Share this:

Pulmonary Fibrosis

Posted by @tetreaulta5 in Lung Health, Feb 25, 2012

Is there any one out there that has PF?

Tags: lung conditions


Posted by @alexander, Mar 6, 2012

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?


Posted by @jazz, Apr 22, 2012

Larry my name is Lyn.I am from Australia and I have Pulmonary Fibrosis caused by Rheum,Arthritis and I am trying to contact someone with same type of PF.So far my worst symptom is Chronic Cough & some breathlessness.Wrst time for me has been March 2012 when I had a chest infection--Roxar 3 Antibiotic helped.
It sounds as though your condition has been caused by medication;My Respiritary Spec. has told me that as disease progresses I will have to go on large doses of

jvivian and jganda04 like this

Posted by @terries, Jul 15, 2012

My husband 61, was diagnosed with IPF in November of 2011, he is deteriorating very quickly, a set of lungs is his only hope. We have been turned down my Tampa General and Jackson Miami Hospital. He has to be an "otherwise Healthy being" the first dr we had did nothing, and now I find the issues he has are related to the IPF and disqualify him for lungs. I am desperate, I want him to live.....on and off of steroids and xanax, spent a week in hospital three weeks ago for respiratory failure. Anything anyone knows of to help, please send me info....

maryshine likes this

Posted by @purplerod, Dec 6, 2012

Sorry to hear about you husband. I have been diagnosed with IPF my self and don't really know what to expect. A friend gave me a website I'm thinking of giving their products a try. Have you heard of them?


Posted by @nancyligon, Sat, Jul 16 at 10:52am CDT

Hi Terries. You mentioned your husband was DX 2011. What treatment has he been on. I was DX in 14 and on Ofev(1 year) 02 24/7 2lts and swim 3 days a week... It's important to ex cerise and get the 02 his body needs. How are you? Hang in caregiver he needs a strong you too.....


Posted by @raincrowe, Mon, Jul 25 at 10:09am CDT

I am taking Perfinidone 6 capsules daily through a research study since 5-25-2016 and it is supposed to slow the progression. It does almost eliminate my cough but it has side effects that can effect some but not all. The biggest one is fatigue.


Posted by @spicegirl, Thu, Oct 6 at 3:36pm CDT

I just found this very old thread, so I hope someone will still read it.

In 2011, an X-ray after a minor car accident showed I had pulmonary fibrosis. The doctor prescribed Serratide but no other medications.
Having read a lot about it, I decided to try serrapeptase - this is an enzyme that dissolves fibrin. I continued to take it, and after a CT scan last week, today my doctor told me I have no sign of lung fibrosis.

I do have emphysema, so I still have problems, but I was amazed that the fibrosis had gone. Sadly, the doctor showed absolutely no interest in how I achieved this, given that it is supposed to be incurable.


Posted by @colleenyoung, Thu, Oct 6 at 9:42pm CDT

Welcome to Connect @spicegirl. While this thread was started in 2011, members have been contributing to it more recently as well. If you keep reading you'll meet @nancyligon @pd02 @powderpuf @inspiration @muskiemama and others talking about pulmonary fibrosis.

Is it possible that you were incorrectly diagnosed with PF?


Posted by @spicegirl, Thu, Oct 6 at 10:19pm CDT

Colleen, I would have to dig out the X-rays and get a second opinion.It was not idiopathic fibrosis, it was probably caused by smoking, if that makes any difference.

I saw a different doctor a couple of years ago who sent me for the first chest X-ray since the accident. He told me the PF had not advanced, which means it was there, but had not progressed. So no, I doubt there was an incorrect diagnosis.


Posted by @richardlande, Aug 5, 2012

hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.


Posted by @nancymiller2000aolcom, Dec 14, 2012

are u spitting up any blood?


Posted by @purplerod, Dec 17, 2012

I found out that I have PF about 2months ago. Had alot of test and blood work . The Dr. I have wants me on oxygen 24hrs a day but I have been fighting that. Now it looks like I will be giving in to the use of oxygen. Don't like the idea of there not being a cure other than lung transplant. I try to stay active by golfing softball and yard work, but sometimes its a alot of work where it didn't used to be that way. I will not sit home and be a veggie. I am 66 yrs old.Don't have a mayo clinic near me.


Posted by @nancyligon, Tue, Jul 19 at 7:31am CDT

Hello. Yes our lives have changed but we know our devil so to speak.... I understand the resistance to 02 but have decided to feel better than worse. I don't get to mow my grass but I can sit and pull reeds ( very therapeutic) are you on Ofev? Remember the musical Godspell. Day by day Memorize those words my IPF friend.


Posted by @shann2002livecom, Jan 24, 2013

want to find a place that has reserce for pulmonary fibrosis.And I can't sleep at night.


Posted by @powderpuf, Aug 28, 2015

Good Morning! I have been diagnosed with Pulmonary Fibrosis and dealing with this is really wearing me out. Not getting any better and worried about the outcome.

Edited: 02/03/2016 @ 8:48pm


Posted by @pamelafrye1, Tue, Mar 8 at 1:49pm CDT

I too have been told that I have this, recently feel from dizziness and broke my foot. I need another surgery and I to have had my breathing to worsen . I am having real bad heart palpitations.


Posted by @mairi, Sep 10, 2015

My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.


Posted by @rebeccamcroberts, Tue, Mar 8 at 2:24pm CDT

Hi @pamelafrye1, welcome to Connect! I'm one of the community moderators here. We moved your post to this existing thread to connect you with people like @mairi, @powderpuf and @purplerod. They've all shared a little about their own experiences above.

@pamelafrye1 when were you diagnosed with Pulmonary Fibrosis (PF)? Do any of the treatment options seem to be helping?


Posted by @pd02, Fri, May 20 at 4:31am CDT

Hi. About one month today, simply by examining the chest x-ray, my doctor told me that I had interstitial pulmonary fibrosis.I wonder if stem cells will soon work miracles. I have been searching the net for whatever new research has been done in this area and would certainly like to know more about this.


Posted by @powderpuf, Fri, May 20 at 6:27am CDT

I would appreciate any information that you may find, I have not had good results with finding information.


Posted by @pd02, Sat, May 21 at 5:50am CDT


Posted by @inspiration, Sat, May 21 at 1:07pm CDT

I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don't seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013


Posted by @aliskahan, Sat, May 21 at 2:50pm CDT

Hi @inspiration, I moved your post to this ongoing discussion about pulmonary fibrosis where you can connect with other members, including @powderpuf @jvivian and @pd02. What makes you reluctant about Esbriet? Have you asked your doctor about other options?


Posted by @muskiemama, Fri, Jul 8 at 2:33pm CDT

My husband tolerated Esbriet very well, minimal side effects. Continued progression of IPF but it may have gone much quicker without Esbriet?


Posted by @raincrowe, Tue, Jul 26 at 12:07pm CDT

WOW !! IPF for 16 years. I am interested in knowing what are the acid reflux pills that you take. I take Perfinidone through a research program reluctantly but that is about the only med available.


Posted by @hlweber1, Tue, Jun 7 at 6:23pm CDT

Hello all! I'm new here because my father is awaiting a lung transplant due to IPF. We have the familiar version as my dad is the third generation to be diagnosed. I'm interested in participating in any conversations regarding IPF and lung transplants.



Posted by @muskiemama, Tue, Jun 7 at 6:47pm CDT

My husband was diagnosed with IPF about four years ago. Was listed for a lung transplant in December 2014 and is currently inpatient at Mayo Rochester.


Posted by @colleenyoung, Wed, Jun 8 at 2:10pm CDT

Welcome @hlweber1 and @muskiemama, I'm glad that you have connected with others who have IPF here on Connect.

As you both have family members awaiting lung transplant, I also wanted to make you aware of the recorded webinar we have about "Interstitial Lung Disease and Lung Transplant: What Patients Need to Know" You can watch it here In the webinar, Mayo Clinic doctors Cassie Kennedy, M.D., Transplant Pulmonologist, and Teng Moua, M.D., Interstitial Lung Disease Clinic Director, discuss interstitial lung disease symptoms, diagnosis, and treatment options, including lung transplantation.

I'm also bringing @nancyligon and @kerchap into this discussion thread.

Heather - do you also have IPF? How concerned are you that you may have inherited it?
Muskiemamma - how is you husband doing? How are you?

Ali Skahan likes this

Posted by @muskiemama, Wed, Jun 8 at 3:26pm CDT

Yes, I've viewed the webinar, love Dr. Kennedy - she's on service this week. My husband is doing very well, stable and comfortable on opti-flow oxygen. Great staff on Mary Brigh 6F! I'm doing well also, we're patiently waiting for a donor gifting his miracle of more life.


Posted by @colleenyoung, Wed, Jul 6 at 11:54am CDT

@inspiration @hlweber1 @muskiemama @pd02 @powderpuf and everyone else sharing in the discussion about IPF. I thought you might be interested in joining us for a live video chat with a patient & his doctor 15 years after his lung transplant.

See more information here: Feel free to post your questions before the chat so Richard and Dr. Keller can consider them before the chat.

Ali Skahan likes this

Posted by @muskiemama, Wed, Jul 6 at 12:14pm CDT

Thanks Colleen! We're striving for 15 years too ... my husband recieved a bilateral lung transplant yesterday, July 5. So thankful for the medical teams at Mayo and our hero, his donor.


Posted by @colleenyoung, Wed, Jul 6 at 12:31pm CDT

@muskiemama oh my goodness. Your message just gave me goosebumps. I can't believe the timing. He had the transplant only yesterday? I'm so happy for you and your husband. So begins day 1 of your next 15, 20, 25+ years. Thank you for telling me.

Please join me, @rosemarya and others in the Transplant group and share your story!


Posted by @muskiemama, Wed, Jul 6 at 12:55pm CDT

Yes, just yesterday - the greatest gift of all, a second chance. Overwhelmed today with thoughts of his donor/family and so deeply grateful. Hubby is doing well.


Posted by @rosemarya, Wed, Jul 6 at 1:06pm CDT

Beautiful news!!! This is wonderful!! I'm happy for both you and your husband. I can feel the happiness, joy, and relief myself as I recall that special moment myself. I am glad your husband is doing well. And now maybe you can get a good night's rest!! Our organ donors are the real heroes in today's world. God bless them and their families for giving life. Thank you for sharing this glorious news!!
Rosemary (liver/kidney 2009)

Ali Skahan likes this

Posted by @muskiemama, Fri, Jul 8 at 12:38pm CDT

Colleen, I had registered for the chat but then missed it due to being with my husband as he took his first walk - he lapped the ICU :-). Will this be archived?


Posted by @colleenyoung, Fri, Jul 8 at 12:48pm CDT

You didn't miss it @muskiemama. The video Q&A is on July 22 (and it will be archived for viewing later). Good that you registered for it. You'll get a reminder 1 day and 1 hour before the chat goes live.

Congrats on the first walk about the ICU! What a champ. When does he get his room upgrade out of ICU?

Ali Skahan likes this

Posted by @muskiemama, Fri, Jul 8 at 1:45pm CDT

Oh my gosh, somehow I thought it was today! He just got kicked out of the ICU, bed needed for a sicker patient :-). Life is good indeed!

Rosemary, Mentor likes this

Posted by @colleenyoung, Fri, Jul 8 at 2:20pm CDT

I'm not surprised you got muddled with the date. You've got a lot of things going on. It's just so exciting that they are all such good things today. Happy moving day.

Ali Skahan likes this

Please login or become a member to post a comment.