I Owe You

 Hello friends,

If you’ve been wondering how I’m doing, you are in good company. Keeping people updated about my health the past year has been challenging: with few exceptions, I’ve kept things (and many details) to myself. Not letting people into my journey (so different from my lung transplant patient life, which I narrated, philosophized, and didn’t hold much back) leads to isolation, depression and loneliness playing in an infinite loop. I now find myself way too behind and too easily exhausted - even my immediate family has difficulty getting updates from me - that I’m back to writing a health update here. 

It’s so hard to communicate how I feel these days. Most days I feel ok-ish. I’m able to run a simple errand or two without much difficulty. Some days I’m incredibly tired and I need to rest or relax after virtually any activity. Some days I’m nauseous, during some of those times I get sick. I am almost never hungry. Some days I’m especially spaced out. Every week something unexpected will come up with my lungs or kidney requiring additional last-minute appointments for labs, scans, and medication or prescription changes. Most days I experience these symptoms to a greater and lesser degree. Here are more details:

1. My lungs have been in chronic rejection (not super treatable) for nearly a year. Thankfully my lung function has stabilized around 50% most likely due to photophoresis treatments I’ve done. This is enough function to not have to think about breathing or getting breathless most of the day.

2. My kidney is in really bad shape. As in, it’s operating at less than 5 percent than it should. This has led to some unpleasant secondary problems, too. My labs have declined steeply for roughly the same time as I’ve had the chronic lung rejection. But Little Nate is hanging in there! I am still producing urine and my fluid retention (from liquid I take in but that my kidney is not able to convert to urine) has not been hugely problematic. (i.e. no trips to the ER with breathing difficulties from fluid in the lungs.) Dialysis is in my very near future.

3. My mental health has been quite poor. My mind tries so hard to make sense of what may ultimately be a non-sensical phenomenon. I’m looking for a road map, and failing that, I want to create one for myself, to know where I’m going, when I’ll arrive and what stops there will be along the way. To know when I’ll be too far gone to be able to enjoy doing life things.  [Insert something profound.]

Like Porky Pig says, that's all for now, folks!

l