Biography

I am an almost 70 year old female, diagnosed with IPF on May 10, 2023.  My younger brother was diagnosed 15 years ago at age 54.  He died at age 62 after a lung transplant.  I have six living siblings and two biological children, none of whom have any idea yet that I have been diagnosed with IPF. I am so concerned about them, as now it looks like this is familial IPF.  I am doing everything I can to research what they need to do as soon as I tell them about my diagnosis.

I am a former marathon runner and triathlete.  After two very bad cycling accidents, I now limit my biking to the Peloton.  I use the Peloton at least five times a week for 60 minute classes and work out with free weights daily. I am finding the use of the finger oximeter very difficult.  By the time I get a reading, I am sometimes already down to 55.  Does anyone have a wrist type device they recommend that can be used while exercising?  I see there is a thumb type device that connects with apple devices, some wrote that it is not good if there is any movement.

Anyone that can shed light on the most recent genetic data that I can provide to my siblings and children, would be greatly appreciated.

Also, any athletes out there who can recommend an oximeter for use during exercise would also be appreciated.

I am in the very early stage of the disease.  However, recent reviews of chest x rays taken in 2018, indicate that the markings for this were already there.  Unfortunately, my doctor either did not think it was important enough to share with me, or missed it entirely.  Therefore, I do not know if I have had this already for five years, or if the recent findings are new.  We are attempting to get the 2018 films so my doctor can review them.

Any input or insights from anyone are welcome as I am in a bit of shock and feeling blindsided.

I will have a follow up HRCT scan on June 12 and my doctor has already told me he wants to put me on Ofev.  I am now researching that drug as we speak.

Thank you to each and every one of you for being there.  This forum is going to be a lifesaver for me.