Sunday, September 28, 2014


I spend my days listening to the constant hum of the oxygen machine to which I am attached 24/7. At bed time, add the air from my BiPap to that noise. Makes going to sleep a challenge. Not to mention the side effects of my medication which cause insomnia. Sleep is elusive; sometimes it comes, sometimes it doesn't. Last night it didn't.

50 feet of oxygen tubing curled like a snake in my room that everyone is always trying to avoid tripping over, or even better, standing on and stopping the flow. I have to drag it around with me wherever I go, but am limited by how much distance the tubing gives me. I can only make it to the bottom of the stair case, so going downstairs means using portable oxygen but those tanks take over 3 hours to refill. With so many appointments I don't like using my portable oxygen at home; I want to keep those tanks filled and ready to go at all times. Trying always to avoid having the cannula yanked off my face; not as easy as one might think too!

Keeping track of the schedule of changing the nasal cannula, the oxygen tubing, washing the filters, adding water to the humidifier on the oxygen machine and the BiPap. Taking my meds. There is a never ending list of chores related to needing oxygen and being sick. If it weren't for my Mom none of this would get done!

The feeding tube the Transplant Team wanted me to have surgically put in because of my swallow dysfunction requires daily maintenance. I'm not using it yet but it needs to be cleaned, flushed, rotated. Post transplant it will go into use. But until then, I must keep it clean.

Every time a phone rings our hearts skip a beat. Is THIS the call? No, not yet.

Dealing with a trip to anywhere is a monumental undertaking requiring portable oxygen canisters and since they only last so long, figuring out how much we need to bring, how to transport it, can I get switched over where I'm going or will I have to stay on my own portable tanks? Depends on where I'm going. My brother has become my "expert" at handling all the tanks and I have dubbed him "Tank Man". He is a huge help with this!

I try to distract myself. I'm working on positive affirmations, listening to music to relax and take my mind off of it. It's hard.

The days go slowly when you are waiting for something you so desperately need. It's worse than being a child waiting for Christmas. And yet, here I am already 10 months into this; I'm shocked by that! How did that happen?!?! Yet, here we are.

Coughing fits that seemingly never end. Pain, exhaustion, I can't breathe.

Tomorrow I have a doctor appointment that will require two people to help get me there and manage my oxygen. Tuesday and Thursday are always Rehab. Each week a repeat of the one before, marked only by which doctor I may be seeing.

I'm listening to the humming of the oxygen. And waiting for the call. 

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Bronchiolitis obliterans is a disease that causes destruction and scarring of the small airways of the lungs. As the scarring and hardening of the lungs gets worse, it becomes harder and harder to breathe.

This condition is essentially irreversible and treatment is mainly supportive. The lungs can never return to normal.

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