Mayo Clinic Connect
Is there any one out there that has PF?
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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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
Liked by jganda04, jvivian, wba3721
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….
Liked by maryshine, wba3721
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?
Liked by wba3721
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.
are u spitting up any blood?
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.
want to find a place that has reserce for pulmonary fibrosis.And I can’t sleep at night.
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.
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.
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.
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?
Liked by Linda, Volunteer Mentor, wba3721
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.
I would appreciate any information that you may find, I have not had good results with finding information.
@powderpuf : try this video —
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