The Machine

I have a machine in my bedroom that breathes. Well, it sounds like it anyway, it has a gravely kind of inhale, then it exhales in sudden, rhythmic bursts. Attached to the machine is an opaque green plastic tube, 15 feet, 25 feet, often times 40 feet, and sometimes 65 feet. In addition, there is a clear plastic cannula at the end of the green tubing that is currently allowing three liters of oxygen to to flow into my nose and hence my lungs and blood stream.

On our way back from Mayo Clinic last Saturday we stopped at a store in the airport and I bought my first set of Beats. It didn’t occur to me at the time of my purchase just how important my pretty little pink urBeats Earphones were going to be.

That machine runs 24 hours a day, seven days a week. Some times it’s the only thing I can hear. The OCD in me starts to count the inhale and exhale of the machine, then it’s 2am, 3am, 4am; 254, 255, 256, 257…

They ran a lot of tests at Mayo this time; 15 appointments in three days. The outcome of some were great, but as always some of the results weren’t the greatest. My bone marrow biopsy showed no “minimal residual disease” meaning my MRD is totally negative, no Amyloidosis, still in remission! The heart catheterization didn’t yield the greatest results though, that one showed my heart is getting worse. Not very fast by most heart failure standards, but like watching grass grow, it’s moving along at it’s own pace. It probably has something to do with the fact that I’m in heart failure because of the Amyloidosis and not by means of a more common reason. The doctors made some minor medication changes and said I will require supplemental oxygen for the time being. Living at almost 6,000 feet probably doesn’t help with my oxygen intake. We did agree, because of the slow nature of my heart failure, I didn’t have to return in three months, I could wait six months and return in April, thank God for small favors. Of course if something with my health were to dramatically change between now and April I would have to return sooner.

More about this machine; it drives me crazy! I find myself going into other rooms where I can’t hear it as well. Unfortunately, there isn’t a room in the house I can’t hear that thing inhaling and exhaling ad nauseam. In come the pretty little pink earphones…you knew where I was going with this. Not only do they completely obstruct the sound of the machine, listening to music curbs my anxiety and I can fall asleep listening to my favorite tunes, BONUS!

Being tethered to a machine can be a bit of a drag, especially when you get yourself wound up in your own oxygen line prepping dinner and almost trip and fall on your blind dog. I’m not stuck in the house though, I have a little portable machine that I can carry around with me when I go out. How fun does that sound? NOT! I don’t mind it really, I understand why I need it, but it’s not exactly the new Fall accessory I wanted to add to my wardrobe this year. That being said, I feel better with more oxygen in my system and I have more energy to do some of the things I like to do.

 

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