nice to know someone is thinking about you thank you so muchIm doing ok my little one keeps me busy when I get home from work she's at that age where she doesn't want anyone to hold her she just wants to get into everything and explore her surroundings as far as my brother's,, yes everyone in my family knows, all though it is seldom talked about... that's ok with me I would prefer not to be looked at differentlywhat's your secret project all about?take care of yourself and I'll have some fresh pic's of elizabeth coming real soonshe is growing so fastBrett UIP/IPF 11/07 40 Mi. Brett... I was thinking about you just yesterday. How are your brothers doing? Do they know what's going on yet?How are you feeling? When you post you don't say much about you.Give that sweet baby an extra hug.MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there! Re: Newly DiagnosedWelcome Elissa ,my name is brett and if you have been reading posts for a while you shouldknow that I don't post as often as most here but I still read most of the post'syou and I are about the same age, Im 40, tell me more about your conditionare you on any treatment? are you on O2 ?how were you diagnosed ?don't worry to much about your husband he will be strong for you when this all sinks in it takes a while . People react differently to news like thisI myself have been faced with this disease for about ten years or so I watched my mother suffer so very long before she passed from IPFand my grandmother died from it when she was only in her 40'sso I guess I wasn't really shocked when I was diagnosed last yearI have been researching this disease from the time my mother became sickand that is how I cope... I have tried to educate myself as much as possible and the single most important thing I can pass along to you is , DON'T BELIEVE EVERYTHING YOU READa lot of the information you will find is really really outdatedwell anyway Im always here if you need to talk . welcome againBRETT BOWSER FAMILIAL UIP/IPF 40 MI.Hello Everyone!My name is Elissa (like no M). I have recenly been diagnosed with PF. I guess I am still in the shock and comprehend stage. I am 41 years old with a 9 year old son. I have been reading through the messages and gained strength from all of you. However, I must confess that I still am mourning the life I thought I would have and preparing for this new course. I guess that's the main reason I'm here. To find out what that course is going to be and how to prepare for it. Awhile after I found out I have this disease, a friend the same age died unexpectedly. Today I went to her funeral and watched her nine year old play with mine. It put things in perspective a bit. I have to feel some appreciation that I get the time to prepare my family for the inevitable. On the other hand nobody knows how much time they have and there is no truer statement than to live everyday as if it's your last. The funny thing is, I finally realized that about 7 months ago and decided to change my life. After years of trying to get ahead and building 2 businesses with my husband, I decided it's time to enjoy my son and family. Almost immediately I got sick and never recovered. I kept telling everyone, this is the year I get my life back. I hope this doesn't ring too much of negativity, but I just find it ironic. I do feel there will be many positive things to come from this situation. My family and friends have really shown their support and love. That is such an amazing feeling. But I must admit handling people has been a challenge for me. I am a realist and when people say, "Oh, you'll be fine." it is annoying to me. If anybody has any suggestions on how to convey the situation it would be helpful. Oh, and I don't have medical insurance. I've been paying cash to all these appointments, x-rays, tests and the CT scan. Honestly, I still paid less than many people pay in monthly insurance payments. My Doctor warned me that is about to change and am scrambling to obtain insurance. I've had Asthma since I was a child and numerous bouts with pneumonia and bronchitis. I always joked with everyone that my lungs would kill me. Well I hope my ramblings are not inappropriate and I do feel better to get it off my chest. I was recently asked if I was angry about the situation. Definately not. I believe the Lord has a plan for me and I am scrambling to figure it out. I just want to get through this with dignity and grace. Be a good example of a life well lived. I know many of you are just that and I look forward to getting to know you better. I have many questions, but another time. Thanks for the space.ElissaAge 41, PF 5/08brett bowserbrettvectordist brett bowserbrett@...

May 30, 2008

Elissa,

So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift.

There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago.

No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener.

Again, welcome.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost > immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08>

May 30, 2008

Joyce,

Thanks so much for your insight. I feel really positive today. Just got back from the Pulmonologist and he says they seem to have caught it early. I got bronchitis and pneumonia repeatedly over seven months and could not get better. After they exhausted every antibiotic, steroid and Asthma treatment, I was sent for a CT scan. Meanwhile, I had been seeing an Asthma specialist thinking that was causing the shortness of breath. They ruled out everything else before concluding it was PF. He has not indicated another immune disorder, but I do need more testing. He is not recommending a biopsy until I get stronger. Several weeks ago he put me on Prednisone and Azathioprine and they seem to have helped. I have been on Prednisone on and off for months due to pneumonia etc. Many years of experience on this particular drug and I always gain weight despite the fact that I don't eat.

However, I feel better than I have in months. I will need O2 for exertion (most everything is an effort) but I am still awaiting insurance. I miss being more active and playing with my son, so I'm sure that will help.

We have been planning some construction for some time and I'm wondering if anyone had any experience with the effects of dust etc. or any environmental issues that seem to worsen the condition. The Doctor encouraged me to carry on as normal with some precautions, but I don't want to worsen things unknowingly. I notice chemicals, smells, and that type of thing do bother me. I appreciate the input.

I din't mean to give the impression I was counting my days. I just need to prepare in order to cope. Infomation and planning help me to feel in control. I'm sure I have lots of years for that, but again no one knows. If anything, I feel this diagnosis gives me more opportunity to enjoy life and loved ones. It puts things in perspective and I probably needed that more than most. Again I really appreciate you sharing with me. I am off to get my son and watch my little left handed fast ball thrower wow em on the baseball field. There's nothing that makes me happier. The weather is beautiful and all is good in the world!!!

Subject: Re: Newly DiagnosedTo: Breathe-Support Date: Friday, May 30, 2008, 6:35 PM

Elissa,

So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift.

There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago.

No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener.

Again, welcome.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still

am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost >

immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain

insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08>

May 30, 2008

Elissa,

I'm glad you go to see the pulmonologist today and that things seem relatively stable for now. I know how overwhelming this all is. I was a little older than you when I was diagnosed (I was 46) and my son was pretty much grown at 20 but it still jerks a knot in your tail to consider your mortality up close and personal in your 40's.

I would offer a little caution on the construction in your house. AVOID DUST!! Try to seal off a couple of rooms to serve as "clean areas" while your remodeling is being done. Buy some paper masks and use them when you have to venture outside the clean areas of your home.

Most of us are hypersensitive to chemical smells, the odors associated with cleaning products, even soaps, perfumes, laundry detergents etc. You might want to start switching over to unscented products and less caustic cleaning products to protect your lungs.

One other thing I would offer is you might want to consider purchasing an oximeter. It will allow you to monitor your oxygen saturations under different conditions so that you will have a better idea how much oxygen you need for different types of activity. You can purchase one for as little as $65 and it's an investment in protecting yourself from oxygen levels that are too low.

Remember we're all in this together and we'll get through it together!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Newly DiagnosedTo: Breathe-Support@ yahoogroups. comDate: Friday, May 30, 2008, 6:35 PM

Elissa,

So glad you decided to land here. We welcome you. I am so sorry that at 41 you find yourself with such a diagnosis. Have you had consults, evaluations, biopsy, etc. to confirm the diagnosis? Have you been diagnosed with PF secondary to an autoimmune disorder or IPF. Either way, I always say a duck is a duck. But, you can't number your days nor ask God to do so for you. Each day is a gift.

There is nothing cuter in this world than a 9 year old boy. Until I had grandsons, I didn't know that. So enjoy him, use up every day! Your friend's death is so tragic. When I was in the hospital recovering from my biopsy, my husband's coworker's wife died. I had known she was sick, but we weren't friends, so I didn't know of what. She died of Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the same diagnosis. Had not even heard the name of it before. But, it scared me to death. I came home from the hospital to wait to die. I was 52. A couple of different friends came to yell at me and get me moving again. That was 11 years ago.

No need to try and guestimate or wait. Just live, trust God, love that boy. Other things will work themselves out. If it is an option for you, go to rehab. A real eye opener.

Again, welcome.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Hello Everyone!> > My name is Elissa (like no M). I have recenly been diagnosed > with PF. I guess I am still in the shock and comprehend stage. I am > 41 years old with a 9 year old son. I have been reading through the > messages and gained strength from all of you. However, I must > confess that I still

am mourning the life I thought I would have and > preparing for this new course. I guess that's the main reason I'm > here. To find out what that course is going to be and how to prepare > for it. Awhile after I found out I have this disease, a friend the > same age died unexpectedly. Today I went to her funeral and watched > her nine year old play with mine. It put things in perspective a > bit. I have to feel some appreciation that I get the time to prepare > my family for the inevitable. On the other hand nobody knows how > much time they have and there is no truer statement than to live > everyday as if it's your last. The funny thing is, I finally > realized that about 7 months ago and decided to change my life. > After years of trying to get ahead and building 2 businesses with my > husband, I decided it's time to enjoy my son and family. Almost >

immediately I got sick and never recovered. I kept telling everyone, > this is the year I get my life back. I hope this doesn't ring too > much of negativity, but I just find it ironic. I do feel there will > be many positive things to come from this situation. My family and > friends have really shown their support and love. That is such an > amazing feeling. But I must admit handling people has been a > challenge for me. I am a realist and when people say, "Oh, you'll be > fine." it is annoying to me. If anybody has any suggestions on how > to convey the situation it would be helpful. Oh, and I don't have > medical insurance. I've been paying cash to all these appointments, > x-rays, tests and the CT scan. Honestly, I still paid less than > many people pay in monthly insurance payments. My Doctor warned me > that is about to change and am scrambling to obtain

insurance. I've > had Asthma since I was a child and numerous bouts with pneumonia and > bronchitis. I always joked with everyone that my lungs would kill > me. Well I hope my ramblings are not inappropriate and I do feel > better to get it off my chest. I was recently asked if I was angry > about the situation. Definately not. I believe the Lord has a plan > for me and I am scrambling to figure it out. I just want to get > through this with dignity and grace. Be a good example of a life > well lived. I know many of you are just that and I look forward to > getting to know you better. I have many questions, but another > time. Thanks for the space.> > Elissa> Age 41, PF 5/08>

May 30, 2008

Hi Elissa....I read your post as a newbie and want to welcome you too. This is a great place to be but there is sadness when another newbie joins us.

I can't add much to what others have said to you. Stay close to the board and ask your questions. There is always someone with an answer.

Right after dx (diagnosis) is such a hard time...a million questions, fear, denial, how to tell family, on and on. Then tests and more breathing tests.

Hang on. We're here for you.

MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there!

Newly Diagnosed

Hello Everyone!My name is Elissa (like no M). I have recenly been diagnosed with PF. I guess I am still in the shock and comprehend stage. I am 41 years old with a 9 year old son. I have been reading through the messages and gained strength from all of you. However, I must confess that I still am mourning the life I thought I would have and preparing for this new course. I guess that's the main reason I'm here. To find out what that course is going to be and how to prepare for it. Awhile after I found out I have this disease, a friend the same age died unexpectedly. Today I went to her funeral and watched her nine year old play with mine. It put things in perspective a bit. I have to feel some appreciation that I get the time to prepare my family for the inevitable. On the other hand nobody knows how much time they have and there is no truer statement than to live everyday as if it's your last. The funny thing is, I finally realized that about 7 months ago and decided to change my life. After years of trying to get ahead and building 2 businesses with my husband, I decided it's time to enjoy my son and family. Almost immediately I got sick and never recovered. I kept telling everyone, this is the year I get my life back. I hope this doesn't ring too much of negativity, but I just find it ironic. I do feel there will be many positive things to come from this situation. My family and friends have really shown their support and love. That is such an amazing feeling. But I must admit handling people has been a challenge for me. I am a realist and when people say, "Oh, you'll be fine." it is annoying to me. If anybody has any suggestions on how to convey the situation it would be helpful. Oh, and I don't have medical insurance. I've been paying cash to all these appointments, x-rays, tests and the CT scan. Honestly, I still paid less than many people pay in monthly insurance payments. My Doctor warned me that is about to change and am scrambling to obtain insurance. I've had Asthma since I was a child and numerous bouts with pneumonia and bronchitis. I always joked with everyone that my lungs would kill me. Well I hope my ramblings are not inappropriate and I do feel better to get it off my chest. I was recently asked if I was angry about the situation. Definately not. I believe the Lord has a plan for me and I am scrambling to figure it out. I just want to get through this with dignity and grace. Be a good example of a life well lived. I know many of you are just that and I look forward to getting to know you better. I have many questions, but another time. Thanks for the space.ElissaAge 41, PF 5/08

May 30, 2008

Elissa, I can give you some information

about ways to protect yourself from the dust, etc.

I am a potter and have not stopped messiing with the clay because of my

diagnosis. I just use

very protect gear.

One website ...www.ICanBreathe.com...has

many different types of good

protective masks. I use the ones with the removable activated carbon

filters.

They filter out the dust and the smells too.

I don't think I officially welcomed you to the "air family".

So...WELCOME!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna be

iron like a lion in Zion” Bob Marley

Elissa Casper wrote:

Joyce,

Thanks so much for your insight. I feel really positive

today. Just got back from the Pulmonologist and he says they seem to

have caught it early. I got bronchitis and pneumonia repeatedly

over seven months and could not get better. After they exhausted every

antibiotic, steroid and Asthma treatment, I was sent for a CT scan.

Meanwhile, I had been seeing an Asthma specialist thinking that was

causing the shortness of breath. They ruled out everything else before

concluding it was PF. He has not indicated another immune disorder,

but I do need more testing. He is not recommending a biopsy until I get

stronger. Several weeks ago he put me on Prednisone and Azathioprine

and they seem to have helped. I have been on Prednisone on and off for

months due to pneumonia etc. Many years of experience on this

particular drug and I always gain weight despite the fact that I don't

eat. However, I feel better than I have in months. I will need O2 for

exertion (most everything is an effort) but I am still awaiting

insurance. I miss being more active and playing with my son, so I'm

sure that will help.

We have been planning some construction for some time and

I'm wondering if anyone had any experience with the effects of dust

etc. or any environmental issues that seem to worsen the condition.

The Doctor encouraged me to carry on as normal with some precautions,

but I don't want to worsen things unknowingly. I notice chemicals,

smells, and that type of thing do bother me. I appreciate the input.

I din't mean to give the impression I was counting my days.

I just need to prepare in order to cope. Infomation and planning help

me to feel in control. I'm sure I have lots of years for that, but

again no one knows. If anything, I feel this diagnosis gives me more

opportunity to enjoy life and loved ones. It puts things in

perspective and I probably needed that more than most. Again I really

appreciate you sharing with me. I am off to get my son and watch my

little left handed fast ball thrower wow em on the baseball field.

There's nothing that makes me happier. The weather is beautiful and

all is good in the world!!!

From:

Joyce <janne5303>

Subject: Re: Newly Diagnosed

To: Breathe-Support

Date: Friday, May 30, 2008, 6:35 PM

Elissa,

So glad you

decided to land here. We welcome you. I am so sorry that at 41 you

find yourself with such a diagnosis. Have you had consults,

evaluations, biopsy, etc. to confirm the diagnosis? Have you been

diagnosed with PF secondary to an autoimmune disorder or IPF. Either

way, I always say a duck is a duck. But, you can't number your days

nor ask God to do so for you. Each day is a gift.

There is

nothing cuter in this world than a 9 year old boy. Until I had

grandsons, I didn't know that. So enjoy him, use up every day! Your

friend's death is so tragic. When I was in the hospital recovering

from my biopsy, my husband's coworker's wife died. I had known she was

sick, but we weren't friends, so I didn't know of what. She died of

Pulmonary Fibrosis. She was 50 with a new grandchild. Then I got the

same diagnosis. Had not even heard the name of it before. But, it

scared me to death. I came home from the hospital to wait to die. I

was 52. A couple of different friends came to yell at me and get me

moving again. That was 11 years ago.

No need to

try and guestimate or wait. Just live, trust God, love that boy.

Other things will work themselves out. If it is an option for you, go

to rehab. A real eye opener.

Again,

welcome.

Hugs,

Joyce D.

Pulmonary

Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008

Mixed

Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for

Transplant 2006

......I will not forget you. Behold, I have engraved you on the palm of

my hands. Isaiah 49: 15-16

>

> Hello Everyone!

>

> My name is Elissa (like no M). I have recenly been

diagnosed

> with PF. I guess I am still in the shock and comprehend stage. I

am

> 41 years old with a 9 year old son. I have been reading through

the

> messages and gained strength from all of you. However, I must

> confess that I still am mourning the life I thought I would have

and

> preparing for this new course. I guess that's the main reason I'm

> here. To find out what that course is going to be and how to

prepare

> for it. Awhile after I found out I have this disease, a friend the

> same age died unexpectedly. Today I went to her funeral and

watched

> her nine year old play with mine. It put things in perspective a

> bit. I have to feel some appreciation that I get the time to

prepare

> my family for the inevitable. On the other hand nobody knows how

> much time they have and there is no truer statement than to live

> everyday as if it's your last. The funny thing is, I finally

> realized that about 7 months ago and decided to change my life.

> After years of trying to get ahead and building 2 businesses with

my

> husband, I decided it's time to enjoy my son and family. Almost

> immediately I got sick and never recovered. I kept telling

everyone,

> this is the year I get my life back. I hope this doesn't ring too

> much of negativity, but I just find it ironic. I do feel there

will

> be many positive things to come from this situation. My family and

> friends have really shown their support and love. That is such an

> amazing feeling. But I must admit handling people has been a

> challenge for me. I am a realist and when people say, "Oh, you'll

be

> fine." it is annoying to me. If anybody has any suggestions on how

> to convey the situation it would be helpful. Oh, and I don't have

> medical insurance. I've been paying cash to all these

appointments,

> x-rays, tests and the CT scan. Honestly, I still paid less than

> many people pay in monthly insurance payments. My Doctor warned me

> that is about to change and am scrambling to obtain insurance.

I've

> had Asthma since I was a child and numerous bouts with pneumonia