Utilizing Technology While Living with Pulmonary Fibrosis

[Phillip Jacquart]

I am using a Garmin Vivosmart 4 device to monitor my oxygen level at night, among other things.

[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.

[Mark Koziol]

Hello Kent, thank you for sharing your story about yourself and your father. It’s amazing how this disease can devastate a family. Thank you for presenting the o2 vibe to the pf forum. I didn’t know this existed and I am sure many of our members were unaware of this device. It sounds like this device serves a purpose physically active members might want to further investigate. Thank you again, mark

[Ken Hook]

I’m hoping someone can help me understand the reason my VO2 max readings from my Garmin watch. I was recently (Nov 2019) diagnosed with nonspecific interstitial pneumonia (NSIP), albeit mild per the diagnosis. From most of my research, exercise is the best medicine to try to improve PF. I starting tracking my exercises (cardio, strength, wogging, part walk/jogging, on Dec 3rd. According to my Fenix 6 watch my VO2 max declined in Dec and more so in January when I was able to actually jog for a mile. Last week while jogging my watch provided a messaged saying “training status non productive. Was alarming, and upon some research it appears my heart rate and other factors running through the algorithms indicate I’m not getting enough oxygen for the load I am working at. Should I be concerned? My current VO2max is down to 32, whereas in Nov it was  ~40 and slightly lower in Dec. I thought the exercise would ultimately help increase my lung functions, and I’m not sure these results are counter to that expectation.

[Mark Koziol]

@norcalwaverider

Hello Ken, I am not familiar with the device you are referring to. However, sometimes devices do not work as they are supposed to. I would contact my physician stating your concerns and also contact the customer service department for the device. I would hope they have a medical consultant who would be able to help you. Thank you for sharing. I am sorry I am not able to help you with this matter but you gave the forum members another suggestion for a device that can monitor their health. Take care, mark.

[Charlene Marshall]

Hi Phillip,

Thanks for sharing how you best manage your oxygen levels at home. I’ve heard a lot of good things about Garmin products, so I’m hopeful they are effective for you. Please keep us posted on how you’re doing and thanks for writing.
Charlene.

[john sliwinski]

Does anyone know of a wrist device that also keeps track of your pulse ox?

[JillT]

@johns

 

The first reply in this topic refers to the Garmin Vivosmart 4 and the second talks about the O2 Vibe. Both measure oxygen saturation. I think that most sleep monitoring systems also measure O2, but best to check the individual device descriptions to be sure.

The Vibe seems to be more expensive than the Garmin.