Tethered II

Today marks week #6 on the transplant list and my disease continues to progress. Everything slowly is getting more difficult, usually requiring more energy and breath than I can muster. As a result, I confine my bipedal forays almost exclusively to Pulmonary Rehab and the 6-minute walk I must endure at my bi-weekly clinic appointments.  Around the house, rather than hoofing from one room to the next, I rely on my trusty chariot — a zippy 3-wheeled scooter that miraculously squeezes into even the tightest alcoves and closets.

The scooter is truly a Godsend, affording me the kind of speed and agility I haven’t experienced for a very long time. It saves my breath for the really difficult maneuvers, like going to bed or getting a drink. But it also adds a whole new dimension of insanity to my ongoing issues with snarled cannula.  On my feet, it was no big deal to reverse direction and walk back around any obstacle my cannula encountered. Now, that same action often requires a deftly executed three-point turn, the occasional ding to cabinet or wall, a terrorized dog, and a bit of mild cursing.

Most annoying, however, is the constant battle between 50 feet of cannula and three spinning wheels. Toss in a persnickety “Y” connector that joins cannula to concentrators, and you have a disaster that plays out daily. Oxygen tubing is not cooperative. It does not lie flat or slide along in a nice orderly fashion out of its neat coil. It prefers to bunch and gather, especially around corners, ripping itself free of the Y connector on one end, or my face on the other.

But my cannula really shows its fickle ways while I am riding down halls, around furniture, and through rooms. It wraps itself around tires, knots up under the axle, or gets itself stuck in the tiny “anti-wheelie” wheels at the rear of the scooter. Often I will be jetting along down the straight-away (hall), only to have the cannula ripped from my face as it catches briefly under a wheel. I’ve tried coiling the cannula as I go, threading it through the arm rest to keep it free from spinning tires, and readjusting the tubing to keep it out of scooter range. But nothing is fail-proof.  I still hold out hope that some clever engineering student at MIT or Caltech will lay down their latest Robot Wars entry long enough to design a workable hose reel for oxygen tubing. They will be an instant Rock Star among gaspers everywhere!

Though cannula and scooter may not be the best-suited cohorts, together they provide a sense of freedom that I cling to everyday. Unlike Pulmonary Rehab where I can do 30 minutes on the treadmill (supported with 40 lpm of oxygen, constant monitoring, and a snail-like pace), taking three steps at home leaves me gasping. The scooter opens up the world (okay, the house) to me. With it, I’ve been able to enjoy a few sunny afternoons on the deck and get my own lunch — small but very important victories. If the call doesn’t come soon, I will likely finish out my waiting in the hospital. But for now, the scooter is helping to keep me firmly planted at home where I can ride to the end of my 50-ft. tether and view the landscape from a new perspective.

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Tethered

I use supplemental oxygen 24/7.  That means wherever I go, I have a cannula strapped to my face and a plastic tube connected to my oxygen source.  When I’m on the go, I use a short tube attached to a portable oxygen tank. But at home, I have a 100 ft. “umbilical” that snakes between me and my oxygen concentrator.

My oxygen supplier frequently warns me I shouldn’t use anything longer than 50 ft. because the longer the tube, the lower the O2 flow.  But with my 100-foot tube, I’m free to roam just about anywhere in my house. So, I’ve worked out a compromise — for bed, I plug in with a 25 ft. tube and save the ultra long cannula for daytime.  Convenience has its price, though.  Like when I get myself all wound around the island in the kitchen.  Did I go right or left?  I can’t tell you how many times I’ve gone to the kitchen for something and started back out, only to have my head snapped around as the cannula pulls tight. The kids still smile when they see me backtrack and do a reverse circuit.

Feet pose another obstacle.  It’s not tripping (for me at least) so much as it is standing, as in, “please move, you’re standing on my cannula.”  Standing on my tubing doesn’t hinder the oxygen flow, but it does stop me in my tracks. I thought when I switched to a green high-flow cannula, this little annoyance would be rectified. To my surprise, the family tromps even more on the highly visible green tubing.  My guess (hope) is that they’ve grown so used to my O2 set-up, they don’t really notice the cannula anymore.  Or it may be self-defense on their part.  Whenever my cannula goes taut, I give it a yank, figuring it’s just caught around a corner.  Recently, I’ve been hearing squeals when I tug on my tubing. Seems I’ve been tripping up the kids a lot more than I realized!

Then there are the frequent snarls. Everyone has grown used to me standing in the hall outside my bedroom and growling as I work through another knot. My tubing gets caught on drawer pulls, chair legs and just about anything left on the floor. The dog, of course, takes it all in stride.  He’s become quite adept at disentangling himself whenever my cannula slides by.  And I usually manage to stay fairly unencumbered myself…except for that time I twisted one too many times while making the bed and did a face plant into a pile of pillows. Yes…there were witnesses. We all burst out laughing.

I’ve often thought a portable tube reel (kinda like those retractable dog leashes) would solve a lot of my problems. Unfortunately, nothing like that exists and I am no engineer. Of course, the real answer is “tubeless” oxygen, like wireless Internet.  Oh wait, that’s called “normal breathing”.

In the meantime, while I still have these lungs, I’ll be tethered.  But being tethered isn’t so bad.  The limits of my cannula have forced me to slow down and refocus. I spend a lot of time talking and hanging out with my kids — unhurried and undistracted.  And I’m closer to my brothers than ever.  It’s amazing what happens when you stop thinking about where you should be and concentrate on where you are.

I’ve heard lots of people say they are “grateful” to their disease for waking them up to what’s important in life.  I’m not grateful to IPF — it sucks big time.  But it is part of my life,  a big honking bump in the road. And like all the other bumps, twists and turns I’ve encountered, I’m trying to learn as much as I can from the experience.  So far I’ve discovered that I am surrounded by amazing people eager to help — I just didn’t notice until I slowed down and let them in.  And I’ve realized that if you get stuck heading down one path, you can always backtrack, unwind yourself and try another route.

Photo courtesy of 123rf