This should be “Going Home day”. Dr comes in around 9 am and confirms that I can as long as the lung dr clears it. I go down for pulmonary functions tests. These will serve as a baseline I guess, see how well I can inhale/exhale. Later tests will be compared which will show stability or progression.
The lung dr does his rounds a little later in the day. I can tell by his demeanor that it isn’t good. The PFTs show that I only have about 50% lung capacity and because of all the scar tissue I have a diffusion problem, meaning what oxygen I can take in has a hard time getting into the blood stream – oh, and I have asthma. Great! He also says that I need to see the heart doctor for a heart cath because I bled more than expected so there’s a good possibility that pulmonary hypertension risk is probably worse than what the echo shows. BUT here’s an inhaler-maybe this will help-
Yeah, thanks for the death sentence Doc.
Needless to say I’m overwhelmed but at least I’ll get to go home – with oxygen, a nebulizer for breathing treatments twice a day, an inhaler, prednisone and now I get to take showers sitting in a chair.
YAYYY….NOT
My oxygen gets delivered around 4 pm and we head home. I take a shower, sitting in my shower chair with oxygen on – this is SOOO weird to me, but it feels so good too. My middle one made dinner while I was in the shower. What a sweet child
I sit down and open MyChart, I go to the lung dr notes from today as they weren’t in their earlier and I read “MAY NEED EARLY LUNG TRANSPLANT REFERRAL” and I LOOSE IT – all of the emotions from the week flood me and I stand there in the kitchen and CRY, and not just cry, it’s a SOBBING, uncontrollable cry and all my husband can do is hold me. But in that moment that is all I wanted.
After what seemed to be an eternity I think about it from another perspective – this actually would allow me to live. A new set of lungs, not damaged by Covid – or lupus – or whatever this thing is that is robbing me of air and of life right now.
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