[George Manolakis]

My biggest regret was not starting either Esbriet or Ofev when I was first diagnosed. I read so much about side effects that I told myself the side effects outweigh the benefits. Boy was I wrong.
5 years after diagnosis I started taking Esbriet with zero side effects so I would strongly recommend starting drugs ASAP and ,if side effects occur, deal with that. I am in my 6th year at 87.
I learned so much from this forums and am deeply grateful for those maintaining this site.
Somehow I found the Heartwell Foundation as a group that helps with partial payment of medications. They give grants for one year at a time for qualifying diseases. Since I am in my first year, I do not know the process of renewal in future years.
Hopes this helps someone.

[George Manolakis]

Random thoughts having lived with IPF for 5 years.

Background. I was diagnosed with IPF in 2017 at age 83 with relatively stable PFT,s and CT scans thru mid 2021. Started rehab September 2021 going from the attitude of how can I increase resistance level of each exercise until in January 2022 where I cannot do 1 mph on treadmill for 2 1/2 minutes. In my home, I cannot walk 40′ without considerable SOB. Last CT scan in December showed substantial progression of fibrosis from 1 year earlier.

Weight loss. Over last 2 months, lost 12 pound (175-163) at 5’8″. Decrease in appetite.

Ofev/Esbriet. I was very hesitant to take these drugs due to fear of side effects and the requirement to take multiple pills multiple times a day and I would have resisted my pulmonologist’s advise to begin this regimen partly because of lack of progression over the early years of IPF. I am not a happy pill taker altho I take some pills every morning and others every night with some missed days. Today, I realize too late here is no “do over” when dealing with an incurable disease. If you have IPF, my recommendation in hindsight is to start on drug therapy early. Can only help your longevity.

Progression of IPF. When it starts going downhill, it can go fast, at least in my experience (2 months). Now on Esbriet and Oxygen.

Cannula. When wearing the cannula over the ears, there is a constant tug of the tube on the ears. I started clipping a 1/4″ binder clip to my shirt to support the cannula without the tugging. That size clip very slightly squeezes to tube so it requires a minimal effort to adjust the length. I use it at night also. More comfortable sleep.

Lung transplant. Your lungs are only going to get worse in time. If you would ever consider a lung transplant, start early on. Age is a factor as are other medical conditions which could emerge as you age. Many transplant centers have age restrictions. Two that I am aware do not, on the East Coast, are Duke University in Durham, NC and Mayo Clinic in Jacksonville, FL. They at least considered an 87 year old.

I hope this helps someone.

George Manolakis

[George Manolakis]

Charlene,

Thank you for hosting this site. You do a great job and thousands appreciate your effort. I am a constant reader but seldom contributor. I was researching steroid inhalers and came across this thread that I read from beginning to end.

To recap my history, I turn 87 in several days, diagnosed with IPF start of 2017, still have good PFT’s, not on oxygen so all good signs. This year I regressed significantly in terms of stamina from doing everything I wanted to sometimes barely able to walk from bedroom to living room without complete exhaustion. This morning couldn’t even brush my teeth without having to sit down. I empathise with those with far greater symptoms from IPF than I.

Thus my interest in inhalers. I was prescribed ProAir HFR, an albuterol sulfate, which I only use to suppress severe coughing spells which occur infrequently. It does nothing for SOB, thus my interest in steroid inhalers.

My question is to learn if these type inhalers offer relief for severe but temporary SOB and specific brands. I look forward any responses.

Have a great day, George Manolakis

[George Manolakis]

My thoughts are with you at this time. We are all family under the veil of this disease.

George Manolakis

[George Manolakis]

Mark,

Thank you for an excellent interview. For the first time I have a logical explanation of how IPF develops. It took slightly more than a year to diagnose the cause for shortness of breath by my cardiologist and PCP altho I was diagnosed with AFIB and had ablation during that period. Fortunately, my scarring appears more in the center of the lungs and has not had much, if any, progression over the 2 years since diagnosis. My PFTs are good. I would be open to being included in a clinical study if being a active 85 is not a disqualifier.

[George Manolakis]

I was prescribed Esbriet in September and it took until December to get approved. I believe two factors caused the problem. I wanted Ofev because of less pills and 2X per day instead of 3X per day taking pills. My carrier preferred Esbriet as the starting drug for whatever reason. Second was the problem understanding the requirements of the insurance provider. My doctors nurse was pursuing the prescription thru Walgreens  (my drug store of choice) or Tricare (Military retiree). My carrier (United Healthcare) deals with CVS Specialty Pharmacy only so it took several weeks to get to this understanding. Once these two issues were understood and resolved, the approval was fairly swift.

I happen to have good insurance but still lacked 100% no cost. Healthwell Foundation grant that covered the shortfall. Pulmonary Fibrosis is one of their covered diseases.