Is this progression or an infection? A reaction to the weather or some other episode? These are the questions I ask every time my cough gets worse or I have more shortness of breath, or my sats just won’t stay up. They’re the same questions everyone with PF asks. Because this is a ninja disease. You may be stable for months, years even, and then BAM! Without warning, your condition worsens almost overnight.
That’s what I’m wrestling with right now. Is this progression, or just another infection? I was in the hospital with bacterial pneumonia in early July — 6 days, including 2 in ICU. But I responded quickly to treatment and came home almost at baseline. Almost, but not quite. I had been resting on 6 LPM and found I was more comfortable at 7 LPM. And before the infection, I’d been moving on 10 LPM, but after I definitely needed 15 LPM. My doc told me not to worry; it takes a long time to fully recover from pneumonia, and since this was my third bout, it would take longer still.
I settled in for a quiet summer of resting and steering clear of potential infection sources (i.e. crowds!) But I still felt like I just wasn’t getting better. We played with my prednisone but even that didn’t help. Then, two weeks ago, I was having trouble making it down the hallway without getting short of breath. My sats weren’t holding, either, so I kicked up my oxygen another notch — 8 LPM. When I woke up with a productive cough (my cough is ALWAYS dry), I called my doc. He put me on oral antibiotics and bumped up my prednisone again. After a week of antiobiotics, I wasn’t coughing up gunk anymore, but I still felt lousy. And my sats were falling again.
As it was, I had maxed out the oxygen system I had available at home. My 10 liter concentrator only yields 10 LPM if I use a 7 ft. hose — that’s the same length you use with a portable tank. A 25 ft. hose — which allows me to move around my bedroom and to the bathroom — yields 8 LPM. My portable liquid tank goes to 15 LPM, which means that anytime I want to move more than a few steps, I have to use my portable. I talked to my doc and we added a second 10 liter concentrator. They are Y’d together and with a 25 ft. hose, I get 16 LPM. That’s perfect right now — sitting on 16, I can keep my sats right around 90%. I still need to use my portables if I want to go anywhere else in the house. I’ve Y’d two of them together to give me 20 LPM so I can make it out to the kitchen to eat dinner with the family. The problem is, at these high flow rates, even liquid portables don’t last long — maybe half an hour at 15 LPM. I can probably get 45 minutes to an hour when I Y two together (10 LPM each for a total of 20). That means excursions beyond home are impossible. I can do doctor visits, but lunch with friends is off the table.
One of the big side effects of pumping such high O2 levels is nose bleeds, lots and lots of nose bleeds. Even with a bubbler on the concentrator, my sinuses are parched. I use Ayr gel and Ayr saline spray throughout the day, which help. But the assault on my mucous membranes is vicious. My doctor prescribed a new machine called the MyAirvo to help with this. I was on one in the hospital (where it’s called OptiFlow). It humidifies and heats the oxygen, so it is much easier to breathe. It’s also quieter because you don’t get the “rushing air” sound through the cannula. On the downside, however, the tubing is only 3 ft. long, so I have to switch off to a portable to do anything. And I will need to add a third concentrator to get enough oxygen flow to keep my sats up. Right now, when I use the MyAirvo, I have to Y in a 3 LPM from my liquid to keep me sats even close to 90%. And then there’s the machine rental itself. It’s an expensive piece of equipment, and it’s so new that most insurance companies (including mine) don’t cover it yet. So I’m deciding whether this is right for me just yet.
When I look at my oxygen numbers, they just seem ridiculous. From what I’ve seen, most people don’t use oxygen at this level until the bitter end. But I’ve always seemed to require higher O2, and my body still feels like it’s raring to go (okay, not raring, but eager). I’ve had a couple of crazy instances where my liquid ran out and walked 20 feet or so without O2 — I crumpled on the spot like a marionette without strings. I was still conscious and talking, and as soon as I got oxygen and brought my sats up, I was up walking again like nothing happened. At least for now, I’m only limited by the Os I can get up my nose. I pray the body hangs in there with me.