New Member

[Guest guest]

Hello , I am going to tag on to your message and say something everyone would not agree with. This beast that we have does not treat everyone alike. Nobody can say for sure what you can expect down the road. They don't know. Some progress faster than others. I think the group would like for you to stay in touch and talk as much as you want. It helps me. We had a good chat last night. Talked for an hour and it made me feel good. I think everybody is sharing some of the same symptons. Swollen feet and legs. There are a lot of members that are not talking. Welcome to the group and talk as much as you like. Grey

new member

I'm new at this so I will do my best to send this in. This is the first time I've joined a group on line. Let me introduce myself. My name is Arnold i am 57yrs old and I was diagnosed with ipf in july 2005. I don't know what to expect from this I hope you can give me some insite into what I am facing. As well as my ilness I have to cope with my husband being in heart failure so any advise will be appreciated

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[Guest guest]

Hey, Rita: Welcome to the group. I haven't been here long, but I have gained a wealth of information. To put it bluntly that nurse sounds like an idiot. IPF is worse than PF. Why, because the dr's are not sure what causes it. PF is usually related to another disease such as lupus. As for the chat room, I haven't gone in there. I just enjoy reading these posts and putting my two cents worth in. The people here are great. I hope you will enjoy it as much as I do. BarbRita Eisenstat wrote: Hi All: I'm a new member, Rita, and I can't figure out how to get back into the chat room in order to contribute -- so help! I am also having difficulty deleting the Digests -- I delete and

they come back! I've done both delete and empty, but they keep coming back. Any suggestions? Perhaps it has to do with hotmail, because I don't use the yahoo address for my emails. So I'm sending this email to the breathe-support at yahoo.com and hope it gets where it's supposed to. About me: I was diagnosed with COPD in 2001, with 25% loss of function. By 2002, it was 38%, in 2003, it was 48% and I've stabilized there. Medications didn't help any with breathing. I was exercising, experienced more chest pain than usual, and decided it was time to visit a pulmonologist. I was sent to a cardiologist, had bunches and bunches of tests, all negative for any problem. (My arteries are healthy!) During this time, I found an article on the net that talked about chest wall pain and trigger points -- and I had plenty of trigger points. I massage my chest regularly now, paying particular attention to those areas of sharp pain. I work them

out. My chest pain has stopped nearly completely. I was also having difficulty with breathing and feeling like I was suffocating --- turns out the purple pills I was given for GERD were not helping me, and I was really having a problem with stomach motility. My GERD medication was changed to Previcid, and all the pressure I was feeling has gone. So, I feel a heck of a lot better. Regarding my lungs, tho. The pulmonologist initially told me I didn't have COPD, but IPF. He explained the difference between COPD and IPF. He said I didn't need any medication. I didn't really understand, so I called the office and asked to speak to him about the diagnosis. The nurse and I played phone tag, until she left a message saying I should check the diagnosis out on the web, and I would learn everything thing I wanted to know. Just about every site I visited gave a grim prognosis -- between 3 to 6 years survival

rate after diagnosis. Scared the heck out of me, for sure! When I called the office, I left a nasty message. The nurse called me back, telling me, "It's only idiopathic, so it's not that bad." I think she's not there anymore. My breathing function remains about the same, and my oximeter readings vary from 94% to 97%. Taking showers exhausts me and I shake like a leaf for awhile after, and climbing stairs is pure hell! And I can't talk and walk at the same time. Other than that, I seem to be doing very well. I am to be rechecked at the end of July. The doc told me during my last visit that I have emphysema and IPF. I'm thinking about finding another doctor, but the choices are rather limited in my area. I'm guessing my lungs are a mess and just haven't gotten around to telling me about it, at least not to any great degree. Sometimes, 'tho, I do feel like I'm a body just waiting for a germ to catch up to!

That's sort of scary. I live at a higher elevation (about 3500 ft., in the Mt. Shasta, CA, area) and I know I will need to move soon to a lower elevation. I'm not looking forward to that at all! I love the mountain air, the cold and crisp nights and the lack of traffic, hoards of people, and the noise of the cities. But, I also realize I need to be near medical facilities when this disease take a firm hold of me. In the meantime, I do a lot of volunteer work, and recently I've taken up quilting. I figured that if I ever need to be on oxygen, or get weak and can't get around much, then at least I have a hobby where I can do all the buying via the telephone. I look forward to belonging to this group, and I welcome the chance to finally learn how to 'do' a chat room. I had joined, then left town, so I didn't have the opportunity to join the telephone chat, but I plan to at the next opportunity. Rita With MSN Spaces email straight to your blog. Upload jokes, photos and more. It's free!

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[Guest guest]

Hi Rita, I'm pretty new to the group too. I wanted to comment on your email with respect to what I've been through that might help some. I'm sure doctors diagnose differently, but here's what I've experienced with mine. My o2 is usually 91-94 unless I exercise and then it will drop to 85 or so. Similar to you I get exhausted doing everything...even tying my shoes. In addition any exercise I do at all sets off coughing fits which are major league painful. I've taken the pulmonary/breathing tests and my test results are hanging in there pretty good, and that doesn't correlate with my health at all. Wierd. I was originally diagnosed with acid reflux or possible asthma in 02, put through a myriad of tests only to conclude that I was just needing to adjust to the altitude here. I live in Colorado at 7000'. The coughing persisted as an increasingly difficult time doing any thing physical at all. I couldn't even mow the lawn

in under 1/2 a day. Finally in 2005, friends and family forced me back in to see the doctor because of my coughing. An Xray was taken and preliminary diagnosis was PF. My doctor sent me to a pulmonologist (the same guy that thought I had asthma) and he sent me to a thorascic surgeon who did a very invasive lung biopsy confirming the disease. I figure I've had the disease for about 4 years now. My o2 is normal, my pulmonary breathing tests are okay, and my heart healthy. I still cough like crazy and get exhausted walking from my front doorstep to curb and back, but I'm still here. They don't have me on any medication, other than Lyrica which is for the nerve damage pain that resulted from the surgery on my lungs. The doctor said he could prescribe steroids, but said it only helped in about 15% of the patients using it. I just take percoset for the chest pain and live life as well as I can. I'm hoping not to move from my home in Colorado, but would

if my doctor thought it would help. I definitely have to stay out of the cold air. Don't get discouraged. I've only written to encourage you to knowing that there are some of us that have been coping with this disease for 4 years now and conditions don't always worsen. They can also level out and remain stable as well. I hope and pray for the best for you,JimRita Eisenstat wrote: Hi All: I'm a new member, Rita, and I can't figure out how to get back into the chat room in order to contribute -- so help! I am also having difficulty deleting the Digests -- I delete and they come back! I've done both delete and empty, but they keep coming back. Any suggestions? Perhaps it has to do with hotmail, because

I don't use the yahoo address for my emails. So I'm sending this email to the breathe-support at yahoo.com and hope it gets where it's supposed to. About me: I was diagnosed with COPD in 2001, with 25% loss of function. By 2002, it was 38%, in 2003, it was 48% and I've stabilized there. Medications didn't help any with breathing. I was exercising, experienced more chest pain than usual, and decided it was time to visit a pulmonologist. I was sent to a cardiologist, had bunches and bunches of tests, all negative for any problem. (My arteries are healthy!) During this time, I found an article on the net that talked about chest wall pain and trigger points -- and I had plenty of trigger points. I massage my chest regularly now, paying particular attention to those areas of sharp pain. I work them out. My chest pain has stopped nearly completely. I was also having difficulty with breathing and feeling like I was suffocating

--- turns out the purple pills I was given for GERD were not helping me, and I was really having a problem with stomach motility. My GERD medication was changed to Previcid, and all the pressure I was feeling has gone. So, I feel a heck of a lot better. Regarding my lungs, tho. The pulmonologist initially told me I didn't have COPD, but IPF. He explained the difference between COPD and IPF. He said I didn't need any medication. I didn't really understand, so I called the office and asked to speak to him about the diagnosis. The nurse and I played phone tag, until she left a message saying I should check the diagnosis out on the web, and I would learn everything thing I wanted to know. Just about every site I visited gave a grim prognosis -- between 3 to 6 years survival rate after diagnosis. Scared the heck out of me, for sure! When I called the office, I left a nasty message. The nurse called me back, telling

me, "It's only idiopathic, so it's not that bad." I think she's not there anymore. My breathing function remains about the same, and my oximeter readings vary from 94% to 97%. Taking showers exhausts me and I shake like a leaf for awhile after, and climbing stairs is pure hell! And I can't talk and walk at the same time. Other than that, I seem to be doing very well. I am to be rechecked at the end of July. The doc told me during my last visit that I have emphysema and IPF. I'm thinking about finding another doctor, but the choices are rather limited in my area. I'm guessing my lungs are a mess and just haven't gotten around to telling me about it, at least not to any great degree. Sometimes, 'tho, I do feel like I'm a body just waiting for a germ to catch up to! That's sort of scary. I live at a higher elevation (about 3500 ft., in the Mt. Shasta, CA, area) and I know I will need to move soon to

a lower elevation. I'm not looking forward to that at all! I love the mountain air, the cold and crisp nights and the lack of traffic, hoards of people, and the noise of the cities. But, I also realize I need to be near medical facilities when this disease take a firm hold of me. In the meantime, I do a lot of volunteer work, and recently I've taken up quilting. I figured that if I ever need to be on oxygen, or get weak and can't get around much, then at least I have a hobby where I can do all the buying via the telephone. I look forward to belonging to this group, and I welcome the chance to finally learn how to 'do' a chat room. I had joined, then left town, so I didn't have the opportunity to join the telephone chat, but I plan to at the next opportunity. Rita With MSN Spaces email straight to your blog.

Upload jokes, photos and more. It's free! "The difference between genius and stupidity is that genius has its limits." -Albert Einstein-

[Guest guest]

Hi Benita,

Welcome to the PF group. My name is Joyce and I have PF secondary to Lupus. Another member Ginny also has Lupus. I would be glad to be of help to you and to hear of your treatment plan.

If you want to e-mail me that would be fine...or just post. There is lots of good info here....and really sweet, kind people.

Hugs,

Joyce >> Name? Benita > > Age? 39 years old> > When were you diagnosed? I was diagnosed in March of 2003> > On Oxygen? Yes 3 liters> > If on oxygen, how long? How many liters?> > Did you go through pulmonary rehab? No, I never heard of that before> > Do you participate in a pf face-to-face support group? yes, at the lupus foundation> > Smoker? not now, but when 25 and younger> > Grew up in a smoke-filled environment? yes> > Husband/Wife? no> > Children? 2 girls> > Pets? a female cat and a male guinea pig> > Favorite Movie? horror and drama> > Favorite Food/s? fish> > Favorite Holiday? I love all the holidays> > Favorite Book? no favorite book> > What do you like to do in your spare time? listen to soft music, play board games > Caregiver Profile Name?> Age?> Whom are you taking care of?> How long have you been taking care of this person?> Is there anything that you need?> Do you participate in a pf face-to-face support group?> Married?> Children?> Pets?> Favorite Movie?> Favorite Food/s?> Favorite Holiday> Favorite Book?> What do you like to do in your spare time?> > > ---------------------------------> Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.>

[Guest guest]

Hi Sher, Yep you've done it right. Welcome to our group. You'll find support here from all the group. Just ask and we'll answer. God Bless You. Peggy

on 5/7/06 1:56 PM, Sher at bofus@... wrote:

I'm having trouble getting around here. I'm posting to see if I'm

doing it right.

I was diagnosed with IPF about two weeks ago. Glad to find you.

Sher

[Guest guest]

> I'm having trouble getting around here. I'm posting to see if I'm

> doing it right.

> I was diagnosed with IPF about two weeks ago. Glad to find you.

> Sher

>

> Maybe this is what I do to jump in here. Wonder if I'll find YOUR

reply???

>

>

>

>

[Guest guest]

Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?

My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

[Guest guest]

Sher, Trust me your not a pest. We all start with a lot of questions.

I never go to the group site, I only post from here. If I think I miss something I will go to the web site.

Several of us take NAC My Dr. told me it helps with the cough and phlegm. I'm sure you'll hear from others about it too. God Bless Peggy

on 5/7/06 6:41 PM, Sher K Bauman at bofus@... wrote:

Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?

My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

[Guest guest]

Sher, Several of us are on the med your Dr. put you on. It is available on line at a reasonable price. We call it NAC. What dosage did the Dr. recommend for you? Some are taking 3-----600mg tabs a day. First I've heard of a doctor recommending it. Keep us posted. Have you heard of neprinol? Look it up. The people that sell it like it a lot. Sold on the web. Grey

Re: New member

Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?

My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

[Guest guest]

Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg.

I don't know about nepronil but will look it up.

Thanks.

GNC...the Nutrition store has it also for $12.95 I take 3-600mgs a day, too.

kiss kiss,

~Ginger~

[Guest guest]

because otherwise it is unregulated.

Sweet Joyce,

What does the term unregulated mean regarding NAC. I must have been applying more lipstick for more kisses and missed that post.

kiss kiss,

~Ginger~

[Guest guest]

Sher,

Sorry you are here, but glad you are here. This is a great site for support and good advice and information. Stay tuned and click around, you will get it. Go back and read some of the back posts. Lots of info. Especially from P and Leanne.

Welcome,

Joyce >> I'm having trouble getting around here. I'm posting to see if I'm > doing it right.> I was diagnosed with IPF about two weeks ago. Glad to find you.> Sher>

[Guest guest]

Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg.

I don't know about nepronil but will look it up.

Thanks.

Re: New member

Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?

My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

[Guest guest]

Yes, I'm beginning to see that posting from here is so much easier. I think the online board is difficult to navigate but I haven't been on very many boards so have not much to compare it with.

I do hope this NAC helps. I really thought the coughing/phlegm was an allergy! AND I thought the shortness of breath was simply being over weight and out of shape.

I guess there is no way to know how quickly IPF progresses.

Blessings.-Sher

Re: New member

Sher, Trust me your not a pest. We all start with a lot of questions. I never go to the group site, I only post from here. If I think I miss something I will go to the web site. Several of us take NAC My Dr. told me it helps with the cough and phlegm. I'm sure you'll hear from others about it too. God Bless Peggyon 5/7/06 6:41 PM, Sher K Bauman at bofus@... wrote:

Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

[Guest guest]

Hey, Ginger: When do you know that it is time to take NAC?

Barb in KY

Babs, the transplant Dr. suggested it to me when I was eveluated. He said they had been having some good reports on it. So I ask my Pulmonary Dr. about it and he said he had just received a report that great things were happening with NAC. That it plays a beneficial role in prostate and respiratory conditions. His said, NAC has well established antimucolytic (anti-mucous) properties. So I started using it.

kiss kiss,

~Ginger~

[Guest guest]

Sher,

My pulmonary doc has me on Acetylcystiene 10% prescription that I use in a nebulizer. It thins mucus and brings it out in great quantities. I asked him on Wednesday about N-Acetylcystiene. He said that he didn't understand why you would take something by mouth, have it go through your entire system when you could nebulize it directly into your lungs. I also know that it is a good idea to get it through a pharmacy (even though it is not a prescription drug) because otherwise it is unregulated. There was a post a few weeks back about that.

It is amazing how our doctors all think differently. I don't argue with mine....he has kept me alive for nine years. Still ticking.

Hugs,

Joyce >> Sher, Several of us are on the med your Dr. put you on. It is available on line at a reasonable price. We call it NAC. What dosage did the Dr. recommend for you? Some are taking 3-----600mg tabs a day. First I've heard of a doctor recommending it. Keep us posted. Have you heard of neprinol? Look it up. The people that sell it like it a lot. Sold on the web. Grey> Re: New member> > > Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?> My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher> > > >

[Guest guest]

Hey, Ginger: When do you know that it is time to take NAC? Barb in KYTongueDancer2U@... wrote: Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg. I don't know about nepronil but will look it up. Thanks. GNC...the Nutrition store has it also for $12.95 I take 3-600mgs a day, too. kiss kiss, ~Ginger~

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Sher, I'm sorry you have to join us, but glad you are here. My daughters told me they couldn't talk to start with because there was too much information to swallow at one time.They were on massive overload. Now we can discuss plans and arrangements. Just give them a little time.Nobody wants to lose a parent ever. May God's Blessings be upon you and yours. Sher wrote: I'm having trouble getting around here. I'm posting to see if I'm doing it right.I was diagnosed with IPF about two weeks ago. Glad to find you.Sher

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

Hi P again I have good luck with this company www.puritan.com http://www.puritan.com/pages/file.asp?xs=D6D84C378B90495EB4C696AB16D1955D & PID=324 & CPID=39 & np=1Sher K Bauman wrote: Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg. I don't know about nepronil but will look it up. Thanks. Re: New member Sorry to keep being a pest.

Apparently one can post to the board through email or online. Is that correct or am I making things complicated again? My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Ginger,

I am sending this link that I ran across talking about the dangers of unregulated supplements. The FDA only regulates food additives and pharmecueticals. With out inspections in place the people who make these products could put anything in a capsule and sell it. I will try to find the post that said that N-Acetylcysteine could be purchased through a pharmacy.

Keep in mind that I am no expert.

Joyce

>> > > > because otherwise it is unregulated.> > > Sweet Joyce, > What does the term unregulated mean regarding NAC. I must have been > applying more lipstick for more kisses and missed that post.> kiss kiss, > ~Ginger~>

[Guest guest]

Ooops! Here is the link: http://www.fhma.com/herbal_products.htm There is much information online regarding herbal supplements and such.....but a lot of it is placed there trying to sell the product.

Joyce

>> > > > because otherwise it is unregulated.> > > Sweet Joyce, > What does the term unregulated mean regarding NAC. I must have been > applying more lipstick for more kisses and missed that post.> kiss kiss, > ~Ginger~>

[Guest guest]

I have to laugh every time I think of ordering NAC. I ordered from puritan also. (thanks P ) I ordered 5

bottles. buy 2 get 3 free, Well don't you know the box came with 10 YEP 10 leave it to me. I must have punched a wrong button. But it was only $43. and change. Think I'll be on it for a while. Good Luck Peggy

on 5/8/06 3:55 AM, at kpoooh9@... wrote:

Hi P again I have good luck with this company www.puritan.com

http://www.puritan.com/pages/file.asp?xs=D6D84C378B90495EB4C696AB16D1955D & PID=324 & CPID=39 & np=1 <http://www.puritan.com/pages/file.asp?xs=D6D84C378B90495EB4C696AB16D1955D & amp;PID=324 & amp;CPID=39 & amp;np=1>

Sher K Bauman wrote:

Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg.

I don't know about nepronil but will look it up.

Thanks.

Re: New member

Sorry to keep being a pest. Apparently one can post to the board through email or online. Is that correct or am I making things complicated again?

My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

...thanks for sharing about your girls. My oldest, Lysa, is handling it really well. At least in front of me. She is a very spiritual person and like myself, we dumped ourselves on God. We are so close. Joined at the hip close. She just turned 40 and I'm so proud of her maturity. We will just circle the wagons and keep on keepin' on!

My younger girl, is having a hard time. She still "acts" as though nothing is wrong. I understand she is in denial. It's a protection for her right now. My husband is surely an angel sent from God for these times we are in right now. He simply could not do more...emotionally or otherwise. I'm very lucky.

I've been given quite a gift, actually. Time. Time to do what needs to be done. Time to spend in a meaningful way w/family. Time to prioritize what I think/thought was important. Time to rededicate myself to God. Time to exercise my faith. Time to prepare. Time to still teach my children about the truths of life. These are the things I concentrate on. Thanks for giving me an outlet to share and realize, today, it's not too bad!

Re: New member

Sher, I'm sorry you have to join us, but glad you are here. My daughters told me they couldn't talk to start with because there was too much information to swallow at one time.They were on massive overload. Now we can discuss plans and arrangements. Just give them a little time.Nobody wants to lose a parent ever. May God's Blessings be upon you and yours.

Sher wrote:

I'm having trouble getting around here. I'm posting to see if I'm doing it right.I was diagnosed with IPF about two weeks ago. Glad to find you.Sher

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

I went to four GNC stores in our surrounding area. Don't carry it. Finally found it in an independent health food store. I'm glad to read all the posts on NAC. I will be more careful about where I purchase.-Sher

Re: New member

Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg.

I don't know about nepronil but will look it up.

Thanks.

GNC...the Nutrition store has it also for $12.95 I take 3-600mgs a day, too.

kiss kiss,

~Ginger~

[Guest guest]

Hi Peggy same thing happened to me. Ordered big bottles but they didn't have them so got twice the bottles in smaller size. Sure filled up all the shelfs HUG HUG PPeggy wrote: I have to laugh every time I think of ordering NAC. I ordered from puritan also. (thanks P ) I ordered 5bottles. buy 2 get 3 free, Well don't you know the box came with 10 YEP 10 leave it to me. I must have punched a wrong button. But it was only $43. and change. Think I'll be on it for a while. Good Luck Peggyon 5/8/06 3:55 AM, at kpoooh9@... wrote: Hi P again I have good luck with this company

www.puritan.com http://www.puritan.com/pages/file.asp?xs=D6D84C378B90495EB4C696AB16D1955D & PID=324 & CPID=39 & np=1 <http://www.puritan.com/pages/file.asp?xs=D6D84C378B90495EB4C696AB16D1955D & amp;PID=324 & amp;CPID=39 & amp;np=1> Sher K Bauman wrote: Where is it available online? I spent $18 for this first bottle. I too take 3, 600mg. I don't know about nepronil but will look it up. Thanks. Re: New member Sorry to keep being a pest. Apparently one can post to the board through email

or online. Is that correct or am I making things complicated again? My Dr. put me on n-acetyl-cysteine (sp?). As this is an amino acid, what does this do? Sher How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.