[donita-romero]

My father was a body builder for over 50 years.  Exceptional shape.  Went to the gym 5 days a week even at the age of 79.  But late in 2018 he began experiencing shortness of breath that accelerated pretty quickly.  His rheumatologist had no idea why and his cardiologist thought it was his Afib.  They scheduled a surgery for his Afib in January 2019.  Unfortunately he never made it.  This started in October and by December 20th (Thursday) he was instructed to check himself into the hospital in order to see a pulmonologist due to the holidays.  On Saturday night I received a call that he had collapsed was rushed to the ICU and was intubated which he remained on for two weeks.  They finally told me on Christmas Eve that he had very advanced IPF (which he never knew about).  And that he wouldn’t leave the hospital alive.  I decide not to tell my brother until after Christmas to let him enjoy the holiday.  We had to remove him from the ventilator and the hospital staff made him comfortable with morphine and something to help with the feeling of breathlessness.  He eventually fell asleep or into a sort of coma and later that night passed.  I was tested a few months later only to find out I too have IPF.  Took me a minute to get the picture of his passing out of my mind and thinking about my own end of life journey.  But I have to enjoy my family as long as I can and have to stay positive.  I have hope they ill find something for us.  Unfortunately the drugs they have do nothing for autoimmune IPF so I have to keep hoping for a breakthrough.

[donita-romero]

Hi Christie, thank you for your response.  Yes it does suck but I keep a good attitude.   I don’t know for certain if my fathers was autoimmune but doctors suspect that it was.  I am working with UCSF and they did a lung biopsy on me to confirm their suspicions and the pattern was consistent with autoimmune IPF.  I have not done any genetic testing in regards to IPF but after being diagnosed with Lupus I joined a study at UCSF where they took mouth swabs from my family members to study links due to my fathers Rheumatoid Arthritis.  I wasn’t aware of genetic testing for IPF.  Let me know if you have further questions.  Happy to answer them.