[Kent Allison]

I am a 64-year-old, second generation IPF patient and I was diagnosed with IPF 4 years ago. I use oxygen around the clock but I still go to work every day. I go back to the Duke Medical Center in 5 weeks for a week-long lung transplant assessment. IPF took my father’s life when he was 77, so my family knows all about IPF.
I have used an O2 Vibe Sleep & Fitness Monitor by BodiMetrics every day for more than 2 years. I love this device because it gives me a constant all day real-time O2 reading, and stores my O2 levels for all day, and sends that information to a very simple app on my iPhone. I can even print out an easy to read chart of my daylong O2 levels for my pulmonology team. This is a pulse-ox you wear on your wrist that uses a sensor that fits on your thumb or finger. It is not like a regular finger-tip pulse-ox that prevents you from using your hands for other activities. This device does not limit your activities in any way other than you just can’t submerge it in water. I am wearing my device while I type this post.
This is the only way I have found to self-monitor all day long. All of the devices discussed by Charlene are good for what they do but none of them do what IPF requires. I want to remain safely and cautiously active while I pursue my IPF options and the only way to do that is to know all day long how my oxygen level is doing. Otherwise I will be too sedentary out of fear or I will overdo it and beat up my organs with low saturation levels. The O2 Vibe vibrates when my saturation goes below a level that I set. I set it at 90% because that‘s what I learned in Pulmonary Rehab. This device allows me to stop or slow down or sit down when I need to and reminds me to stay safe and not beat up my heart, brain or other organs with dangerous lows. This is just like a continuous glucose monitor used by diabetics. Anyone who wants to stay as healthy as possible and to be aware of how they are doing every day should try this. I think this should be the required standard of care for ambulatory IPF patients (which is 90+% of all transplant candidates). Also, at $199.00, it is much less expensive than an Apple smartwatch.

[Kent Allison]

I have been on gabapentin for more than 3 years now and it has almost entirely eliminated my coughing.  I take a 600 mg tablet 3 times a day and never miss a dose.  If you haven’t tried it, you should!  Good luck.

Kent Allison