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.


18 thoughts on “Tethered II

  1. Lori–ask and you shall receive. I’m in contact with an engineering professor at Northwestern (our alma mater!) on your snarled cannula problem. Please contact me so we can discuss details.

  2. I’m reading this thinking how amazed Your grandchildren are going to be when you tell them all these stories.

    Hang in there.


  3. We continue to pray that you get “the” phone call. Always love your updates and although we aren’t there with you we are walking alongside you in this…you’re never alone!

  4. Thank you for the update. I will continue to pray that the transplant comes soon.

    “Lord, thank You for giving Lori strength to endure this difficult time with a good attitude. Give wisdom and skill to the physicians who are caring for her, and work out the details for her transplant to take place soon.”

    God bless.

  5. Someone at MIT or CAL Tech needs to come up with an oxygen tubing system for a scooter that is something like wireless internet–it delivers everything you need with nothing to trip over! I’m praying you will be able to remain out of the hospital and at home. Your sense of humor helps us all…thanks for keeping it.

  6. Off the subject…I LOVE your hair natural. Such a pretty color and I can tell you’ve lost weight by your pretty face. You look great, Lori. Hang tough!

    • Thanks, Jude! I like my hair much better this way too — though whenever I go in the hospital, roomies always ask if the kids are my grandkids!

  7. I continue to be touched by your courage, perspective and sense of humor, in the face of challenges and situations that most people can’t even dream of, myself included. Thanks for writing this blog, Lori, to remind me of the things that I take for granted and the ability I have to choose my perspective.

    Like Laura, my wish for you is that you receive the call you are waiting for soon.

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