John Weitner

No..I never ran anything I was taking with the pulmonologist.. They should have provided information about other useful things to take other than Ofev.  Doctors tend to push pharma meds and dismiss natural remedies.

I did a 3 month trial of the Wei products shortly after I was diagnosed last August. For me it is impossible to say one way or the other if they had any benefit.  In addition to OFEV,  and medication for acid reflux, I was taking quite an assortment of other vitamins and supplements prescribed by my Naturopath. As well I started using a t…[Read more]

Mark, I’m happy to hear that you came through this without any damage to your body.

I’m very nervous about getting Covid. I spoke with my lung doctor a few weeks ago about Covid with those with IPF. He stated that my odds of dying doubled if I did get it,  compared to another 67 year old with no underlying conditions.

I’ll be first in line to…[Read more]

Hi Dawn..

Yes I do use some weights for the arms as well as strengthening my legs in the Yoga exercises.. So sorry to hear about your family..this sure suggests PF is hereditary.

Hi Susan..

I use this one:

CAIRE® Hi Flow Stroller®
CAIRE’s Hi Flow Stroller offers continuous flow up to 15 LPM and is the perfect option for hospitals, long-term care facilities and ambulating oxygen users that require high flow rates. The CAIRE Hi Flow Stroller is housed in an attractive leather-finish soft case that is both attractive, dur…[Read more]

My POC goes up to 15! and the O2 is gushing out. I’ll up the flow rate when exercising and see if I can raise my O2 level.

Hi Suzanne

I do have supplemental O2 which I use while on the treadmill.. I have it set to output 3L/min and I still will drop to 77.. should I increase the flow rate ? or should I slow the treadmill speed down so the O2 level stays higher?

Thanks for sharing this Mark – It is really assuring as I was concerned about long term use – especially on the liver.

I have only been on Ofev for 3 weeks so cant answer your question. So far, I only had diarrhea once, and as long as I eat a decent amount of food, I am tolerating it very well.

Hi Charlene..

thanks for the suggestion about a lung rehab program – there is a place not to far away that does offer personalized exercise programs – I will contact them.

This is the video I use for breathing and stretching – it was put together by the Irish Lung Fibrosis…[Read more]

Hello Reshma,

I use a wedge pillow and it really helps. Around $40 Amazon..

I want to ask the group what causes the coughing?  My doctor says it is from Acid Reflux. He gave me a med for it and I changed my diet and my coughing has dropped dramatically.  I’m guessing that acid reflux is not the only thing that triggers the coughing ?…[Read more]