Treating the Uncertainty Virus

IVIG Treatment: Long, restless, uneventful...mmm, hot chocolate!

I am admitted this week for IVIG treatment. As expected, there's waiting, multiple attempts to find a cooperative vein, and a ruthless blood pressure cuff. There's also lack of sleep and concrete answers.

One concrete thing that happens is a chest x-ray. Due to my cold turned sinus infection turned relentless cough, my doctor has ordered it to rule out pneumonia. Last month, cough/cold/sinus infection graduated to pneumonia.

Six hours into treatment, a couple  of hours after x-ray and five minutes into potential actual sleep, the nurse parades in, flipping on the lights and looking pleased.

"Good news! Your lungs are clear. No pneumonia."
"Great." I smile halfheartedly. I feel a strange disappointment at this news.

What!?! I spend  time thinking on this, trying to understand my reaction. I realize my disappointment is not at the lack of pneumonia, but the lack of diagnosis, strategy, plan. My experience tells me if I have pneumonia, it is black and white. Treatable. Under control. But without a diagnosis, there is uncertainty: not knowing why I'm sick, how long it will last or how to get better.

Since I have the time, I push myself deeper into my own head. It's not just the uncertainty of how to rid myself of a resistant and draining cough, it's that uncertainty is the overwhelming theme of my post-transplant life.

1. Here's 2 new functioning organs. We're uncertain if and when your body will reject them.
2. Here's your immuno-suppressant drugs. We're uncertain how your body will react to them and we're uncertain how necessary, what the right dosage is and how to test for efficacy with half of them.
3. You have parvo, a common virus that 60% of adults have and their immune system defeats it almost immediately. In your body, however, it brings on anemia, exhaustion, blood transfusions and hospital stays. We're uncertain if your body will ever defeat it, how the unapproved treatment we're giving you actually effects the virus, and how long it will take to be potentially effective.
4. You have repeated and resistant cold/cough/respiratory issues. We're uncertain if this is because your immune system is busy losing a battle to parvo, how to treat it, and if this will be a chronic issue.  

Uncertainty is a virus.
It takes over when my defenses are down. 
It's exhausting and scary and time-consuming.
And like anti-rejection meds, CMV and parvo, I've got it for life.

I'm still wrapping my head around this and how to deal with it.
Hmmm...
1. I can get stuck in the anxiety.
2. I can use it as motivation. 
I choose motivation. Motivation for acceptance, living in the moment and embracing the adventure of living. 

Maybe not as easy as it reads, but writing it down gives me a concrete reminder, my own personal prescription for how to treat the uncertainty virus each time it comes back.