Unfamiliar Territory

I saw my transplant surgeon last month for a routine check up. It was boring. The only news to report was that nothing major was wrong.

"She's had a normal summer!'" Nikki, sounding triumphant, announced my boring news to Dr Wali when he walked in. He looked over lab work, ordered a biopsy, and checked in with the resident on what he thought about my status. The resident, new to me and transplant medicine, was most concerned about my Parvo virus titer, which most recently was 15.000. He suggests treating it immediately with IVIG and hospital admission.

I stifle my laughter. I don't want to insult him. My titer has been upwards of 130 million. 15,000, although much higher than normal(0) seem like the best results ever and I'd like to do nothing about this number.  Dr Wali  falls between our two opinions and decides to  keep an eye on it, retesting in a month and taking action based on the trend as opposed to the actual titer.

We go over the nook-and-cranny details, the recurring skin issues and pesky infections, the underlying need to remain on prophylactic antibiotics, the tangible side effects of the medications I'm taking. He makes fun of me for asking about the tenderness in my transplanted kidney, assuring me I've created it in my head..

I leave the hospital quietly, listening to the echo of my steps on the long, familiar corridors,  smiling, but a little disappointed. I'm at a loss. Some ridiculous part of me misses the challenge of having a battle to fight. I can not be a valiant, conquering hero without an ominous foe to defeat.

How will I define myself now?
The freedom is daunting.

Show Your Scars Tour

I spent less than 48 hours in Vegas.
I didn't have a sip of alcohol.
I didn't drop a penny in a slot
Sleep was scarce.
Food was not.

Maybe out of desperation, I made the last-minute decision to head to Las Vegas for the annual Show Your Scars Tour(a weekend long event bringing together transplant friends, caregivers, donors and supporters of organ transplant). I needed to feel "not alone." I scrambled, reached out for help, hijacked my cousin's car and house, and went for it. I was going to Vegas; I was ALL IN.

I arrived late and joined the rest of the "Transplant Team" in the afternoon. I had trouble finding the group and after a failed attempt at one location and frustrating lack of confirmed details, I scoped out the second possible location, anxiously crashing the party as the remaining few finished lunch. I didn't know what to expect, and kept reminding myself that I was a big girl and would enjoy the weekend no matter what.  My ill-timed arrival and I were welcomed with smiles immediately.

Around the table, Cassie, Phil, Shelley, Mike and Mimi chatted me up, warm and inviting. I felt at ease. We didn't discuss a lot of transplant details, just some minor stuff to identify each other. Then we met more scarred friends for outside fun on the biggest ferris wheel ever - I think each pod held up to 30 people.

We spent 30 minutes circling the blue Vegas sky, taking pictures, getting to know each other and sharing hugs. Instant bonding. A pod full of giggling girls and a couple of boys who laughed along with us. I think more group selfies were taken than skyline shots.

Dinner a couple of hours later...even more warm, open and gracious folks. We smiled and laughed. I listened to some transplant histories. I shared some of mine. No one, not even Shelley, whose graft has failed and she's back on the waiting list, told a sad story. Every person at our tables was present and happy to be.

Aimee got emotional giving a toast. Mike teased Jake about his never-ending Facebook posts. Janet hugged new arrivals with genuine warmth. Darlene shed happy tears. Cassie shook her head, remembering how far Phil had come. Late-comers got a "Norm-from-Cheers" greeting. Paul subtlety got in one-liners you'd miss if you weren't paying attention. Lisa rolled her eyes playfully when her fake Happy Birthday dessert arrived. Mimi couldn't keep her contagious smile in check. I showed off my Scars-Are-Sexy shoes. Everybody posted pics on Facebook.

The rest of the evening and the next morning...the same. Smiles, Laughter. Appreciation. Repeat.

Too quickly, it was time for good-bye. A looong good-bye, an emotional good-bye. We hovered in the Peppermill parking lot for over an hour. I was in tears, and I wasn't alone.

I spent the flight back split between trying to catch up on sleep and trying to figure out why the Show Your Scars Tour was so meaningful to me. I've never been surrounded by a group of people affected deeply by something so many take for granted and no one was sad or regretful or angry or bitter. No one felt cheated. We ate and we joked and we laughed and we ate some more.

Looking back at the pics from the weekend, I'm still smiling, admiring each of us in our green Show-Your-Scar t-shirts. I'm so grateful for this time, to sit among people I admire and who don't need me to lead and be a shining example for the chronically ill.  I'm proud to look reflectively and introspectively at their faces, knowing we share an unspoken appreciation that eludes so many. We are people familiar with loss and strength and understand the power of living in the moment. 

Thank you for this moment, new and forever friends!

Celebrating My 2 Year Transplant-iversary

The Commercial Appeal, Aug 25, 2014

Mary Rice...An online transplant buddy posted  this quick clip about Mary Rice. I was overwhelmed with emotion. I felt the moisture on my face as I teared up, the glare from the monitor warming my now flush cheeks. I wiped them away, puzzled at myself.

Mary Rice was 94 years old when she died. She was diagnosed with insulin-dependent diabetes at age 9 in 1929, only 6 years after the first human was treated with insulin. She lived for 85 years with a debilitating chronic illness. 

85 years? I am amazed, impressed, inspired.

I lived for 22 years with diabetes.
85 years was incomprehensible. Until now.

Not just impressed, I am grateful.
I am grateful to know she existed, she persevered, she triumphed.
I am grateful that she's real.
That she's not a pipe dream that doctors allude to when you ask, desperate for reassurance, "So, what's my life expectancy?"

Other transplant recipients commented on Mary's inspiring life. Amid comments from other members, there was one that struck me. Another kidney pancreas recipient, a woman whose name I didn't recognize, praised Mary Rice as an inspiration, but said she herself didn't feel like one.

This also festered in my brain as I settled back in the chair. Now the monitor was a spotlight, forcing my inner devil's advocate to prove her wrong.

Internally, I echoed her thoughts. I felt them.

Externally, I disputed her claim, spouting off reasons, monologuing with my hands into the light. You, self-doubting commenter, are inspirational.

You're strong
and resilient
and resourceful
and motivated
and alive
and an example for every person battling chronic illness.

None of these reasons take my knowing the woman at all. I just know, because I've done what she has, and I'm surviving. And tomorrow brings more surviving.  There will never be a day where we can coast and just know that everything will be fine.  There will always be a pending blood test, an unexpected tenderness in your abdomen, a cold sweat when you hear that your co-worker has the flu, an exhilarating annual checkup when everything(YES, EVERYTHING) comes back within normal range.

And these types of battles are not for the weak.
These types of battles can even break the strong.
That's why we are an inspiration.

We are here and alive and looking forward to tomorrow and whatever it may bring.
We are an inspiration to everyone who has suffered diabetes and kidney failure, and to people with chronic disease of all kinds.

By our survival alone.

As of today: (http://optn.transplant.hrsa.gov/)

123,855 people need a life-saving organ transplant. Every day this number grows.

Becoming an organ donor can save up to 8 lives.
Becoming a voice, sharing your story,  can affect infinite amounts of people. Or maybe just one scared, sick woman who can't imagine being a survivor. 

I want every person with diabetes and end stage renal disease to know I, a scared, sick woman who couldn't imagine being a survivor, made it.
That they are not forging out alone into an unknown world where no one has been before.
There are survivors, there are success stories, there is inspiration.
There is me. 

So, if you're a transplant survivor and you stumble or doubt or wonder if the next challenge on the horizon is the one that's too much for you, don't forget who you are, where you've been and what it all means.

                      My name is Michelle Buscema.
Today, October 4, 2014, is my 2 year transplant-iversary. 
                      This is how I’m celebrating.
             As of today: 17,956 page views to my blog.
                                    Join me.
                 Speak up. Share. Be the inspiration.

Ob-la-di, Ob-la-da

Lately, I haven't had much to say. Post-transplant life was not turning out like I expected and its bumps and dips were leaving a bad taste in my mouth. Life went on.

Last week, a traumatic post-transplant dip/valley/planet-sized crater happened. I went from feeling "pretty ok" to barely capable of sitting up or speaking, in gross amounts of pain and bone-chillingly cold in a few hours.

It turns out I had a kidney infection, which quickly progressed to sepsis and took over my body. I was admitted, my fever subsided within a day, but the nausea, vomiting, pain, and general inability to function persisted a few days, until I got transferred from the local hospital to my "transplant team" hospital.

At the local hospital, my immunosuppressant level was overlooked when they treated my new infections with antibiotics. The local doctors,not well-versed in transplant medicine, conitnued my immunosuppressant medication, and the level skyrocketed to beyond toxic levels, essentially overdosing me on prograf. (For fellow transplant folks, my prograf level was 54, and ) I felt physically the worst I have felt in my life. My head was splitting, I couldn’t stand light or noise, my body ached, I was nauseated and exhausted, unable to sleep and desperately dependent upon IV-infused dialudid(synthesized morphine that's 7.5 times more potent than morphine) that never seemed to be enough or on time.

I was given activated charcoal to drink to de-poison my system, but, like the sips of water I hadn't been able to keep down for the previous two days, the charcoal didn't stay down. As bad as it tasted going down, it was further painful and horrible tasting having it all come back up--only it took all day to get rid of it rather than the half hour it took to drink it. The doctors ultimately decided the only option was to flush me “manually” with saline and lasix.

Those days of detoxing are really a gray area in my memory.  Everything was too bright and too loud, a jarbled mess of pain and vomiting and sweating and dilaudid. There's big gaps of missing time and endless hours of no sleep. I lost control of my body and its functions, getting out of bed was traumatic and dizzying, staying in it was endless achiness and repeated hallucinating.

After a couple painstaking days of forced detox, my body began to regain its ability to function. I could carry on somewhat meaningful conversations and keep my head outside the covers. My dilaudid demands slowed and my hallucinations stopped. I enjoyed a heavenly breakfast on my day of discharge; chicken broth and jello never tasted so good. In fact, the last 6 hours of my hospital stay felt like as quick a turn in the positive direction as the original onset was in the negative.
 

So, right now, in my post-valley peak, I am grateful and renewed and amazed and delighted at my good health, the world and my blessed presence in it. The sun is brighter  than when I went in. Early mornings are sweeter and late nights are savory-er. I don’t want this appreciation to go away.

As before, life goes on.
It just tastes better now.

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.

Catching Up

The past month has been a struggle. 

My post-transplant immune system has led me to the ER three times, gotten me admitted twice and pushed me to spend a total of 13 days in the hospital.

It all started with fever, chills and migraines that wouldn't quit. First trip to the ER determined a surprise UTI as the cause. Then followed antibiotics and brief improvement.

Fast forward two weeks and exact same symptoms returned, only worse. I was admitted and treated for the now stronger UTI, sepsis(which had come from UTI) and the flu. Five days in the hospital and a week of IV delivered antibiotics at home brought relief.

Round 3 came a week after antibiotic treatment ended, and it was the worst yet. All the same symptoms, except even worse and additional complication of intense pain in my transplanted kidney and severe dehydration. My blood pressure was dropping to dangerous levels because of the sepsis and dehydration. 

I realized I was too sick to drive. 
My head was killing me.
I was dizzy and off balance. 

I got a ride to my doctor's appointment. When I arrived, I was worsening. According to the lab tech, when I tried to stand up, I was doing "the dance." I heard her yell for help and felt her supporting all my weight. I couldn't keep myself up anymore.

They took my blood pressure: 59/43. My nurse told me I was going to be admitted. I responded with something I've never said before: ”I want to be admitted." I knew I was sick.

The next few days were whirlwind-y. I felt badly, but no one knew what was wrong exactly. i was quarantined for the first 6 days and only saw 3 people each day: 2 nurses and the doctor, all masked and gowned for everyone's safety.

Tests revealed I had the flu and a UTI and sepsis and a kidney infection and pneumonia. My transplant team concluded that the original UTI I got a month ago was never fully eradicated, got stronger and had brought on the kidney infection and sepsis. The kidney infection had spread past my transplanted kidney and into my native kidney. They were running cultures and trying to treat all this, but my headaches weren't improving and my fevers didn't stop. I was receiving a wide array of narcotics, antibiotics and rest-inducing medicine...my head was muddled.

The transplant team acknowledged they were concerned and didn't have the answers or a treatment plan. Hearing this while at such a low point physically was the most disturbing message I've received from a doctor yet. 

Infectious Disease was called in to help. Their team tried multiple different antibiotics to see which one my body responded to positively. After some painstaking trials, they found one that was effective at fighting the unique type of pneumonia I had. A CT scan revealed that the previously unknown cause of my headaches was a very aggressive sinus infection. No one ever determined the cause of the fevers that remained long after they should have disappeared, but ultimately they also stopped. My body, after having been through so much physical trauma and medication, was so eager to simply rest.

Eight days in the hospital and I was cleared. Pneumonia was the toughest and scariest one. It took a while for them to find the right weapon(antibiotic) to use in battle. On the morning of my release, Dr Piper pointed at the monitor and told me how beautiful my lungs were. I laughed, grateful to be able to after the preceding week.

I am home now, and again on home-based IV antibiotics. I don't mind as much this time around; I really just want to be sure every possible bug/bacteria/threat is gone. I have been cleared of pneumonia and sepsis. The antibiotics are still chipping away at the kidney infection and sinus infection. I am still recovering from the illnesses and the treatment.

My head spins thinking about it all. I'm trying to be safe and rest, take care of myself. The hectic and stressful past and the unpredictable future haunts me when I lay down to rest, trying to take care of myself, trying to recover physically and mentally.

I'm tired and scared and alive and grateful.

 

And envious.

Envious of my body, my flawed and burdened body, 

resilient in the face of every challenge.

My exhausted and tattered body, 

with its telltale scars, battle wounds, wrinkles and stretch marks. 

My perfectly imperfect body, 

and its miraculous, against-all-odds, what-doesn't-kill-me-makes-me-stronger, never-say-die indomitable spirit. 

I can't wait for my mind to catch up.