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Good AM
Marj regarding the heart all lung diseases CAN BE associated with right sided heart disease. The right side of heart pushes blood to the lungs. A Cardiologist with use of an echocardiogram can determine if there is pulmonary hypertension (elevated blood pressure) in the vessels leading to the heart. I recently had a few bouts of Atrial Fibrillation possibly from this although it runs in my family.
the FEV is what is followed on the PFTs and studies so if those values are stable I tend to agree another HDCT will not add much. Another important parameter is the DLCO which measures diffusion of gasses in the lung. When that number drops it explains why lung patients get so easily winded.
As for the OPEN lung biopsy the diagnosis of IPF is fairly iron clad to my knowledge assuming it was made by a reputable pathologist. A diagnosis of IPF without this biopsy could be questionable. My pulmonologist encouraged me to see my Cardiologist to make sure I have no right-sided cardiac issues such as pulmonary hypertension etc. An FEV that is 80% of normal is fantastic but how is his O2 saturation?
Marj I spoke to my pulmonologist yesterday and asked him about exhaustion/fatigue. He couldn’t tell me if it’s the IPF vs the OFEV vs both. I was never sick a day in my life but about a year before my diagnosis I started to feel (mostly every day) by noon a sense of exhaustion, brain fog, palpitations, aches everywhere and loss of appetite and zest for life. I saw 40+ patients a day for 33 years. Never ever called in sick. All of a sudden I’m cancelling 20 patients a day and sometimes surgeries. Thought i was a head case. No lung symptoms etc. Then all of a sudden i thought i was having an asthmatic attack (never smoked; no lung history). My point here is even as a physician I was clueless for 4-6 months that this stemmed from a lung problem.
I freaked reading about the 3-5 year life expectancy. That’s antiquated based on the days without anti-fibrotic meds (OFEV and Esbriet). And G-d willing new meds on the horizon. I’m excited about stem cells. My pulmonologist told me over and over these meds are game changers and lung transplant options ha e improved greatly. OFEV was in Japan i think 5-7 years before it was finally approved by our loving FDA (DONT get me started)!!
Carlo thank you for your info. I’d like to look into the Inspirometer. A company did call me back. I also am interested in the Air Physio unit to reduce mucous in lungs. My throat mucous/hoarseness as per my pulmonologist is more likely related to CPAP/post-Nasal drip (I’ve been told I’m a bit of a drip)!! He suggested a Flonase mist type of spray. I again think sleep apnea/GERD etc play a huge role in ILDs (Interstitial lung diseases). Regarding OFEV I have had minor issues with it. I take it with Zofran 8mg after i eat late mornings. I think diarrhea is more common with Esbriet from what I’ve read but i may be wrong as I’ve never used Esbriet.
As the officer on Hill Street Blues would say: “Let’s be careful out there.”
Doctor Don