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.

And The War Rages On...

I am confident and nervous. I am grateful and skeptical. I am eager and scared.
The back and forth makes my head spin and my stomach queasy.

My parvo titer has been rising. For those of you who are not transplant-recipients-with-a-very-rare-immune-system-response-to-a-very-common-typically-asympotatic-virus, this means the level of the parvo virus in my system is increasing. A lot. And the loss of oxygen carrying red blood cells is coming.

"Healthy" is 0. I have never, since diagnosis, reached 0. My initial number, at diagnosis, was 1,030,000 and I felt especially sick. Like admitted-to-the-hospital-and-given-multiple-blood-transfusions sick. Like the-doctors-treating-me-had-never-seen-a-number-that-high sick. The lowest I have reached, in June, was 26,857. My last result is so high, the lab can't even quantify it, it simply reads a vague  >10,000,000.

Yes...greater than 10 million.  I refresh the lab results web page twice in disbelief. I count the zeroes a few times to be sure. It all feels simultaneously ridiculous and teetering-on-the-edge-of-hospital-admission serious.

In September, I was fighting a cough and cold and congestion, for weeks. This led to a sinus infection, pneumonia, and multiple rounds of steroids and antibiotics. Ultimately the right combination of meds and my less-than-efficient immune system won the battle.

As my doctor made clear to me at my last appointment, the war continues.

The next battle is upon me. Congestion, cough, sinus pain. Trying to nip this one in the bud, I head to urgent care, get diagnosed with a sinus infection and bronchitis. Ironically, I feel an eerie victory in this:
a) I don't have pneumonia. 
b) Those two things are completely treatable. 
I am physically ill, but it's not insurmountable. It's another battle I am set to win. I hope.

Honestly, I am weary of the relentless battles. I am struggling to retain the optimistic perspective I need. Dr Wali, in his "war goes on" speech, reminded me that this war is lifelong, it's a balancing act that I will be responsible for forever. There's no vacations, no time off for good behavior or even days that half-ass-effort will get me by. And the rules will keep changing, tolerances will adjust, resistances will build up, drugs will have side effects, and viruses will return.

Viruses, like parvo, the one that's snowballing in my body now. No one knows how long it will take for the virus' red-blood-cell-destroying power to start affecting my day-to-day life, or even if it already has. Is that why a run-of-the-mill cough turned into pneumonia a month ago? Is that why I'm struggling to fend off the runny nose my son had for two days two weeks ago that, for me, has turned into a sinus infection with bronchitis?

I'm going soon for in-hospital IVIG treatment, a kind of immunoglobulin cocktail that doesn't fight parvo virus directly, but is believed to generally boost your immune system so that it can stand up to the virus. Because this situation is so rare, it's technically not FDA approved, but has a track record(obviously a short one) of improving the patient's ability to fight the virus. None of this translates into that warm, fuzzy feeling that feels so elusive.

And it takes about a month to see the potential effects of IVIG treatment.
Long term strategic planning...a foundation for victory.

I do my best to explain things lightly and in lay terms to my daughter. She laughs at the overwhelmingly present theme of war.

Outwardly, I laugh with her. I hear myself, boasting like Bugs Bunny, assuring her that I am going to win this war.

Inwardly, I am confident AND nervous. I am grateful AND skeptical. I am eager AND scared.