Charlene-

I am 62 and was diagnosed with IPF in 2018. I understand the feelings you’re having. My PFT’s are severe however I have not been able to complete the test to satisfaction due to incessant cough.

I have been told there is nothing else that can be done for me. I’ve been told that I am not a candidate for lung transplants due to GERD. I…

Read more

Aloha- I am 62 and was diagnosed with IPF in 2018. I have tried both of these methods. Reducing taking OFEV to once a day and using infant liquid Imodium to control symptoms.Both methods have allowed me to travel with much less side effects.

Recently I did fly on an airplane for the first time since I began using O2. My lungs reacted poorly to…

Read more

Alex-

i was diagnosed with IPF in 2018. I began taking Ofev shortly after diagnosis. I had a Moh’s procedure for basal cell carcinoma on my scalp, 12/2020. I’ve had crazy nerve pain and other unexplained symptoms. The wound has been slow to heal and my scalp is still numb. I get terrible migraines as well.I had no idea that some of this may… Read more

I was diagnosed with IPF in 2018. I was put on prednisone, slow taper, for an acute exacerbation in early 2020. I’m now taking 10 mg per day. I’m 60 and have now been diagnosed with Osteoporosis. The prednisone did improve my breathing a small bit but I’m not convinced this was worth the trade off. If you are taking prednisone, be sure to see… Read more

I’m so sorry to hear others also have these painful muscle spasms! Thank you for sharing! Those back spasms sound terrible, they all sound terrible! My muscle  spasm feels like it could be related to my diaphragm but I’ve been told that’s not possible. I’m going to ask if what I’m feeling could possibly be nerve related, as was shared with me.… Read more

Thank you so much for this heartbreaking, groundbreaking and so important video! We need this on every news station! This message needs to reach everyone. So many people are still putting others at risk daily. I cannot believe the things my eyes see and my heart aches. I’ve had to put a sign on my front door so people will stop dropping by…

Read more

<p style=”text-align: left;”>Aloha-</p>
i am over two years post thoracotomy for diagnosis if IPF. I am still having extremely strong, painful spasms at the incision under my breast. Most times these spasms occur when I bend forward to tie my shoes  or pick up something off the floor. It is like a tight squeezing feeling that makes me clutch… Read more

John,

Thank you so very much for this excellent and useful video! This is exactly what I need right now and moving forward. You are fortunate to have found such a good resource so quickly. I also utilize the pulmonary wellness/boot camp by Noah Greenspan as Charlene suggested. Also a great resource. My pulmonary function class shut down due… Read more