Pete Besio

Hey Mark,

This is a cool post. Pursed lip breathing was part of a pulminary rehab program I participated in.  I did find it helpful, but didn’t have the discipline to incorporate it into my daily life.  I was previously unfamiliar with the Buteyko Method, thanks to Charlene for posting that link.  Ever heard of the 3 6 5 method? I just read ab…[Read more]

Carol Libby,

I wasted about 2-3 months trying to qualify for assistance only to end up empty.  Same story as yours.  We aren’t rich, but I have recently retired, my wife is about to.  The $520 per month wasn’t part of our retirement plan!!

I am pretty sure that those that prescribe medications have no idea of the financial implications.  I cho…[Read more]

Steve,

I hear you on the fatigue and nausea.  Have you tried Ondansetron (Zofran) for the nausea?  It has helped me.  And there are ginger candies from “The Ginger People” that are pretty tasty and seem to help a bit.  I fight the fatigue factor too, but have learned to embrace the afternoon nap.

I agree with Michael about checking with you…[Read more]

Char,

So if i made your day a little better…that made my day a little better.

When I was younger, my lottery fantasy was…when I won…I was going to start a business.  My plan was to build that business with people that I met in my daily life that exhibited that attitude that we all want to be around.  You know, the server in the r…[Read more]

Hey Char,

I resolved very many years ago to stop watching any news network. Does wonders for your outlook on life.

I pay very close attention to the space industry.  The things they accomplish on a regular basis are awe inspiring and uplifting.  I do have the good fortune of living in FL, so I occasionally head over to Cape Canaveral to watch a…[Read more]

Hi Char,

Have you tried a phone app? I use one called Medisafe, but I am sure there are plenty of them.  The app allows me to enter my meds and sets schedule reminders.  Not sure if you can set different reminders for each med, but you might.

Take care,

Pete

Doug,

I feel your pain on the Esbriet expense, my copay is about half yours and it stings for sure.  Regarding the Galapegos study, the clinic that I am attending seems to feel that the study medication is having a positive effect on participants.  I am not an expert on placebos, but i think by definition a placebo should have no effect on you, e…[Read more]

Mark,

Let me address the most important thing first: Mal’s tolerance for beer!  I have been concerned about that since he first posted about it…not that I like my beer…..or maybe I do.

Second, I chose Espbriet over OFEV because I was more concerned about the GI effects that I have heard about with OFEV.  I am an avid bicycle rider, I ride 5…[Read more]

David,

As I was perusing the clinical trials website, I came across this and thought of you:
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Per an email exchange with my Galapagos Clinical Research Coordinator today:

The “arm” that I am participating in (NCT03733444) recently enrolled its 750th and final patient recently, so I will continue in the study until the 750th patient completes THEIR 52 weeks in the study. Galapagos intends to roll over participants into the open label…[Read more]

I just checked the enrollment criteria for the Galapagos study, on of the criteria:
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<li style=”box-sizing:…[Read more]

@abyron888

There are two arms to this study, UCSF is on the same arm that my clinic is on.  If your interested, there is another…[Read more]

Hi Jay,

I empathize with you, as I bet many members of the forums do.  The Google provides much information, but a lot of it needs filtering.  When I was diagnosed with IPF, I Googled it.  Life expectancy of 3-5 years was what I found.  YIKES.  I am about 6 months into my diagnosis and have spent significant time learning about IPF.  I have come…[Read more]

Jason…sorry to hear that it’s your mom. Interestingly, when I was originally diagnosed, my oldest daughter was really concerned, much like you are.  I downplayed the gravity of my situation to her, but I can tell she is much happier now that I have taken full responsibility.  Wish I had a magic bullet to help you.

Jason,

I am fairly new to the IPF “party”. It was pretty clear I had IPF around June 2019.  My pulmonologist discussed OFEV and Esbriet with me at the time, I wasn’t crazy about the potential side effects, so I opted out.  In June of 2020, my PFT results showed continue degradation of my lung function deteriated further, my Pulmonologist said ” O…[Read more]

Hi Jude,

I had my biopsy Nov 2019, this was the last procedure needed to classify the PF as Idiopathic, and the results supported an IPF diagnosis.  Love my pulmonologist and think he has done a great job diagnosing me.  His suggestion was that I consult with a University Medical center for further evaluation and to see if a clinical trial m…[Read more]

@jross

For what it’s worth, my lung biopsy experience was uneventful.  Two nights in the hospital, a little discomfort, but very manageble.  I remember feeling at the time that had I known what the experience would be like, I would not have put it off the six months that I did.

Pete

John,

I am a newbie too.  I have been diagnosed with IPF, and have had a lung biopsy.  The medical professionals I have consulted indicated to me that is the only way to ensure the “idiopathic” in IPF.  We looked for all other causes, none were found, hence I have IPF.  I have not yet begun my Esbriet treatment, but will soon.  I have appl…[Read more]