Jonathan Poland

Is it safe to assume that your pulmonologist is older (and perhaps not up on modern understanding of rared lung diseases)?  There was a time when “idiopathic” was a catchall term for all unknown lung scarring.  (That’s actually the correct way – I still haven’t figured out when IPF morphed into a specific disease.)  Now, usual interstitial pn…[Read more]

When full-body CT scans were popular several years ago I ask my internist (and friend) if he would recommend that I have one.  He replied by showing me a medical journal article about how they cause more angst and worry than help because we all have internal problems that don’t need treating.  For example, my lung CT also shows a benign tumor on o…[Read more]

I am tracking FVC % rather than actual volume because there is a normal decrease over time.  DCLO is more important to me than FVC anyhow.  The actual FVC volume decrease since the beginning of my journey is roughly 8 oz (i.e. one cup of air).

Incidentally, the increase starting around 1/1/2020 is when I was in pulmonary rehab.  I credit it wi…[Read more]

Hi Bernard,

I’m sorry to hear that you are having these problems and are also having difficulty getting answers from your professional staff.  (I wonder if that is universal?  I’m in the states and have a similar difficulty getting answers…)

Here in the US, most medical professionals would not recommend getting the flu and pneumonia shots at t…[Read more]

Hi Donna,

I feel your frustration!  I find very few doctors who are willing to spend time explaining everything at a patient’s level of understanding.  And I’m not a doctor so take my comments for what they are worth.  But your feelings of uncertainty, etc. are common for nearly everyone who has this news thrust on them for the first ti…[Read more]

Don and Mark,

I’m replying to a comment from several months ago… Finger pulse oximeters are NOT ACCURATE IN SUNLIGHT. The sensors in them get overloaded. If you exercise inside and get a lower reading when doing the same exercise outside,  then your finger oximeter is likely giving you a low reading when outside. They are also not accurate for…[Read more]

Hi Mark,

My pulmonary fibrosis (PF) is still relative mild, as measured by pulmonary function tests (PFT).  And I have significantly improved my PFT results after starting daily cardio exercise in pulmonary rehab.  Also shortly after finishing pulmonary rehab, I read the book “Breath” by James Nestor where different breathing methods are t…[Read more]

Wow Prati, I’m sure it is scary when you experience that kind of pain.  I hope it never happens when you are driving or need focus.

I learned in Pulmonary Rehab that various chest pains can occur with pulmonary fibrosis (PF), and are usually related to a full stomach putting pressure on the diaphragm and lungs.  But there can be other causes r…[Read more]

Hi Pete,

I assume you are in the United States because you mentioned Medicare.  In the US, you need a doctor’s prescription to purchase or rent any oxygen system, including a portable concentrator.  Your doctor won’t specify a particular brand or model, just how much O2 she wants you to have and when.  The doctor’s office probably has a pr…[Read more]

Is it the Ofev or actually the IPF?  My hair is thinning but I’m NOT on Ofev.  The thinning has been going on for about the same amount of time that I had other IPF symptoms.  Or it could be male pattern baldness – my maternal grandfather had thinning hair; but he also had IPF symptoms long before IPF was defined as a disease…

jon

Hi Susan (and everyone else).  I have PF and use O2 for sleeping and exercise.  I am also an engineer, and it is that role that I’d like to explain the differences between home use and portable oxygen concentrators.

Don’t worry so much about the actual amount of oxygen they are producing, but the amount they are delivering into your body.  The po…[Read more]