Pulmonary Fibrosis*

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?

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 -- https://www.youtube.com/watch?v=-OnvsPoYvVw

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

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?

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

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.

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?