new to the group

December 1, 2009

Hello everyone.....I just found this group today and I couldn't be happier to

find all of you! My name is Patti.....I am 59 yrs old and was told three years

ago that I had pulmonary fibrosis in my lung bases. I went through the entire

ordeal of test after test and was told it was so mild that they thought it may

have been there for years. I continued to do all the follow up tests each year

and until now it had remained unchanged. This past month the tests showed it has

now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two

years. I still feel just fine but the doctor says it is time for Prednisone. I

have an appt in Chicago this month with a new doctor. I have read volumes of

information on the internet and most of the info I read just scares me. They

make it sound like a death sentence. Again I am so happy to find this group!!

December 1, 2009

Welcome Patti,As we all say, Glad you found us, Sorry you need us. Sounds like you are doing well all things considered. Don't let the whole 2-5 years freak you out. I'm going on my 8th year come January and even though I need 8lpm of o2 on exertion, I still work 40 hrs a week. Again welcome. Let us know where you are from. The midwest I assume since you are going to Chicago. I am from Wisconsin originally, near Milwaukee. Everyone here has their own stories, but we all "get it" and you will find love, acceptance, and wonderful friends here.Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!".">> Hello everyone.....I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!!>

December 2, 2009

Patti,

Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years.

It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities.

Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny!

Please continue to read and ask whatever questions you have. We're here to help!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, December 1, 2009 10:35:47 PMSubject: new to the group

Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!!

December 2, 2009

i think it is a great idea if your daughters want to go with you

whether or not the docs discuss your condition with your family should be your decision

and you need as much support as you can get

i wish my kids would be more involved

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: new to the groupTo: Breathe-Support Date: Wednesday, December 2, 2009, 11:09 AM

Thank you Beth for the encouraging words....... .just knowing there are IPF patients out there that have remained stable for years is just the boost I need right now!

Just wondering if any of you have had any problems with doctors not wanting to discuss your condition with your family.....my two grown daughters want to go with me and my husband to Chicago for my appt. I don't want to annoy the doctor but my girls are very concerned and I really want them there in the room too.

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Thanks for that bruce............I don't know what stage I'm in been several years since dx..I only know I need o2 when I'm mobile........4 usually up 6 6 on inclines..usually 0 to 2 when rested

Since I'm partially paralyzed I get tangled up in the hoses......big mess

Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif">

To: Breathe-Support Sent: Wed, December 2, 2009 1:21:33 PMSubject: Re: new to the group

Stages still wouldn't tell you because the diseases are sounpredictable. Plus we'd need different for all the different forms. Ithink just live the best you can and take nothing for granted at all.Because you could spend forever in whatever you'd call stage 2 or youcould go straight from stage 1 to the end. Biggest thing is avoidingcomplications so that you do make sure you go the complete path.Now, personally, I do sort of have my own mental concept and have usedit in planning my future.First, I think of how I've been since diagnosis. I was immediately onoxygen so no pre-oxygen period for me. Low to moderate oxygen and ableto be pretty functional. 0-5 lpm depending on what I'm doing.Next, I think of the period in which my oxygen needs are considerablyhigher and I'm requiring 6-10 lpm when active. At that point I picturemyself far less able to do certain things but still

able to do many withoxygen.Then, I think of the period of 10 lpm and more when I've lost mostmobility. I try to surround myself at home with my favorite things. Ibring in hospice at the right time as the oxygen requirements increaseand their effectiveness decrease.But I have no idea how long any stage or if I'll see them all. I've justthought ahead of how I want to be at the various levels of the diseaseI've seen many reach.There are studies underway trying to find the keys to predictingprogression but thats still research. Meanwhile we all need to live. Youwere an excellent example with your trip. I personally missed a lot ofstages by not being diagnosed when I should have been. My FVC was 44%and my DLCO was 38% the first time either was ever measured and I wasput on oxygen that same day.>>> Subject: Re: new to the group> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, December 2, 2009, 8:26 AM>>> Ã‚>>>>>>>

Patti,> Welcome to Breathe Support!! It's lousy that youÃ‚ have reason tolook for a group like this but I hope that you find it asÃ‚ helpfulasÃ‚ I have over the last 3 and a half years.> It sounds like you are doing all the right stuff. I'm so happy to hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm inEXACTLY the same condition I was at that time. I've been stable for 3and a half years. We have a member who is I think ten or twelve yearsout from diagnosis and is stable. So the moral of the story is, there isno expiration date tatooed on your fanny!> Please continue to read and ask whatever questions you have.

We'rehere to help!>> Ã‚> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚> Ã‚>>>>>>> From: emma0850 napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 1, 2009 10:35:47 PM> Subject: new to the group>> Ã‚>> Hello everyone.... .I just found this group today and I couldn't behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in my lung bases. Iwent through the entire ordeal of test after test and was told it was somild that they thought it may have been there for years. I continued todo all the follow up tests each year and until now it had remainedunchanged. This past month the tests showed it has now progressed to theentire lung area. My

PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation on the internet and most of the info I read just scares me.They make it sound like a death sentence. Again I am so happy to findthis group!!>

December 2, 2009

Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:

---do you avoid the cold weather?

---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?

---do you take cough medication every day to help with the cough and does it help?

---does exercise seem to help?

---anyone have any luck with herbs, tea or vitamins?

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Thank you MamaSher for your comments.......I too scared my husband to death when I first started reading the internet on IPF.....I immediately bust out in tears and had him in tears too!! I am just overwhelmed with the amount of people on this site that have had this for years.......that is so encouraging!!!

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Patti,My husband and daughter come with me to my appointments. I think it's important to have moral support, and also people to listen and ask questions that you might not think of. Family is important in the care and treatment of this disease, so the more they know, the better. Jst my humble opinion.Kathy IPF 10/09 Type 2 diabetes forever agoSubject: Re: new to the groupTo: Breathe-Support Date: Wednesday, December 2, 2009, 8:09 AM

Thank you Beth for the encouraging words....... .just knowing there are IPF patients out there that have remained stable for years is just the boost I need right now!

Just wondering if any of you have had any problems with doctors not wanting to discuss your condition with your family.....my two grown daughters want to go with me and my husband to Chicago for my appt. I don't want to annoy the doctor but my girls are very concerned and I really want them there in the room too.

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

ï»¿

.... I'm big time laughing out here in Oregon! )

I'm so un-savvy about computers!

Your signature line will depend on what email program you have.

I use Windows and therefore go to Tools, options, and Signatures (at the top). If you see it that far, then let me know. This option may not work for you. MB can probably help with a signature from the web page. I've never used the web page.

Good luck.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group

I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch.

December 2, 2009

Kathy....thank you for your reply....I have decided to take my daughters along to my appt......great advise that they may think of something I may not think to ask....I know I will be very nervous!

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Patti... a good friend, Geeta, in India, is past 13 years now. I think that is correct. She is in a wheelchair but remains so pleasant. do be sure and catch her posts. Her outlook is wonderful.

There are many with a number of years notched on their o2 tanks (lol). I for sure, never thought I would see even 4 years! And yet, here I am.

When I read your post of questions I could 'feel' how anxious you are to find answers. What works for one may not work for another. There are so many variables! You will learn to trust yourself. If it works, don't fix it.

I do avoid people who are ill...especially my little grandkids. They can bring stuff home from from school so easily. It's hard to catch them when they are all 'ok'.

Just keep on keepin' on kiddo and try not to worry and fret about every move and encounter. It's easy to push ourselves over the edge of common sense if stay in high stress most of the time.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group

Thank you MamaSher for your comments.......I too scared my husband to death when I first started reading the internet on IPF.....I immediately bust out in tears and had him in tears too!! I am just overwhelmed with the amount of people on this site that have had this for years.......that is so encouraging!!!

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Patti... No doubt you know this but take a list of questions with you for him to answer.... and write down his answers.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group

Kathy....thank you for your reply....I have decided to take my daughters along to my appt......great advise that they may think of something I may not think to ask....I know I will be very nervous!

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Hi Patti,Being in Phoenix there isn't a whole lot of cold weather to avoid but I know that my Mother (who also had IPF (UIP I believe) and lived in Milwaukee Wisconsin was told to go south for the winter..dry indoors and cold and damp outdoors is not good apparently although we have people all over who live in states with winters.I try very hard to avoid people with things like the flu or bad colds. I too have grandchildren who have yet to kill me. My daughters worry about that more than I do. I'd rather have kisses (on the cheek).I have been coughing more and am going to ask my pulmodudette what she recommends. The Advair and inhalers don't much work as it is the tickle not congestion that gets me going.Excercise is good, Rehab is better. If you can go, do so.I take Imuran, Predinisone, Avandia, Detrol LA, Insulin, Hydraclorathiazide, Zetia, Pravachol, Tricor, Provigil, Prilosec, Trental, Paxil, Fish, Flax and Borage Oil, Cranberry Extract, Multi Vitamin with iron, Valarian Root and calming blend, Magnesium, Zinc and Vitamin D, and Super B vitamins. Do the herbs and vitamins help? My cloresterol is better since I added the Fish, Flax and Borage oil, I had no Vitamin D and now I do and the Valerian helps me sleep. I haven't had a cold/bronchitis etc in two years although I continue to get sinus infections. I think they help and the docs say they can't hurt. I do get all my scripts and vitamins at the same Walgreens so they know everything I'm taking.Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!".">> Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:> > ---do you avoid the cold weather?> > ---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?> > ---do you take cough medication every day to help with the cough and does it help?> > ---does exercise seem to help?> > ---anyone have any luck with herbs, tea or vitamins?> > Patti, 59, Indianapolis, IPF 2007>

December 2, 2009

Oh MY HEAVENS Dyane, I could NEVER take that much medication a day. I grumble now because I take four. If I HAVE to go out and it is below 60 I cover my mouth so I don't get a blast of cold air in my throat.. If it is raining and humid , NOT going anywhere. I have trouble in the bath with humidity. I saw someone is taking Montive (sp?) it is about 40 dollars a bottle and has wonderful berries but not enough for the money AND we do not want to build out immune system because it is already working over time trying to heal out lungs.. therefor the fibrosis. Our immune system thinks something had damaged our lungs and doesn't stop trying to repair them. There is so many things I would like to say about all the vitamins and herbs but I guess yourDr. should talk to you about them.. if they will.God Bless you all and I know we all do what we think is best for us. So keep on keepin on.

Love & PrayersPeggy, IPF 2004

Hi Patti,Being in Phoenix there isn't a whole lot of cold weather to avoid but I know that my Mother (who also had IPF (UIP I believe) and lived in Milwaukee Wisconsin was told to go south for the winter..dry indoors and cold and damp outdoors is not good apparently although we have people all over who live in states with winters.I try very hard to avoid people with things like the flu or bad colds. I too have grandchildren who have yet to kill me. My daughters worry about that more than I do. I'd rather have kisses (on the cheek).I have been coughing more and am going to ask my pulmodudette what she recommends. The Advair and inhalers don't much work as it is the tickle not congestion that gets me going.Excercise is good, Rehab is better. If you can go, do so.I take Imuran, Predinisone, Avandia, Detrol LA, Insulin, Hydraclorathiazide, Zetia, Pravachol, Tricor, Provigil, Prilosec, Trental, Paxil, Fish, Flax and Borage Oil, Cranberry Extract, Multi Vitamin with iron, Valarian Root and calming blend, Magnesium, Zinc and Vitamin D, and Super B vitamins. Do the herbs and vitamins help? My cloresterol is better since I added the Fish, Flax and Borage oil, I had no Vitamin D and now I do and the Valerian helps me sleep. I haven't had a cold/bronchitis etc in two years although I continue to get sinus infections. I think they help and the docs say they can't hurt. I do get all my scripts and vitamins at the same Walgreens so they know everything I'm taking.Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!".">> Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:> > ---do you avoid the cold weather?> > ---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?> > ---do you take cough medication every day to help with the cough and does it help?> > ---does exercise seem to help?> > ---anyone have any luck with herbs, tea or vitamins?> > Patti, 59, Indianapolis, IPF 2007>

December 2, 2009

Bruce,

I missed out on stage one.....In 2006 I had a chest Xray for pneumonia and the Xray tech told me He saw fibrosis, I said is that serious? surprisingly he said yes. I said what should I do and he told me he send the report to my Dr and he'd talk to me but I never heard from him. I had no idea what fibrosis was except when I asked the xray tech he said scaring. I thought oh well, I smoked fro many years I'm not surprised that I have some scaring. So, for three years I did nothing. Then the day I was diagnosed in Jan of 09 I was put on O2.

My doctor said he would put me on pred but, I don't see the benefit at this point. If there were studies that showed that pred would extend the current stage I may evaluate it differently. Oh well,l I guess we'll just have to take our chances one way or another.

Subject: Re: Re: new to the groupTo: Breathe-Support Date: Wednesday, December 2, 2009, 1:34 PM

Thanks for that bruce....... .....I don't know what stage I'm in been several years since dx..I only know I need o2 when I'm mobile...... ..4 usually up 6 6 on inclines..usually 0 to 2 when rested

Since I'm partially paralyzed I get tangled up in the hoses......big mess

Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif">

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 2, 2009 1:21:33 PMSubject: Re: new to the group

Stages still wouldn't tell you because the diseases are sounpredictable. Plus we'd need different for all the different forms. Ithink just live the best you can and take nothing for granted at all.Because you could spend forever in whatever you'd call stage 2 or youcould go straight from stage 1 to the end. Biggest thing is avoidingcomplications so that you do make sure you go the complete path.Now, personally, I do sort of have my own mental concept and have usedit in planning my future.First, I think of how I've been since diagnosis. I was immediately onoxygen so no pre-oxygen period for me. Low to moderate oxygen and ableto be pretty functional. 0-5 lpm depending on what I'm doing.Next, I think of the period in which my oxygen needs are considerablyhigher and I'm requiring 6-10 lpm when active. At that point I picturemyself far less able to do certain things but still

able to do many withoxygen.Then, I think of the period of 10 lpm and more when I've lost mostmobility. I try to surround myself at home with my favorite things. Ibring in hospice at the right time as the oxygen requirements increaseand their effectiveness decrease.But I have no idea how long any stage or if I'll see them all. I've justthought ahead of how I want to be at the various levels of the diseaseI've seen many reach.There are studies underway trying to find the keys to predictingprogression but thats still research. Meanwhile we all need to live. Youwere an excellent example with your trip. I personally missed a lot ofstages by not being diagnosed when I should have been. My FVC was 44%and my DLCO was 38% the first time either was ever measured and I wasput on oxygen that same day.>>> Subject: Re: new to the group> To: Breathe-Support@

yahoogroups. com> Date: Wednesday, December 2, 2009, 8:26 AM>>> Ã‚>>>>>>> Patti,> Welcome to Breathe Support!! It's lousy that youÃ‚ have reason tolook for a group like this but I hope that you find it asÃ‚ helpfulasÃ‚ I have over the last 3 and a half years.> It sounds like you are doing all the right stuff. I'm so happy to hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm inEXACTLY the same condition I was at that time. I've been stable for 3and a half years. We have a member who is I think ten or twelve yearsout from diagnosis and is stable. So the

moral of the story is, there isno expiration date tatooed on your fanny!> Please continue to read and ask whatever questions you have. We'rehere to help!>> Ã‚> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Ã‚> Ã‚>>>>>>> From: emma0850 napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 1, 2009 10:35:47 PM> Subject: new to the group>> Ã‚>> Hello everyone.... .I just found this group today and I couldn't behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in my lung bases. Iwent through the entire ordeal of test after test and was told it was somild that they thought it may have been there for years. I continued todo all the follow up

tests each year and until now it had remainedunchanged. This past month the tests showed it has now progressed to theentire lung area. My PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation on the internet and most of the info I read just scares me.They make it sound like a death sentence. Again I am so happy to findthis group!!>

December 2, 2009

well darn I'll ask her

Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif">

To: Breathe-Support Sent: Wed, December 2, 2009 2:24:16 PMSubject: Re: Re: new to the group

ï»¿ .... I'm big time laughing out here in Oregon! )

I'm so un-savvy about computers!

Your signature line will depend on what email program you have.

I use Windows and therefore go to Tools, options, and Signatures (at the top). If you see it that far, then let me know. This option may not work for you. MB can probably help with a signature from the web page. I've never used the web page.

Good luck.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group

I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch.

December 2, 2009

Peggy,Yeah I keep Walgreens going just by myself! LOL This is why I have to keep working. I have a $4000 high deductible HSA and I'm usually through that $4000 by March first just on Meds. My insulin alone is over $400 a month. I really hate all the meds but they do work for what they are prescribed for. Don't get me started on the cost of drugs in this country, I'll have a stroke! The vitamins, well like I said the doc says they can't hurt. Not working or being on Medicare scares the living hell out of me. Which drug should I give up? The insulin and avandia are for the diabetes (since 1996). The pravachol, zetia and tricor are all for high triglyerides and cloresterol (since the late 80's). The Detrol (2008)helps me not pee down my leg! The provigil(2009) keeps me from falling asleep at the wheel. The trental (2008)treats my lipodermatosclerosis and helps grow capillaries so may help my lungs. The pred and imuran (2009)we all know help hopefully my lungs. And the Paxil (since 1996) keeps me as sane as possible.I'd be in that donut hole so fast it wouldn't be funny. Of course in two months I'd be out again but I'd still be paying out $4000. If I was a horse they would have shot me long long ago LOL Some days the only thing that keeps me going is the thought of my grandkids and kids. All I can think is that in heaven no cough, no 02, no drugs, no allergies, no pain. Some days I really want to go soon, some not so much. I would buy better (purer) vitamins if I could afford that too but oh well. You have a wonderful day your Royal Highness Wish I had your cough medicine:)Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> > >> > > Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:> > > > > > ---do you avoid the cold weather?> > > > > > ---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?> > > > > > ---do you take cough medication every day to help with the cough and does it help?> > > > > > ---does exercise seem to help?> > > > > > ---anyone have any luck with herbs, tea or vitamins?> > > > > > Patti, 59, Indianapolis, IPF 2007> > >> >>

December 2, 2009

Patti,

I was dx in June 09 so I am still in the learning stage also. My PF is possibly caused by medication taken for bladder infections. However, that is a wait and see. I m not on medication or O2.

I am responding to the exercise portion of your question. I definitely feel better after exercising. I have learned breathing techniques from Yoga (there are some great breathing tapes you can do at home) I apply those techniques to certain exercise machines at the gym. Also, I take a yoga class once a week.

Hot tea relieves mucous temporarily. Not sure that there is any long term benefit but it feels good.

Bettye Kline dx PF 6 09 70 MS

To: Breathe-Support Sent: Wed, December 2, 2009 12:48:56 PMSubject: Re: Re: new to the group

Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:

---do you avoid the cold weather?

---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?

---do you take cough medication every day to help with the cough and does it help?

---does exercise seem to help?

---anyone have any luck with herbs, tea or vitamins?

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Patti,

Personally I would highly recommend taking at least one person with you to these appointments. It helps to have someone with you who can take notes, help you remember the questions you wanted to ask and sometimes ask questions that you wouldn't have thought of yourself.

How many people you take with you is up to you. In my experience at Columbia in NY and at Duke the consutation rooms are fairly small. Just take limited space into consideration, knowing that the doctor and likely an assitant will also be in the room. That said, it's a wonderful thing that your husband and your daughers all want to be with you. It is good to feel supported and loved.

I would let them know when you make your appointment that you have three family members that you want with you when you discuss your situation with the doctor. If they know in advance what you want you are much more likely to have your needs and wishes met.

Let us know how it goes.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, December 2, 2009 11:09:20 AMSubject: Re: new to the group

Thank you Beth for the encouraging words....... .just knowing there are IPF patients out there that have remained stable for years is just the boost I need right now!

Just wondering if any of you have had any problems with doctors not wanting to discuss your condition with your family.....my two grown daughters want to go with me and my husband to Chicago for my appt. I don't want to annoy the doctor but my girls are very concerned and I really want them there in the room too.

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

Bob,

As Bruce pointed out it's difficult/impossible to get a handle on these issues with this type of mixed group. While we all have lung scarring (pulmonary fibrosis) we all have it because of different situations. I have fibrotic nsip with a life expectancy in excess of 10-12 years. (God willing) My disease was caused by a connective tissue disease which gives the doctors something to treat. We have people in the group with hypersensitivity pneumonitis whose fibrosis was caused by an extreme allergic reaction, we have people with familial IPF, we have those with IPF/UIP etc etc. All of these conditions are different, run a different course and have varied life expectancies and treatment options.

Honestly the best thing to do is take excellent care of yourself, live your best life (as you are doing!) and try not to worry over much about what might come next.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, December 2, 2009 10:52:51 AMSubject: Re: new to the group

Beth. Bruce,

Also we would be able to better get a grasp on Pred or no Pred ie Do people who took pred stay in a stage longer than a non Pred person?

Bob

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 2, 2009, 8:26 AM

Patti,

Welcome to Breathe Support!! It's lousy that you have reason to look for a group like this but I hope that you find it as helpful as I have over the last 3 and a half years.

It sounds like you are doing all the right stuff. I'm so happy to hear you are going to the University of Chicago. They have a great reputation and I'm certain you will learn a ton regarding your own situation and how to approach the new realities.

Take things one step at a time and please don't panic about what you read on the internet. I was diagnosed 3 and a half years ago and I'm in EXACTLY the same condition I was at that time. I've been stable for 3 and a half years. We have a member who is I think ten or twelve years out from diagnosis and is stable. So the moral of the story is, there is no expiration date tatooed on your fanny!

Please continue to read and ask whatever questions you have. We're here to help!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: emma0850 <napa73 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tue, December 1, 2009 10:35:47 PMSubject: new to the group

Hello everyone.... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this

group!!

December 2, 2009

Sher/,

Setting up a signature depends entirely on the email program that you use. There is no way to set up a permanant signature when posting from the groups website.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, December 2, 2009 2:24:16 PMSubject: Re: Re: new to the group

ï»¿ .... I'm big time laughing out here in Oregon! )

I'm so un-savvy about computers!

Your signature line will depend on what email program you have.

I use Windows and therefore go to Tools, options, and Signatures (at the top). If you see it that far, then let me know. This option may not work for you. MB can probably help with a signature from the web page. I've never used the web page.

Good luck.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group

I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch.

December 2, 2009

Patti:

If you have one, you might take along a small tape recorder (and ask the doc if s/he minds your using it). It's really helped me later when I think "now what did he say?".

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Wed, December 2, 2009 2:41:28 PMSubject: Re: new to the group

Kathy....thank you for your reply....I have decided to take my daughters along to my appt......great advise that they may think of something I may not think to ask....I know I will be very nervous!

Patti, 59, Indianapolis, IPF 2007

December 2, 2009

ï»¿

Thanks MB... I was afraid of that. I know a signature can't be set up from the web.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group

I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch.

December 3, 2009

i'm not paralyzed and i get tangled up in the hoses

about a month ago i fell flat on my face when i tripped on the hose

had a bad case of whiplash the following day