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.