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tetreaulta5

Pulmonary Fibrosis

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

Is there any one out there that has PF?

Tags: lung conditions

alexander

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?

jazz

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
Prednisone.

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terries

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
purplerod

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 http://www.biomediclabs.com. I'm thinking of giving their products a try. Have you heard of them?

nancyligon

Posted by @nancyligon, Jul 16, 2016

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.....

raincrowe

Posted by @raincrowe, Jul 25, 2016

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.

spicegirl

Posted by @spicegirl, Oct 6, 2016

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.

colleenyoung

Posted by @colleenyoung, Oct 6, 2016

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?

spicegirl

Posted by @spicegirl, Oct 6, 2016

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.

tula

Posted by @tula, 2 days ago

I'm interested in this info though it mY be older, I want to find answers and what works. LINDAWEST1942 aka @tula
Serrapeptase is what she used for IPF. A bit of research for me to do I hope. Bless you for sharing with others.

steve1948

Posted by @steve1948, 1 day ago

Hi Larry, I'm rally curious on what you said about your condition improved when you quit taking your statin, how did it improve?

steve1948

Posted by @steve1948, 1 day ago

Hi Tula (again) lol,
I have tried taking Serrapeptase and a high dosage of it. My Pulmonologist has never heard of it, but didn't discourage me from it. I tired it for two months but didn't see and improvement so I stopped. Not saying is doesn't work (guess I'm impatient) but for the cost with no scientific proof of success, well I'm somewhat skeptical. I do understand and use homeopathic ideas for other things (my sisters and daughter is totally sold on the homeopathic stuff). I know may daughter has come across with an essential oil that helps alleviate migraines with her daughter (11 yrs old now 13) and my sister says it works for her too. So I 'm not so closed minded on other things that can help people for conditions they/we suffer with. I guess I was at least expecting so little improvement on my breathing after using it (serrapeptase). I do hope you find something that helps you, and if it does please drop me a post.

tula

Posted by @tula, 1 day ago

Of course, I will keep positive or not so positive info I learn as we continue this journey to better info and better health Thanks for the info re:serrapeptase. Have a good day.@tula

steve1948

Posted by @steve1948, 14 hours ago

Hi spicegirl, I tried serrapetase for two months and didn't feel any different, (maybe expecting to much to soon, I don't know). IF you CT showed the fibrosis was gone did you feel an increase in your lung capacity for breathing again? How long was your period of taking the enzyme?

richardlande

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.

nancymiller2000aolcom

Posted by @nancymiller2000aolcom, Dec 14, 2012

are u spitting up any blood?

purplerod

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.

nancyligon

Posted by @nancyligon, Jul 19, 2016

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.

steve1948

Posted by @steve1948, 14 hours ago

Sorry to hear of your diagnosis, I had a tough time carrying around an oxygen bottle where ever I went, but you get use to it (and usually glad you did). I still play golf, judo's for your softball cause it calls for running which I miss very much. I do rigorous weight training WITH my oxygen bottle with me and it helps me recover quicker. If I get to winded I start coughing like there is no tomorrow (a well brand name cough suppressant helps sooth my throat and the coughing and on the wrappers it has little quips that motivate me to push harder). I watched the video of lung transplant from Mayo and it was interesting, but not necessarily for everybody I found out. I'm 68 and won't let "it" define me either. Keep on keeping on and stay positive.

shann2002livecom

Posted by @shann2002livecom, Jan 24, 2013

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

steve1948

Posted by @steve1948, 16 hours ago

Hi Shann, I have IPF, I use a Cpap machine with oxygen infused and I sleep rather well. Still cough sometimes at night but at least I get the rest I need. Perhaps they could do a sleep study on you.

colleenyoung

Posted by @colleenyoung, 12 hours ago

Hey Shann and Steve,
Did you know that there is a new Sleep Health group on Connect. You may interested in checking out the discussions there. Steve, I bet you'd have some relevant and useful contributions to make to the CPAP discussions. See the Sleep Health group here https://connect.mayoclinic.org/group/sleep-health/

powderpuf

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.

pamelafrye1

Posted by @pamelafrye1, Mar 8, 2016

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.

mairi

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.

steve1948

Posted by @steve1948, 15 hours ago

What is the reason for possibly changing his medication? I have been on Esbriet for over a year now and am curious, what I have read about nintedanib side effects seems to be extreme compared to perfidenone.

rebeccamcroberts

Posted by @rebeccamcroberts, Mar 8, 2016

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?

pd02

Posted by @pd02, May 20, 2016

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.

powderpuf

Posted by @powderpuf, May 20, 2016

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

pd02

Posted by @pd02, May 21, 2016

steve1948

Posted by @steve1948, 15 hours ago

I am in Florida for the winter and a lung institute is just in the next city over. I called them and they explained they do two types of stem cell treatments. One is using the stem cells from the blood and the other is from the bone marrow. Price was around $6000 for blood and &12,000 for the bone. No guarantees on it, except they'll take your money for sure. I have IPF and am looking for that cure all too, however, if it's to good to be true.............At this juncture I am hesitant to embark on this journey as my Pulmonologist (Cleveland Clinic) is a skeptic because of the lack of research out there. That's what I have found out from talking with the lung institute. It's a tough decision.

inspiration

Posted by @inspiration, May 21, 2016

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

aliskahan

Posted by @aliskahan, May 21, 2016

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?

muskiemama

Posted by @muskiemama, Jul 8, 2016

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

raincrowe

Posted by @raincrowe, Jul 26, 2016

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.

oliver22

Posted by @oliver22, Nov 9, 2016

Hello. I was diagnosed ipf 5 yrs ago. when Esbriet became available, in Mar 2015. started 270mg tabs 9 a day received immediate results and breathk tests show improvement from last yr and recently. I use 5 liters pulse O2 full time 24-7 Esbriet has worked well for me Also, I should say, that 16 yrs ago I was diagnosed idiopathic hypersensitive pneumoñitis at Mayo Clinic Scottsdale I believe the ipf evolved from this 10 yrs later and also associated with acid reflux.

hironopiro

Posted by @hironopiro, Nov 12, 2016

Welcome to Connect, @oliver22.
Thank you for sharing your experience on Esbriet. A lot of people seem to agree that the concept of IPF evolved over the last 10 years. You briefly mentioned about acid reflux, would you be able share your experience on acid reflux medications with others too?

oliver22

Posted by @oliver22, Nov 16, 2016

hi, i have been on Esbriet 18 months. very pleased with results i also use O2 24-7 some side effects but do-able,recently reduced to 6 caps aday 270mg.breathing test have improved! go for it

hishamhussain

Posted by @hishamhussain, Sat, Jan 14 at 7:14am CST

dear @inspiration
what is the relation between acid reflux pills which you used and IPF?
do you have gatsrIicproblems causing IPF?

hishamhussain

Posted by @hishamhussain, Tue, Jan 17 at 6:08am CST

@inpiration
Could you please tel me why you use acid reflex pills?
do you have GERD or Digestive problems?
and what the relation between PF and acid reflex pills?

steve1948

Posted by @steve1948, 14 hours ago

My doctor and I were trying to figure out why I cough so often and violently with my IPF. The acid reflux avenue was a shot in the dark hoping "it" was the cause of my coughing. Nah, that was a bust. I didn't know that a person "could have acid reflux and not know it though. On to more trial and error on my coughing, hopefully we'll run across something that helps.

hlweber1

Posted by @hlweber1, Jun 7, 2016

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.

Thanks!
-Heather

muskiemama

Posted by @muskiemama, Jun 7, 2016

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.

colleenyoung

Posted by @colleenyoung, Jun 8, 2016

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 https://connect.mayoclinic.org/discussion/a-interstitial-lung-disease-and-lung-transplant-what-patients-need-to-know/ 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
muskiemama

Posted by @muskiemama, Jun 8, 2016

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.

colleenyoung

Posted by @colleenyoung, Jul 6, 2016

@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: https://connect.mayoclinic.org/discussion/on-facebook-live-patient-surgeon-chat-15-years-post-lung-transplant/ Feel free to post your questions before the chat so Richard and Dr. Keller can consider them before the chat.

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muskiemama

Posted by @muskiemama, Jul 6, 2016

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.

colleenyoung

Posted by @colleenyoung, Jul 6, 2016

@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! https://connect.mayoclinic.org/group/transplants/

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muskiemama

Posted by @muskiemama, Jul 6, 2016

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.

rosemarya

Posted by @rosemarya, Jul 6, 2016

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)

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muskiemama

Posted by @muskiemama, Jul 8, 2016

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?

colleenyoung

Posted by @colleenyoung, Jul 8, 2016

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
muskiemama

Posted by @muskiemama, Jul 8, 2016

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!

colleenyoung

Posted by @colleenyoung, Jul 8, 2016

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
loisblo

Posted by @loisblo, Fri, Jan 13 at 9:43am CST

I have IPF.

oliver22

Posted by @oliver22, Fri, Jan 13 at 10:23am CST

how long since your diagnosis? i have going on five yrs. i posted nov. 2016 some detail

loisblo

Posted by @loisblo, Fri, Jan 13 at 12:03pm CST

I first was diagnosed with pulmonary hypertension and in trying to find out what was causing that, they found it was IPF, So about 4 years since the beginning. Are you on oxygen yet?

colleenyoung

Posted by @colleenyoung, Fri, Jan 13 at 1:03pm CST

Hi @oliver22, thanks for welcoming new member @loisblo.
Let me introduce you to a few other Connect member who have been talking about pulmonary fibrosis @nancyligon @pd02 @powderpuf @inspiration @muskiemama @chicoco @jvivian @mairi.

Are you on oxygen?

oliver22

Posted by @oliver22, Sat, Jan 14 at 11:32pm CST

yes 24-7 5 ltrs pulse setting for 3 yrs

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