1. < Lung Health
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Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

Interested in more discussions like this? Go to the Lung Health Support Group.

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staciecam | @staciecam | Mar 8, 2018
In reply to @llwortman "I can only send it to an email from my itunes...unless John or someone can guide..." + (show)
Profile picture for Linda @llwortman

I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda

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If able would you send that to me as well? I have severe asthma and this could really help with controlling my breathing.

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lainey513 | @Liebchen50 | Mar 8, 2018
In reply to @llwortman "I can only send it to an email from my itunes...unless John or someone can guide..." + (show)
Profile picture for Linda @llwortman

I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda

Jump to this post

I have an ipad and an itune app.. does that help?

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lainey513 | @Liebchen50 | Mar 8, 2018
In reply to @llwortman "I can only send it to an email from my itunes...unless John or someone can guide..." + (show)
Profile picture for Linda @llwortman

I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda

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Or if you just need my email i can give you that too.. sometimes they make things so difficult on this thing : )

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 8, 2018
In reply to @llwortman "I can only send it to an email from my itunes...unless John or someone can guide..." + (show)
Profile picture for Linda @llwortman

I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda

Jump to this post

Hi @staciecam @Liebchen50 and @llwortman We recommend not posting personal contact information such as email addresses on a public forum like Connect. We don't want you to get unwanted spam. A safer way to share personal contact information is to use the private message.

Here’s how to send a private message:
1. Click on the member’s name.
2. Click on Send Private Message.
3. Write your message.
4. Click Send message.

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Linda | @llwortman | Mar 8, 2018
In reply to @llwortman "I can only send it to an email from my itunes...unless John or someone can guide..." + (show)
Profile picture for Linda @llwortman

I can only send it to an email from my itunes...unless John or someone can guide
me on how to send it another way.
Always happy to share. It even helps me sleep if I wake up at 3:00am!
linda

Jump to this post

would need email to transfer from my computer to you;-)linda 

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Sophie | @sophie1019 | Mar 16, 2018

I have it. Was diagnosed in 2002..

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cognac | @cognac | Mar 16, 2018
In reply to @alexander "My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I..." + (show)
Profile picture for alexander @alexander

My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?

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Hello Spicegirl. Thanks for posting this. I'll be telling my dr. about it. I've been a member of this group for only about 6 months and it seems all of us are given different diagnoses, different treatments, and different prognoses. I find this very troubling. It's almost as if we are all guinea pigs. Thank you for letting me vent.

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oliver22 | @oliver22 | Apr 10, 2018
In reply to @francko "I have read in the group info about lung flare ups with pulmonary fibrosis. Being new..." + (show)
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I have read in the group info about lung flare ups with pulmonary fibrosis. Being new at this can some one tell me what happens and do you end up in the hospital. Thank You FRANCKO

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I have had ipf six yrs. I experienced two flare ups since. takes a week or so to recover with antibiotics I have been on Pirfenidone for four yes and it works with minimal side effects.recently I have experienced weight loss and poor appetite and sleep a lot. since I have exceeded the five yr.expectation from DX I wonder should I not be surprised?

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oliver22 | @oliver22 | Apr 10, 2018
In reply to @rosie82 "I am new too the group and am the caregiver for my husband. He is 84..." + (show)
Profile picture for Rosie82 @rosie82

I am new too the group and am the caregiver for my husband. He is 84 and was a farmer. Three yrs ago he was diagnosed with severe IPF and given the prognosis of 1-3 yrs. Last year he was hospitalized with bilateral pneumonia. He pulled through and is continnuing his battle. One of the mistifying experiences that he has often is dizziness. His doctors seem mistified with this problem.. I will be very interested to learn if anyone else suffers from he dizziness. My name is RoseMary

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sixteen yes ago I was DX hyper-sensitive pneumonitis cleared in two yr. then 8 yes later became I'll with ipf ,going on six now.

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bleo | @bleo | May 6, 2018
In reply to @penlee "Greetings! I am new to this site and I do have pulmonary fibrosis a more specific..." + (show)
Profile picture for penlee @penlee

Greetings! I am new to this site and I do have pulmonary fibrosis a more specific diagnosis maybe nonspecific interstitial pneumonia. Most other ILD have been ruled out. About five years ago I was told I had some lung fibrosis but it was not until this past March, 2017, that I began to pay attention & understand the specifics. Coughing and shortness of breath are my main symptoms. Recently I began taking Mycophenalate (CellCept) and a small amount of Prednisone. So far l'm doing okay and feel well though the cough continues. Has anyone had experience with forest fires and heavy smoke in the air? I live in Oregon where we have been surrounded by wild fires. At times I wore a 3M N95 mask. Thankfully we had some rain today!

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Hi penlee. Have been directed to you as I think we share the same diagnosis which is a pretty rare condition. How are you doing now? I hope you see my post too. I’m on the same medication as you too, although I just started on Cellcept a month ago. But don’t feel my condition is getting any better... doing my daily routine ie. showers and walks and brushing teeth is getting harder. 🙁

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