Re: Dawn

[Guest guest]

Dawn

It was good to talk to you in chat last night. Gish we were the only ones there but we had our own little party didn't we. I bet your hubby is lots of fun to be around.

Shae's room is coming along but I still have lots that I am doing to it. It will be cute when I am done.

As for the BP I think it is doing better. I haven't had the rotten head aches and in general feel much better. I don't know if it is due to the BP meds or the Imuran(real stuff) is kicking in. At any rate I am willing to take feeling good.

Take care and have a great weekend.

Lots of love

Glenda

glenda, hows the bp doing, how about shae's room. i haven't posted much, but now that fall is here look out, but i have been reading most of the post.

[Guest guest]

Dawn, I was thinking why wasn't the pred taking care of the inflamation. LOL I can't up the pred right now with all of the water retention and my heart. The fluid is getting around the heart and they have to get it gone. They THINK, notice I said THINK ... it's the pred. I lowered to 18mg yesterday and have lost 4 pounds today, so maybe it is the pred and not my heart or kidney's. Will just have to wait.

Good idea though. I was wondering if the inflamation of the bladder could be RP. My dr said no. The rheumy said that the bladder is not collegen or cartilage. Said it would affect the kidneys not the bladder. Does anyone know if this is right? See how well I trust the rheumy. LOL

Will see if the Macrobid takes car of it. Hopefully he is right.

hugs

got to thinking if this is inflamation, what not up your predd to a high dose and see what happens, pred is suppose to get rid of inflamation. maybe the anibitotics alone are not doing the job and you need more pred. I have had flares that I have had to have as much as 80 mg of pred for a while. dawn

[Guest guest]

Gosh, I can't think of a single thing to donate.... hmmm... nope..nothing here. lOL I'll keep looking. LOL

I think I could donate my forehead....

[Guest guest]

Dawn,

I have never met you but I will call the Dr. for you and tell him

that you have the skinniest voice I have ever heard.

Seriously I will be sending special prayers for the right Dr. to

come into your life.

My rheummy has never said a word about weight to me. The 1000mg

predisone drip that I was on put almost 40lbs extra on me. And he

was there for every pound I gained.

His office has the scale (havent figured out why) right in the hall

for everyone to see. Every visit the nurse stops at it for me to

weigh and I just keep on walking. The whole time I am saying

" MY DR. DOESNT WANT ME TO HAVE STRESS AND I AM JUST FOLLOWING HIS

ORDERS " . HAHAHA

She is laughing and my husband who always comes with me is trying to

get me on the scale and causing a scene.

So far the Dr. has never questioned how much I weigh. I guess he

figures with everything else going on it is not that big of a issue.

Is your Dr. a big or little man? Sometimes that has alot to do with

it.

Oh well hang in there and dont let the Dr. who is suppose to help

you add to your stress and make you sicker.

Love and prayers going your way NANCY

[Guest guest]

Dawn

Try not to enjoy that snow too much!LOL Gish you guys can keep it all there. I am so thankful I live here. We hardly ever get snow in the winter and if we do it is only a few inches which will melt off before the day is out. Enjoy your day off!

Lots of LoveGlenda

[Guest guest]

Dawn

Thanks so much for the birthday day song. You are the greatest!

How are you doing? Hopefully better than the last time I read.

Lots of LoveGlenda

[Guest guest]

Thanks for the info Dawn. Boy you are a brave on with this statement. LOL

hugs

Kind of like Peanut butter and jelly.

[Guest guest]

Thank you, so does that mean since my damage has already been done it is not a progressive issue, meaning it has already happened and barring any other issues to put me into the IPF group it will not progress, unless I get more radiation or something further to scar more? I don't seem to understand why "how" we got here matters as far as treatments. Because the origin is unknown in IPF how does that make the scarring more available to medications vs. PF like mine? I would just think scarring is scarring regardless of how it got there, as you can see I have a lot of questions. I will be seeing a new pulm. doc later this month so maybe he will help as well. Thanks for you availability and help, this is a terrific group! Dawn

To: Breathe-Support Sent: Thu, November 12, 2009 6:10:29 PMSubject: Dawn

Your post came to the board just fine. At any time you may post to the board using this email address: Breathe-Support@ yahoogroups. com.

You are correct, pulmonary fibrosis is referred to as IPF when the cause is unknown. There are something in the neighborhood of 200 different interstitial lung diseases that cause pulmonary fibrosis (lung scarring). Some have treatments that are effective and other types don't. If you have pf from radiation then the damage is done and cannot be undone. There may eventually be a way to undo scarring but that's not in sight at present.

Pirfenidone is a medication that is as yet not approved by the FDA for treating pulmonary fibrosis. The clinical trials were limited to those with IPF and were inconclusive. However the manufacturer, Intermune, has applied to the FDA for approval which would allow Pirfenidone to be used to treat IPF. It is not however intended to undo scarring. At best it may slow the progression of the disease in some people. Assuming your disease is stable unlikely that it would be prescribed for you or do anything for you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dawn Urso <dawn.urso (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 5:17:59 PMSubject: Re: Re: Book

I am so confused, sorry. Is this how I can answer/comment to the entire group or do I have to answer each person individually who responded to me? The posts are now in an "inbox" format but I was also looking at them through "my groups". Anyway, I hope this works. Since I am new to this whole thing I just asked Leanne to send me that informational packet. If I'm doing this wrong please someone let me know. Is there a "how to for dummies" for yahoo groups???

Cees, you have a terrific project to create and what an oppotunity to make a difference. I'm on board for writing a story and think the questionnaire is a great idea. I don't mind using my real name it's already out there for a lot of cancer & BMT sites. The more people we can reach out to the better, you will be a force to be reckoned with!!!!

Thank you so much to the entire group for sharing and helping me see that I am not alone in this crazy thing. Your words of encouragement and life experience are truly priceless, thanks.

Now for another question, IPF and PF. From what I understand IPF has an unknown cause and PF a known cause? Does that change medications that can be used to help? Like mine is from radiation treatments.. PF means scarring, how can anything undo that? What is Pirfenidone? I saw posts someplace but I can't find them now. Is that for both, IPF & PF?

Thanks, Dawn

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 4:53:37 PMSubject: Re: Re: Book

Oh MamaSher! Surely you know that to misspell is human. Jack79/IPF - UIP/dx06/05 Maine

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 8:18:34 PMSubject: Re: Re: Book

 boy oh boy, I sure misspelled fictitious! Sorry gang!

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

Re: Book Jack,I wholeheartedly agree with you about the heart-wrenching posts, "told from the heart," that would make this book a huge success among the general public. That's why I wrote that most members could just cut & paste previous posts to tell their stories because they were already so good. But Barbara & Beth make a really good point. Just because you & I have been writing on demand our whole lives doesn't mean the general public feels comfortable doing it. I think you said you taught college students like I did. Maybe your students were already good writing majors, but many of mine weren't, so I totally understand how people can be intimidated by a writing project. That's why I think a Questionnaire is a great idea. For one thing, we'll get responses from a lot more people, which I know you're hoping to see. And who knows? Sometimes just having a question to

answer gets the juices flowing & stories come pouring out.So go for it, Barbara. I can't wait to see the Questionnaire. I think that's one thing that really can be posted on the Files section of our website, so everyone can download a copy. I would ask that you run it past a couple of us on the committee before you submit it though. Mostly because we might have an idea for another question to include & the read-only Files section can't easily be edited. For example, I think we should include a question asking permission to possibly use info from people's past postings with the caveat that they will have final approval over any edited version that's attributed to them. Whaddya ya'll think?Cees, S CalifPF 10/08> > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do.> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> > > in a rehab program 3x a week and was told I have a week diaphragm too> > > due to being laid up after some stomach surgery, so I am going to try> > > singing lessons to help me breath differently. I am so tired from> > > breathing, it takes so much energy. I am in a support

group for the> > > cancer and in private therapy for everything else. But when does your> > > quality of life take priority over trying> > > > endlessly to beat all these> > > health issues? I have a king of a husband and a huge loving support> > > system but none of that can help me breath any better. Sorry for> > > complaining so soon, it's just so tough and I know someone out there has> > > walked in my shoes, I just need to know how do you keep on walking???> > > >> > >> >>

[Guest guest]

Dawn,

There is no way for anyone here to tell you whether or not your fibrosis will progress. That's something you should discuss with your pulmonologist when you see him/her.

There is no type of fibrosis where the scarring is more 'available' to medication. Once the scarring is there it cannot be erased.

Here's a way to think of it. Pulmonary fibrosis or lung scarring can be considered a symptom or a complication of some other disease. In my case my pf is a complication of dermatomyositis an auto-immune connective tissue disease.

Some pulmonary fibrosis is caused by auto-immune disease, lupus for example. In that case treating the lupus can often slow down or stop the progression of the pulmonary fibrosis.

There is a pulmonary fibrosis caused by a severe allergic reaction. It is called Hypersensitivity Pneumonitis. Finding and eliminating the allergen can sometimes halt the progression of the fibrosis.

There is no one size fits all treatment. We're all different and how you're treated very much depends on how you got to where you are.

This is why it is really vital in my opinion to be evaluated at a teaching hospital with a interstitial lung disease department. They are much much more knowledgable about ILD's and pulmonary fibrosis than most community based pulmonologists. If you go to www.ipfnet.org you will find a map with a list of 22 such medical centers across the US.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, November 12, 2009 6:30:27 PMSubject: Re: Dawn

Thank you, so does that mean since my damage has already been done it is not a progressive issue, meaning it has already happened and barring any other issues to put me into the IPF group it will not progress, unless I get more radiation or something further to scar more? I don't seem to understand why "how" we got here matters as far as treatments. Because the origin is unknown in IPF how does that make the scarring more available to medications vs. PF like mine? I would just think scarring is scarring regardless of how it got there, as you can see I have a lot of questions. I will be seeing a new pulm. doc later this month so maybe he will help as well. Thanks for you availability and help, this is a terrific group! Dawn

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 6:10:29 PMSubject: Dawn

Your post came to the board just fine. At any time you may post to the board using this email address: Breathe-Support@ yahoogroups. com.

You are correct, pulmonary fibrosis is referred to as IPF when the cause is unknown. There are something in the neighborhood of 200 different interstitial lung diseases that cause pulmonary fibrosis (lung scarring). Some have treatments that are effective and other types don't. If you have pf from radiation then the damage is done and cannot be undone. There may eventually be a way to undo scarring but that's not in sight at present.

Pirfenidone is a medication that is as yet not approved by the FDA for treating pulmonary fibrosis. The clinical trials were limited to those with IPF and were inconclusive. However the manufacturer, Intermune, has applied to the FDA for approval which would allow Pirfenidone to be used to treat IPF. It is not however intended to undo scarring. At best it may slow the progression of the disease in some people. Assuming your disease is stable unlikely that it would be prescribed for you or do anything for you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dawn Urso <dawn.urso (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 5:17:59 PMSubject: Re: Re: Book

I am so confused, sorry. Is this how I can answer/comment to the entire group or do I have to answer each person individually who responded to me? The posts are now in an "inbox" format but I was also looking at them through "my groups". Anyway, I hope this works. Since I am new to this whole thing I just asked Leanne to send me that informational packet. If I'm doing this wrong please someone let me know. Is there a "how to for dummies" for yahoo groups???

Cees, you have a terrific project to create and what an oppotunity to make a difference. I'm on board for writing a story and think the questionnaire is a great idea. I don't mind using my real name it's already out there for a lot of cancer & BMT sites. The more people we can reach out to the better, you will be a force to be reckoned with!!!!

Thank you so much to the entire group for sharing and helping me see that I am not alone in this crazy thing. Your words of encouragement and life experience are truly priceless, thanks.

Now for another question, IPF and PF. From what I understand IPF has an unknown cause and PF a known cause? Does that change medications that can be used to help? Like mine is from radiation treatments.. PF means scarring, how can anything undo that? What is Pirfenidone? I saw posts someplace but I can't find them now. Is that for both, IPF & PF?

Thanks, Dawn

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 4:53:37 PMSubject: Re: Re: Book

Oh MamaSher! Surely you know that to misspell is human. Jack79/IPF - UIP/dx06/05 Maine

From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 8:18:34 PMSubject: Re: Re: Book

 boy oh boy, I sure misspelled fictitious! Sorry gang!

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

Re: Book Jack,I wholeheartedly agree with you about the heart-wrenching posts, "told from the heart," that would make this book a huge success among the general public. That's why I wrote that most members could just cut & paste previous posts to tell their stories because they were already so good. But Barbara & Beth make a really good point. Just because you & I have been writing on demand our whole lives doesn't mean the general public feels comfortable doing it. I think you said you taught college students like I did. Maybe your students were already good writing majors, but many of mine weren't, so I totally understand how people can be intimidated by a writing project. That's why I think a Questionnaire is a great idea. For one thing, we'll get responses from a lot more people, which I know you're hoping to see. And who knows? Sometimes just having a question to

answer gets the juices flowing & stories come pouring out.So go for it, Barbara. I can't wait to see the Questionnaire. I think that's one thing that really can be posted on the Files section of our website, so everyone can download a copy. I would ask that you run it past a couple of us on the committee before you submit it though. Mostly because we might have an idea for another question to include & the read-only Files section can't easily be edited. For example, I think we should include a question asking permission to possibly use info from people's past postings with the caveat that they will have final approval over any edited version that's attributed to them. Whaddya ya'll think?Cees, S CalifPF 10/08> > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do.> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> > > in a rehab program 3x a week and was told I have a week diaphragm too> > > due to being laid up after some stomach surgery, so I am going to try> > > singing lessons to help me breath differently. I am so tired from> > > breathing, it takes so much energy. I am in a support

group for the> > > cancer and in private therapy for everything else. But when does your> > > quality of life take priority over trying> > > > endlessly to beat all these> > > health issues? I have a king of a husband and a huge loving support> > > system but none of that can help me breath any better. Sorry for> > > complaining so soon, it's just so tough and I know someone out there has> > > walked in my shoes, I just need to know how do you keep on walking???> > > >> > >> >>

[Guest guest]

Beth,Actually there is a logic formula for that last bit that I vaguely remember from college LOL See you made me smile!Dyane > > >>> > >>> > >>> > > >> > >>> > >>> > >>> > > > Hi, I'm new here and need to hear from others who feel as> old as I do.> > >>> > >>> > >>> > > I'm only 43 but my body is about 20 years older. I've battled> Hodgkin's> > >>> > >>> > >>> > > Lymphoma 7x since 1995 and am still in the fight. Now I have> PF, am on> > >>> > >>> > >>> > > oxygen 24/7, use a bi-pap and get out of breath with any> movement. I am> > >>> > >>> > >>> > > in a rehab program 3x a week and was told I have a week> diaphragm too> > >>> > >>> > >>> > > due to being laid up after some stomach surgery, so I am going> to try> > >>> > >>> > >>> > > singing lessons to help me breath differently. I am so tired> from> > >>> > >>> > >>> > > breathing, it takes so much energy. I am in a support group> for the> > >>> > >>> > >>> > > cancer and in private therapy for everything else. But when> does your> > >>> > >>> > >>> > > quality of life take priority over trying> > >>> > >>> > >>> >> > >>> > >>> > >>> > endlessly to beat all these> > >>> > >>> > >>> > > health issues? I have a king of a husband and a huge loving> support> > >>> > >>> > >>> > > system but none of that can help me breath any better. Sorry> for> > >>> > >>> > >>> > > complaining so soon, it's just so tough and I know someone out> there has> > >>> > >>> > >>> > > walked in my shoes, I just need to know how do you keep on> walking???> > >>> > >>> > >>> > > >> > >>> > >>> > >>> > >> > >>> > >>> > >>> >> > >>> > >>> > >>>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>Â Â Â Â> > >>> > >>Â Â Â Â> > >>> > >>> > >>> > >>Â Â Â Â> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >> >>