[Pete Besio]

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.

[Pete Besio]

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 ” OK, it is time to start the meds”. But he was not overly aggressive with the suggestion.  I stayed in denial for a couple of months.  Oh…I should add that I don’t really have any symptoms.  My lifestyle is very active, I am fit as a fiddle….etc.  Not sure what inspired me to take my IPF more seriously, but I did.  Did a fair amount of research, talked to a number of clinics that were conducting clinical trials and became inspired to get after my treatment.  Much of my research has indicated that IPF effects everyone differently, including the rate of decline.  It occured to me that it wasn’t a good idea to wait until i was incapacitated in one form or another to start treatment, when that treatment was readily available.  So I started on Esbriet and enrolled in a clinical trial.

I too thought my disease wasn’t bad enough.  But…it is not going to get better.  If I was bleeding, would I put a bandaid on the cut to get it to stop? or would I wait for the blood to flow freely so I needed to go to the Emergency Room?  I decided to apply the band aid and do EVERYTHING I can to slow the progression of my IPF.

So that is my personal anecdote….can’t say I have any advice on how to get your family member to see the light.  There is a lot of support on these forums, we are all happy to do what we can to help.
Pete Besio

[Pete Besio]

@onlyjude

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 might be available for me to join.  My research into clinical trials led me to this site: https://www.clinicaltrials.gov/  .  This is a great resource, as it contains all clinical trials currently underway.  I searched for IPF trials that were enrolling new patients, found 10.  A clinic near me is participating in a trial.  I contacted them, based on the phone conversation they thought I was a good candidate, so I made an appointment.  The screening process for the trial includes a full suite of tests: spirometry, blood work, high res CT scan, 6 minute walk test.  Also included consultation with two pulmonolgists that reviewed my full medical records.  The study also will review my biopsy slides.  All this to determine if I am eligible to participate.  OH….and FREE!  An extremely detailed second opinion, and I highly recommend it.

Once I know the determination of my participation of my participation, it is my intent to schedule an evaluation at the University of Florida Medical Center, which appears to have a knowledgeable PF group.

Neither Esbriet nor OFEV sound like much fun to take, my plan is to be absolutely certain that I need to!

And lastly, if I have been diagnosed with a fatal disease, I don’t think there is such a thing as too many opinions.

Good Luck!

[Pete Besio]

@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

[Pete Besio]

@jross

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 applied to partake in a clinical trial and one of the requirements of the arm of the trial I am applying for is the patient can not be on other medications at the beginning of the trial.  Once I get on it, I can begin Esbriet.  As part of the evaluation for the clinical trial, i received consultation from an MD that was experienced with IPF.  He concurred with my pulmonologist on the diagnosis.

As part of my research, I became aware that the University of Florida, Gainesville has an Interstitial Lung Disease program.  Once I receive results regarding my admission/denial into the clinical trial I have applied for, I intend to schedule a consultation with them.  I was very interested to note this statement on their website:

“Most patients referred to our clinic carry the diagnosis of Idiopathic Pulmonary Fibrosis (IPF), a distinct disease in the category of interstitial lung diseases. As part of our evaluation, we reassess and revise prior diagnoses, and after the evaluation, about 20% of our patients carry the diagnosis of IPF. This distinction is very important, because different diseases have different outcomes and requires different therapies”.

I am not anxious to start taking Esbriet.  Pretty expensive drug in my view, and the side effects don’t sound like much fun.  My understanding is OFEV and Esbriet are the only drugs to treat IPF.  If i have to, I will take them.  But I want to make sure I have to.  Plus, a third opinion will be helpful.

Consider that I am a newbie, and take what I have to say with a grain of salt 🙂