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?
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.
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.
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?
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 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
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.
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.
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?
@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.
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.
I have IPF.
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?