[Colleen]

I have IPF, going on 5 years.  In Dec, 2019 I was diagnosed with bladder cancer and prior to surgery, they did an echo to make sure that I could survive the surgery.  I refused to allow them to put me under as my current lung function at the time was 42% and so we opted to remove the tumors with a spinal.  During the echo it was determined that my heart was struggling.  Mind you I was only on o2 for exertion and sleep.  After adding another “gist” to my collection (cardiologist) and after a right heart cath, it was determined that the right side of my heart was struggling to pump the blood back to my lungs, so I was put on Sildenafil.  So there are BP markings for your heart different.  Earlier this year after another heart cath it was determined that my heart was still struggling and my lung function is now at 39%.  Because of my IPF I now have PAH.  My cardiologist suggested I go on Tyvaso, which is inhaled and I was hesitant because I didn’t want to inhale anything into my already screwed up lungs.  He agreed to wait for me to talk to my pulm doc.  My pulm doc is really involved in the PFF and said we should give it a try.  I’ve been on Tyvaso (another really really really expensive drug) for almost 3 months.   Tyvaso is taken 4 times a day and you work yourself up to 9 breaths each time.  I’m at 8 as I get some of the headache side effects.  I go to see my pulm doc the end of July, so I’ll be interested to see if it’s helped as they say that people with PAH and IPF could benefit from it.  Stay tuned!