First of all, how is it September already?! Is anyone else feeling confused by how fast this year has flown by? Not that I’m complaining. Fall is by far my favorite time of year. Instead of worrying about being swimsuit ready, I can finally focus on being sweater ready, which is what I’ve been not training for all year. The air turns crisp in the evening, complimenting my sleep-with-the-bedroom-window-open policy. It’s a time for cuddling, which I’m seriously a professional at. Don’t even get me started on Fall foods…(I realize you can eat these all year, but they’re better in the Fall): caramel apples, pumpkin anything, Ham (Henry chiming in on that last one).
And it’s also nice to be reminded that not even the earth is exempt from change. Leaves turn from green to red to yellow to brown; one season leading slowly and gracefully into another, almost imperceptibly. I feel my life imitating this pattern, albeit not as balletic. The past year has been one adventurous season after another, intermixed with moments of stillness and anxious calm. All the while, my illness has slowly inched it’s way forward; it’s changes marked, not by an outwardly colorful change, but by more subtle, undetectable variances. From one day to another, you would hardly notice the difference. But when viewed from a greater distance, it’s shocking to see how far I’ve come.
My oxygen needs, once at a consistent 3 liter level, now fluctuate between 6-10 liters. I feel tired and lazy most days. My personality has taken a more softened, muted approach in a survivalist effort to conserve energy. My goofy, impromptu dance parties are now a thing of the not-so-distant past. Every move, stair trip and outing is highly calculated and measured in oxygen tanks. And there are things that I miss. I miss dancing. I miss singing. Even my laugh has taken a hit to avoid the painful coughing attacks that often follow.
It’s weird when I look back and remember the girl I was before I had this disease, and in some ways, still am. Sometimes I miss her too. I find myself dreaming of the day when the pendulum of this life and trial will finally find it’s resting place in the center of who I am, and there she’ll be…waiting, ready to pick up where we left off.
I know she’s still inside me, that girl. And yet, these challenges have introduced me to a version of myself that I never thought I could become. This version is learning how fragile and precious life is. She’s learning patience…Lord, is she learning patience. She’s learning the importance of eternal families. She’s learning to live in the moment. She’s learning the importance of organization, routine, and how to work efficiently. She’s learning humility. And she’s learning to love herself for who she is…right now. Tubes and all.
By way of update, and to answer your questions: no, I’m still not on the lung transplant waiting list. Yes, I thought I would be on that little list by now. Heck, we thought we’d be on it as early as May. I’ve been doing hundreds of tests to get on the list, but every time the doctors find something of concern, they dig, and by dig, I mean, excavate! Tests for tests for tests. We’ve been in San Francisco a little over two months now, yet it seems like we’ve been here forever already. Testing, waiting, hoping. This is starting to sound like a familiar song. The team at UCSF have had trouble with my diagnosis. They really want to get to the bottom of my disease. Reason being, it will determine the score I get when they rank me on the list.
To educate those of you who don’t know how the transplant list works, once you are approved to be placed on the transplant list through a specific center (in my case, UCSF), you are given a “Lung Allocation Score”. This score is a numerical value used by the United Network for Organ Sharing to assign priority for distributing donated lungs for transplantation within the United States. In other words, the sicker you are, the higher you’re ranked, and the sooner you get your lungs. The system used to be a first come, first serve basis. Luckily the government came in and changed this because, to put it frankly, people were dying waiting for organs.
Back to my story, they were having trouble diagnosing me, so they have been doing tests so they can rank me under the correct disease (some diseases get higher allocation scores than others.) Knowing the diagnosis can also help predict how my body could respond to the medications I would receive post-transplant. So, the waiting and testing is really all for the best. And heaven forbid they should transplant my lungs too soon only to find out that my disease could have been treated.
One of these recent tests I had done was a bronchoscopy. This is a procedure that allows doctors to look inside my lungs and also retrieve a small lung sample to biopsy. The goal was to get information to help shed some light on my diagnosis.
The tests came back and they now think I could have something called Hypersensitivity Pneumonitis. They also think that this is something that could possibly respond well to treatment! For the next 6 weeks I’ll be monitored on a couple new medications and we’ll see how I do. Three things could happen: I could get worse, I could stay the same, or I could…improve.
Either way, I’ve been approved for listing, and if all else fails, they’ve assured me that I could get listed in as little as 5 minutes. So we’ll see. The doctors are no longer convinced that I have PVOD. I don’t have Pulmonary Hypertension. If this diagnosis doesn’t pan out, I believe I will be listed under the umbrella of pulmonary fibrosis. But maybe the medications will work, and I’ll improve and we can at the very least put the transplant off a few years. You never know.
Until then, I’ll just plow ahead. Slowly. Steadily. Subtly. Like the coloring leaves around me, ready to usher in a new season of faith, healing and hope. Now for my third cup of hot cider for the day.
“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taught, or raise my hands to the sky and want, more than all the world, your return.” – Mary Jean Iron