Life Is A Battlefield

It started with a surprise kidney infection in December that just held on. Three hospital stays, a bout with sepsis, a prolonged pneumonia scare and three months later, the kidney infection was still holding on. And during the battle to defeat this intruder, my body was getting attacked on all different fronts. A surprise infection here, a cough there, skin rashes and antibiotic side effects. I was getting weighed down.

While new infections were parading through, my parvo virus number was again on the rise...it grew exponentially to a simple >100,000,000. That's a really big army for my suppressed immune system to put down on its own. I felt like a target for infection and there are no Allied Forces to call on to back up my troops.

Dr Wali tried to make light of the situation, calling me "the most unique patient I've had in 5 years." I smiled, trying to take pride in this...I always wanted to be special...He explained that the multiple rejections I had early post-transplant(more specifically the treatment of them) were showing long term effects on my body. My immune system has been seriously disabled.

Ugh. Not the kind of special I had in mind.

I try to explain the situation metaphorically to myself like it's a war, a battlefield, but each time it requires that David defeat multiple Goliaths to make it through each battle and then do it all again the next day. Like "Groundhog Day," only with exhaustion and illness. In my head, I got stuck and sad and accepting and defeated.

And quiet. Really quiet. I didn't want to share this, to taint anyone's perspective on whether transplant was a good idea for them or to show my shield of strength was cracking or admit that I was scared.

But I was scared. I was tired. I stopped exercising. I slept more but didn't feel rested. I juggled hospital visits for treatment and multiple doctor appointments. I tried to research how other people dealt with this, but I couldn't find anyone in a similar-enough situation,

I haven't found any answers and last week it dawned on me...it doesn't matter how other people handle it. The only things that matter are the steps I'm taking right now.

That was a rude awakening, because I was only taking steps in the wrong direction.

A transplanted kidney lasts an average of 10-15 years.
A transplanted pancreas lasts an average of 10 years.
Time is ticking and I can't let any more of it go to waste with sadness and fear.

I started with an excruciating mile and a half run/walk.
The next day I moved back into my strength routine.
I changed my perspective. Period.

At the end of each day, I want to be proud of myself.
At the start, I will focus on what I've got and not what I'm not.

It's very simple.
Inspiring.
And that's who I'm choosing to be.

Character Building

November 2013................March 2014

Transplant, with all of its endless possibilities, is a treatment, not a cure. And along with treatment come side effects.

Anti-rejection medication side effects are taking a toll on my skin and hair. I'm disappointed that this affects me so deeply. I've received the gift of second chance at life. My transplants are a success...why do thinning hair and scarred skin make me cringe in the mirror?

My surgery scars are the least concerning to me. i know where they are, and they're not pretty, but I've accepted them. I can feel the jagged trail embedded in my abdomen  from transplant, the bullet-like wounds from dialysis catheters and the hodge-podge from hemo and IV catheters at my neck. I carry them with pride. I own them. I earned them. I remember the trauma involved with each one, the fear and the strength it took to heal physically and emotionally from them.

Because of immunosuppresant drugs, now my skin scars at the slightest brush. Three months ago, my son excitedly tried to give me a high five and missed. His pinky nail grazed my arm. I thought nothing of it. There's  a  permanent inch-long tattoo on my forearm. 

No actual breaking of skin is required. I had tape on my cheek for 2 days after sinus surgery 2 months ago. My skin did not tear when the tape was removed. The little irritation has become a kidney bean-looking stamp on my cheek bone.

I started wearing weights to strengthen my legs and arms, but I had to stop. My right shin is now adorned with permanent proof of where the weight met in the middle, like a treasure map with no treasure.

Tiny nicks on my arms expand to become permanent blemishes without the cool story to go with them. My legs look like a 3D connect-the-dots game.

My hair is now devastatingly thin. I read that post-transplant hair-thinning often occurs a few months after surgery. It's been a year and a half. I tried to downplay its importance for a while; that didn't work. My hair was such a part of me. I struggled with controlling it as a child, attacked it as a teen and finally settled into acceptance, even appreciation, as an adult. 

It used to be so thick. When I sat down, it stayed up. It had a mind of its own. I've been called everything from Buckwheat to Darlene Connor to Shirley Temple to Carla Tortelli. I've been noticing my once overly thick, unruly mop of curls thinning since transplant, but in the past 4 months the process has sped up dramatically. Showering means woefully seeing what looks like years of hair growth literally clog up the drain. Brushing makes my eyes tear, not from pain, but from seeing the aftermath on the brush, sink and floor. I dread meeting my eyes in the mirror and assessing the surviving remnants of my hair.

A few days ago, a friend asked why I cut my hair, because she loved how it looked last year. Before answering, I exhaled long and slow, doing my best to retain my composure despite the unintentional blow. "Change can be good," I smiled back at her. I didn't tell her my hair hasn't been cut in the past year. I didn't tell her it actually looked thicker that day than usual. i didn't tell her how much her question stung, not because it was intentional, but because it was honest. I'm aware this issue is not just my perception.

My doctor told me I could try Rogaine. Try? He didn't seem convinced its going to work. Reading more about it shows a 64% success rate, but tangible results(if any) wont be apparent for 6 months. And... Shedding and increased thinning should occur through month 3.

Ouch. I'm struggling with this situation. I want to be stronger. I want to know that the only important thing is that my grafts are ok, that my tattered skin and sparse hair are just collateral damage en route to improved health.

I'm just not there yet. I haven't accepted this loss. I'm still frustrated and disappointed and vain and mourning. I still look in the mirror, turning to different angles, hoping there's something(besides hair) that I'm missing. I turn left and right. Up close and far away. I search desperately for a positive sign. Every morning, my paling scalp peeks through the thin, wispy strands of what's left. Ugh.

"Get used to it," I whisper to the forlorn woman staring back at me. "Loss builds character." I smile, aware that she isn't buying it. Despite her lips curling at the sides and her eyebrows arching at the irony, her eyes are heavy. Looking at her brings me down. I'm disappointed in her. I know she's stronger than this.