The Waiting Waltz

Dance2Two weeks in and I think I’m starting to get the hang of Life on the List. Thankfully, I no longer experience that little squirt of adrenalin every time my cell phone rings. Several calls from family and friends on my birthday last week were enough to break me of that heart-pumping annoyance. Even the calls that show up “BJH” (Barnes) on my caller ID don’t get me going — I know it’s probably someone from the transplant center with a question about my next appointment.

But my nonchalance over a few chirps and vibes belies a much more delicate dance taking place.  I had my first bi-weekly appointment with the transplant team a few days ago and emerged with a different picture of my situation. While my numbers haven’t changed that much — my FEV1 (measure of lung capacity) dropped a point and my blood work is the same — I’ve been struggling with my oxygen sats at home. We know that as long as we can push enough O2 into my lungs, my body will do its Energizer Bunny imitation (albeit a slo-mo verstion!)  The problem is my home O2 set up. Concentrators don’t deliver 100% oxygen, especially when they are running full-out all the time. They get close — mid 90s maybe. But my lungs are stingy.

When I need “bonus O’s” to supplement the two concentrators, I add 15 lpm on a non-rebreather mask from one of my portable liquid O2 tanks.  LOX, however, can get cantankerous, especially at high liter-flow. The tanks freeze up and flow can be inconsistent. Plus it’s difficult to know exactly how much O2 is left in a tank because LOX uses a fish scale gauge rather than a regulator.  Combine that with freezing and I find myself sucking on empties far too often.

The result is that at home it’s hard to force adequate Os into my busted lungs.  I’m fine while sitting still. In fact, I can nail sats in the mid- to high-90s while lounging about. But any movement… who would have thought going to the bathroom — something as simple as dropping trou and sitting down — would zap my sats down into the 60s. I’ve started using my scooter to get around the house and that’s actually helped a lot. It’s much easier to deal with the bathroom if I don’t have to walk 50 feet to get there. And I’m talking to Lincare, my oxygen supplier, about adding gas E-cylinders to my home O2 set-up. Gas cylinders give a more constant flow and they don’t freeze up.  And if I can get a 25-liter regulator, I’ll be in O heaven.

In the meantime, the transplant team told me I may end up spending my wait time in the hospital, where 50-psi oxygen, OptiFlow and ECMO machines will make it easier to stay oxygenated. For now, they are leaving that decision up to me. As I long as I feel like I’m getting what I need at home, I can stay put. And that’s exactly where I plan to stay, as long as I possibly can.

What the Heck is Going On?

Once I get The Call, my family will be updating everyone about my progress through CaringBridge.  The easiest way to keep in touch is to sign-up for email alerts from my CaringBridge page.

Until the Call comes, I’ll continue to post about “Life on the List” right here at Reality Gasps. So keep checking in!

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6 thoughts on “The Waiting Waltz

  1. Lori – you continue to be an inspiration to us all! We think of you often and pray your cell rings soon with good news! Hang in there!

  2. I love reading your blog. You certainly are an inspiration to me. My condition is a little behind yours but your description is exactly like my life just at a little lower oxygen need (10L instead of 15L but need increasing rapidly) Hang in there and Im praying that phone call comes soon.

    • Beverly, I will keep you in my prayers as well. Are you listed, or is that not an option for you? I have faith that one day soon researchers will unlock the mystery of this disease and finally stop the suffering. Until then, all we can do is focus on each day’s small triumph and find something to laugh about as often as possible. 🙂

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