[Dave Sabatelli]

A CAT scan will show the level of fibrosis.

[Dave Sabatelli]

The results of my recent 6 min walk test indicated that I qualify for supplemental oxygen during exertion. I now have a OxyGo Next oxygen concentrator. I am very active so I’m trying to adapt portable oxygen in my daily life.  I also believe that I should try to keep my oxygen level as closes as possible to that of a normal person (94 -97).  Unfortunately I don’t know when my level drops (I believe I can feel < 80) but I would like to know sooner. I do have a finger pulse ox meter but it takes time. I think wearable technology is the answer. Has anyone found anything that works? I’m looking at the Apple series 6 watch but haven’t made a decision.  Also how many of you carry your portable oxygen in a backpack while working, like in the guarding, light construction work, walking etc?

Dave Sabatelli

[Dave Sabatelli]

I have IPF two weeks ago my Dr prescribed 2 20mg prednisone/day for 7 days. I believe the steroid burst help my daily activities  Dr says it can be repeated when necessary.  The steroid did increase my morning BG number but they returned to normal as soon as I stopped taking them.

 

dave

[Dave Sabatelli]

Thank you good interview, I am sharing with my family.  I am approaching my one year anniversary of being diagnosed with IPF  also one year on  Esbriet. I need to learn everything I can about IPF .

Thanks

Dave

[Dave Sabatelli]

Thanks Charlene for the research paper. I read some of it but I’m a “gear head” so I let my daughter Angie (medical technologist) read it.  Her reply “The section on page 12 states the results indicate that statins were able to attenuate established lung fibrosis in the mouse.  Attenuate means to lessen the amount or reduce”.  Looks like the research community is chipping away at this disease, I also sent this to my pulmonologist I’ll let you know if he replies.  I take Atorvastatin it clearly did not keep me from getting IPF but with Esbriet, Atorvastatin and caffeine (read the attached link) I hope to slow the progression of IPF.

“Caffeine inhibits TGFβ activation in epithelial cells, interrupts fibroblast responses to TGFβ, and reduces established fibrosis in precision-cut lung slices”. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893128/  

Thanks, Dave

[Dave Sabatelli]

Hi Charlene this is very interesting I take Atorvastatin, Esbriet how can I access the research paper I would like to share it with my PCP Dr and Pulmonary Dr.  Also I noticed the replies use PF and IPF was the research paper for both or just IPF? After reading this and other articles I see the need for my wife and I to attend the next conference. Dave

[Dave Sabatelli]

Just sent to Apple feedback  “I have IPF and knowing my blood oxygen level is very important me.Is this a feature Apple is considering for the Apple watch?”
Thanks

dave

 

[Dave Sabatelli]

Two days after my open lung biopsy May 13 2019 my Dr confirmed I have IPF. He said there were two drugs available to slow down the progression of this disease Esbriet and Ofev. He explained the side effects of both and recommended I take Esbriet. The main reason, I am very active and with Ofev you need to know where the bathrooms are located. It took about three weeks for my first prescription of Esbriet to arrive that was about seven months ago. The side effects of Esbriet I was most concerned about was sun sensitivity and nausea. I am happy to report no sun sensitivity and moderate nausea. I take protein drinks like Boost when I can’t eat a full meal and try to spread out the three doses equally throughout the day. My six month breathing test showed no decrease in lung function and that is good news.