So I can not breathe on my own

Goodness sakes I was diagnosed in 2014 with Pulmonary Fibrosis, then succumbed to heart failure in 2017, and now in September 2018 can no longer walk, bathe without extreme difficulty. I was admitted to the hospital in Baltimore where they placed me on a High-Volume Nasal Cannula (HVNC) oxygen delivery system ( Vapotherm ). OMG! What a godsend! First and foremost, it delivers > 10 LPM < 60 LPM . ( Now don’t quote me on data specifics, if you want to elaborate the technical details of the Vapotherm please do so in a kind manner so other readers can get the correct information. Better yet go to the Vapotherm manufacturer’s web site : )

So here I am in the hospital , my pulse oximeter saturation at rest is < 94 when I arrived , then in the ER they connected a nasal cannula & oxygen from the wall at 10 LPM  but my heart rate was fluctuating > 100 < 160 , and my normal heart rate at rest is 56. I have low blood pressure. So I was still feeling distress, and I told them I am not comfortable. So since I am on the UNOS transplant list, they admitted me to MICU (medical intermediate intensive care ) and that is when they placed me on the Vapotherm. They adjusted the Vapotherm so that I was getting 15 LPM and Fio2 60.

I stayed on Vapotherm for over a week , and then they started to ween me down, so that the FiO2 is < 50 . So I am asking myself the question what is the best FiO2 for someone with acute pulmonary fibrosis? I can not walk without my pulse oximeter tanking below 88 % , I have tried to walk intentionally ( way slow ). The only thing that works is to up the LPM to 15 now and sometimes 25. This means I use E-Tanks to be mobile. That sucks big time, but at least I can walk around my room. I do not like staying in bed….no not yet.

So I am now at home after 1 month in the hospital, and I got an Airvo 2 HFNC ( high flow nasal cannula ). The initial setting by the respiratory therapist meeting us after discharge is 15 LPM and 63 Fi02, my home concentrator was set to 9 LPM. Then they left. I am not alone at home ( thank God ) my daughter (bless her) has taken me in to her family and care. So we looked at each other and said we need to learn how to work this machine!

What happens when we adjust the home concentrator unit ? Does the FiO2 change ? Yes! If we change the LPM on the Airvo only does the FiO2 change? No ! So I am so confused.

My next step is to understand FiO2 what does it mean? So the classic google definition for FiO2 = Fraction of Inspired oxygen ( so to people like me this means “the % of air taken in” ) Short story normal ambient air , no machine you are breathing on your own is 0.21 . So in an ideal world for someone like me who can’t breathe normally an FiO2 of 0.5 would be fine. However, I need to observe my pulse oximeter saturation level when at rest to figure it out. So I am shooting for a 94% saturation at rest?  90 % saturation while walking? Geesh why is this rocket science?

Okay, so the experiment begins. Anyone else have an Airvo at home ? I don’t want to stay in the hospital waiting for my transplant. That could be 6 months from now since my LAS ( lung allocation score ) is 52. Thanks for your help. BTW did I tell you guys I was an engineer in my pre-heart failure days. So I enjoy hearing and learning about technical details. I am my biggest advocate for staying healthy. oh yeah, did I tell you my Airvo Shutdown on its own during day ? What fun was that? Luckily I have many E-tanks to my rescue. I keep at least 6 tanks available per day, I am thinking of increasing that number to 8.