Four weeks down and two to go before I get the cast off my ankle and so far it’s been a long, frustrating month. Since bad lungs and a gimp leg do not play well together, I have been chair-bound throughout the entire convalescence. When my husband heads to work and the kids leave for school, it’s just me, my grabber and the bedside potty. I’ve watched all the cooking shows I can stomach, plowed my way through half the Alex Delaware series by Jonathon Kellerman, and reached the diamond level on WordHero. But it’s not the mind-numbing boredom that disturbs me — I know that’s just temporary. It’s the realization that I am glimpsing a future that is frighteningly close.
Simply standing up to transition from the recliner to my wheelchair leaves me breathless and drops my sats into the 70s. I am now sitting on 20 lpm of oxygen, upping that to 30 or 35 if I do anything. In short, I have pretty much maxed out what I can get from a home 02 system. And as a result, I have become beholden to my family for, well, everything. Meals come when there’s someone here to make them. Thankfully my husband works 10 minutes away and returns home each day to prepare my lunch. Going to the bathroom, brushing my teeth, washing my hands, showering, getting ready for bed — all the basics of “daily living” require a coordinated effort between me and my family. And while I chafe at the loss of independence, they deal with the mounting stress of suddenly becoming full-time caregivers in addition to everything else in their busy lives.
My expectation is that when I can once again stand on two unencumbered feet, I will be able to move about the house without asking for assistance. But my disease is progressing faster than I expected. My pulmonologist urged me to get to Barnes-Jewish Lung Transplant Center as soon as possible, so I’ve scheduled a second evaluation for November 26. I still have about 25 pounds to lose. But as my oxygen needs rise, and my average 02 saturation level dips below 90, the fear is that I may develop heart or other problems that would reduce my opportunities for transplant. The List is my one big hope right now, and I need to get on it!