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.

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.

Oct 4, 2013 - Happy Transplant-iversary!

Whew! It's been a year, 365 days, a full trip around the sun since my kidney-pancreas transplant and what a difference a year makes. The physical improvements are obvious, even to me. The emotional changes more subtle, but way more important.

Not to mislead anyone, I have a lot more work to do. And a lot more fears to overcome, challenges to conquer, doubts to silence, experiences to experience, and life to live.

Life to live...That's the big one. Accepting that my life is mine to live, and to live indefinitely. I never wondered before what retirement would be like. I didn't concern myself with how I would afford medication in my 70's and 80's. I couldn't picture seeing my daughter graduate from college or my son learn to drive. I didn't wonder what it would be like to be old and frail. i decided a long time ago I wouldn't be around that long. With certainty. Undoubtedly. Not a question. 

 

I was being realistic, and this was my reality. 

Was.

Oct 4, 2012 started my new reality. A new reality with new fears, new risks, unpredictable challenges and who knows what else? A new reality where the future is uncertain, uncertain in the best way possible.

It's my first trip around the sun in this new reality. I'm still adjusting. I still have "AHA!" moments. It's going to take some time. But, lucky for me, it looks like I've got as much of it as anybody else.

I am so grateful to the people who have supported me through my physical weaknesses, emotional shortcomings and perspective adjusting. I am grateful to the people who saw past my weaknesses and pushed me to discover my strength. I am grateful to the people who focused on my determination and not my raging steroid-induced emotions. I am grateful to the people who helped when I asked, and especially to those who stepped up when I was too stubborn to ask. I am grateful to the people whose support and presence in my life shows me I will always be more of an asset than a burden.

I am grateful to my readers and virtual supporters. Thank you for following and giving your time to share my journey. Thank you for the support, encouragement and inspiration I feel every time you comment and share. You'd be surprised how meaningful a comment can be, from a stranger, a relative, someone you thought wouldn't even remember you, a close friend, a new "transplant buddy."

I am grateful to my unknown donor and the family he left behind. I know today while I am reflecting fondly on the past year, they are likely mourning their loss. I want them to know I will never forget, under-appreciate or waste this gift.

I am grateful and eternally indebted to my dad and my children for the things they've done without even realizing. They strapped themselves in for the entire ride, struggled along with me, shared in my fear and my excitement, provided strength when I felt weak and never let me forget how important I am to them. 

 
So, Happy Transplant-iversary to me. As I blow out the candles on my virtual Transplant-iversary cake, I'm wishing for more of what you've already given me....your support, comments, smiles, encouragement, inspiration, presence. I'm honored that you've chosen me to give it to.

Millie's Sweet Song.

This week I attend a volunteer training for WRTC(Washington Regional Transplant Community), my  region's organ procurement organization. They are training people to spread the word about organ donation. My nurse referred me to take part as a member of this team. I am eager to go, share my story, and pay forward some of what I've received.

I'm not exactly sure what I expect, but what I get is another memorable experience. Arriving, I am greeted with smiling faces and offered a pleasant buffet meal. I choose to sit at a table with two smiling, healthy-looking women who had been there since before I arrived. The woman to my right welcomes me warmly and I find myself talking comfortably with them and wearing their contagious smiles.

Why not be happy? The woman across from me received a kidney a few years ago and is doing great. Hanitra, right next to me, donated a kidney to her mom a few years ago. She says her mom recovered from kidney transplant surgery faster than she herself recovered from kidney donation surgery.

Now it's  my turn to be eager. I had never really considered the experience of the living donor. I have thought plenty on the lives of the donor family, but never a living donor. She shares with me the difficulties she faced, and all the while, steadfast in her statement that she would do it again if she could.

We finish dinner quickly and move into another room for the presentation. Inside, I find myself between Hanitra and a gentle-faced gray-haired woman. She has a soft smile on her lips, she is poised and gracious, and her eyes have a beautiful sadness I am drawn to.

Millie's name tag reads that she is a Donor Spouse. My heart sinks reading this; I could feel her grief and strength and positivity all at the same time. She smiles as she speaks about her deceased husband of 45 years. She explains getting the call from organ procurement and hearing that her husband's organs, eyes and tissue could be used to live on in and improve the lives of 40 people.

Millie quickly stops talking and regains the small amount of composure that had started to slip. She smirks and lets out that she feels like she's so moved she's on the verge of tears the whole evening. We both straighten up...the presentation is about to start.

Now its my turn to struggle to retain my composure. I feel my eyes well up, and I'm blinking to keep them from overflowing. I am overwhelmed with gratitude and empathy for Millie, the Donor Spouse.

I wrote a letter to my donor's family last December, and I haven't heard back yet. But Millie is right here, next to me. Breathing the same air as me. Volunteering right along side me. Grieving over losing her best friend a year and a half ago. Taking in the shared information with interest. Still giving after having already given so much.

I can't hold in my tears. My shoulders shake a little for a minute, but I am rescued by the start of the presentation. I wipe my face, munch on my cookie and try to pay attention; WRTC has a great team and they designed an impressive and informative night. Millie's strength remains on my mind throughout.

People tell me a lot that I am strong, and I obviously try to be...

But I am humbled by the superpowers of the gentle and vulnerable Millie the Donor Spouse at the table with me. Her brave, sad eyes smile back at me as we say goodnight, and we hope we'll be assigned together at a future event. I play our brief embrace, including the soft, sweet music in the background, over and over in my head.

I may never get the chance to see my donor's family or even Millie again...I wish my donor's family the strength and peace that Millie exudes. I know that dealing with my turbulent medical past has been tough on my own family...I wish Millie's strength and peace for them as well. Humming my new theme song, I even wish it for me.

Adjusting My Sails

Last week while I was busy concerning myself with the lack of medical news in my life, my inner voice was telling me to knock it off and just appreciate the calm.

I should have listened.

Thursday night my period starts. Ho-hum.

Really early Friday morning, like 2 am, I realize ridiculous and alarming amounts of blood are leaving my body. And it won't stop. I wait a couple hours, believing it will subside, but it only gets worse. I debate over how crucial this is, but ultimately decide it warrants a call to the on-call transplant coordinator.

She calls back quickly, and I explain the situation. She speaks calmly, but definitively.

"You need to go to the Emergency Room now. Do you have someone to drive you? If not, call an ambulance. You can not drive there."

 "Why not?"

"You're going to the ER to be sure you're not bleeding to death. You can't drive yourself."

Bleed to death? Whatever…but her words still haunt me getting into the car. I'm trying to maintain her calm and definitive nature as we rush to the hospital. I am starting to feel really tired and a little dizzy. I keep nodding off on the ride there.

Bright lights in the ER lobby wake me up quickly. I am assigned a bed almost immediately, no triage. A nurse asks basic history questions and I am cranky and impatient. I'm losing faith in the nurse, feeling like she's not really present when she asks me why I'm taking immunosuppressant drugs after I've told her I had a kidney/pancreas transplant 10 months ago.

A calm, accommodating doctor lets me know she's going to be drawing blood and running tests. I am adamant that they page my transplant team, as the coordinator instructed me to do. Despite her reassurance that she'll contact them once test results come back and she's done an exam, I don't feel comfortable with the soft-spoken ER doctor I don't know.  

She asks me if I'm light-headed, and I admit I am but I'm not sure if its psychosomatic, the fact that its 5am and I've been awake for 24 hours, or the loss of blood. We discuss medications some more and she suspects an interaction of ciproflaxin and coumadin are the cause of the excessive bleeding.

My faith in her is growing.

She completes the exam and test results come back quickly. I am healthy on paper, good H&H, white blood cell count and red blood cell count despite the blood loss. Nothing is out of line. They've ruled out any other reasons for the excessive blood loss. She has discussed the issue with Dr Piper and they've concluded I should stop taking both the cipro and the coumadin until Monday at least.

I really trust her by the time she says I get to go home.

Riding home, exhausted physically from no sleep and emotionally from the mini roller coaster ride the evening provided, I laugh at myself, thinking how silly my over-reaction was, and I imagine telling my daughter about today's late night/early morning adventure. 

My daughter in mind, I immediately realize there was no over-reacting. If this had happened to her, I wouldn't have waited a couple hours "just to see." I wouldn't have called for advice. I wouldn't have "whatever-ed" the possibility of bleeding to death. I would have rushed her in to be safe.

Gulp. I understand transplant is not only re-shaping my body, but my mind as well. Like all moms, it has always been instinctive for me to take care of my kids and back-burner my own health. Transplantees, even moms, don't have that option. I'm still new at this, and it's not as easy as it sounds.

                                         

I am adjusting my priorities. 

I am not de-prioritizing my kids. 

I am just re-prioritizing me.

Unsettling Calm

I havent posted anything for a while…a combination of being busy, internet issues, not feeling great(but not feeling sick), and not having any news…

Although not exciting, here's the updates I do have:

1. I have a hacking cough.  It's been here a while, and its painstakingly slow at diminishing. But I've had everything checked, a CT scan, tons of blood work, routine and exceptional…and, guess what? I have a hacking cough that is slow to go away. I'm taking some steroids and antibiotics, and I am trying to be patient.  A nagging cough is not detremental to healthy people, and that's who I'm choosing to be.

2. On the especially healthy note, my Parvo virus number and CMV number are drastically lower, and both are almost in normal healthy range, which Dr Wali calls negative results(we have a difference of opinion on this) :)

3. I'm still not taking any Cellcept(one of the 2 immunosuppresant drugs transplant patients always take) to give my immune system a fighting chance to defeat parvo and CMV.  There was lots of concern about opening up the door for rejection, but none of it has been founded. Yay for me and my immune system!

Literally, this is all I've got. I have to pause saying this as it brings up a brief and crazy and ironic and twisted sense of disappointment at not having more exciting and pressing news to share, like I'm letting people down by not having another medical challenge to rise above right now.

My 10 month transplantiversary was August 4. My complications and I had a good 10 month run of playing tit-for-tat.  It was close sometimes, we were neck and neck, and I spent plenty of nail-biting nights wondering about outcomes, but I was ultimately victorious.

So, I'm taking a deep breath, reflecting on my journey, grateful for my success and growth. I appreciate the lull, the valley, this precarious, tenacious, fickle unsettling calm.

Exhaling, I know my boat will be rocked sometime in the future, but I wont let it tip;
I will continue to choose victory.

Duh!

I leave the hospital Sunday evening feeling relieved that it seems like we've addressed the potential risk of CMV head on and acted quickly to keep it from getting worse.

I am home and essentially relieved of major symptoms.  I haven't regained all my energy back and there's a complete void in the exercise category of my life.  I am optimistic for continued progress.

I decide on Tuesday to enjoy some sun and splash around in the pool with the kids.  Its late afternoon by the time we get there and we're only in the sun for an hour. My daughter notices first that I have a bunch of brown spots on my calves and bottom of my feet.  I am alarmed and try to wipe off what looks like mud…they don't wash off. They're freckles.

Freckles? Not a couple…we count at least 20 and there were none an hour ago. I'm alarmed and doing my best not to freak out about skin cancer possibilities.

As soon as I'm home, I look up skin cancer and transplant patients. A quick scan lets me know that the immunosuppressants I am taking will increase by skin cancer risk by eight times. Ouch! But that skin cancers, if caught early, are the easiest to treat and have a high rate of success. Yay! I consult my nurse, who tells me I'll need to take precautions, like always wear at lest 30SPF sunscreen, wear a wide brimmed hat, and get a dermatologist to regularly follow up.

I have never worn sunscreen in my life. My skin, although relatively fair, does not burn often and gets olive in the summer.  I spent most of my childhood and plenty of my adult life enjoying the sun. I look forward to being enveloped in the warm and bright sun, even the stinging tingle as the sun soaks up the moisture from the water, leaving your skin dry and desperate for the cool relief of jumping back in the pool. I love the feeling of security when you burst out of an air conditioned building, escaping into the sun's embrace. Being drawn to the sun feels instinctive to me, like a baby instinctively craving swaddling warmth.

I am aware of the illogical priority I'm placing on this.

I have dealt with restrictions of a much grander scale than this one. Diabetes means sugar must be all but removed from your food options. Insulin dependent diabetes means you must administer insulin shots every time you eat. Heart disease means detailed restructuring of your diet, exercise and lifestyle. Kidney disease means you are limited to 50 oz or less of any liquid each day. Hemodialysis means you must be in lockdown in a vinyl recliner at the dialysis center for 4 hours three days a week.  Peritoneal dialysis means you must be tethered to a machine every night and need to go through a multi-step medical procedure to walk outside a twenty foot radius.  Organ transplant means your survival is dependent upon your dependence on immunosuppressants and antibiotics. Parvo and CMV mean forever pursuing an elusive balance between drugs that can protect my organs and drugs that can destroy them.

But now we're talking about depriving me of a lifelong, simple, human pleasure.

I feel disappointed, cheated, bamboozled even.

I try to explain it to my daughter.  I struggle to find the right words to justify my visceral response. She is confused and quickly, but unintentionally, realigns my priorities with a simple question:

"But your organs are healthy, right?"

Stubborn Purple Resolve

We are set to leave California to go home from vacation on Thursday. The week has been up and down, spending time with my dad, lots of people to see, fun to be had, and as much rest as possible in between it all. A few days of continued digestive issues and signs of a budding infection haunt me as we enjoy the end of the trip.

I receive an email from my coordinator as we're prepping to head to the airport. Nikki tells me Dr Wali wants me to be admitted the following day to treat the CMV that has been causing the troublesome symptoms. I am unprepared for this, and I need to scramble to get my kids' covered, free my responsibilities for the weekend and get to the hospital within hours of arriving back on the east coast.

It hasn't been easy, I receive help from others, and I'm sure I've let a few people down, but I make it to the hospital by 10:15 as had been agreed upon with my nurse. Unfortunately, I get informed that no beds are available. Frustrated and jet-lagged, I sleep on a hospital couch waiting indefinitely. A call at 1:30 jolts me awake, a woman asking where I am because my bed is ready. I get admitted quickly, but end up waiting until 6pm for doctors orders and medicine to materialize.

The techs and nurses are accommodating and offer me a pitcher of ice water and the standard hospital gown. I gratefully accept the water and politely refuse the gown, stubbornly keeping on the purple polo shirt I arrived in.  I'm determined to not be sick, so I'm not even going to take the risk of appearing sick.

I'm set up on IV Cytovene. I've never used this drug before and I'm too tired to look it up when it starts. I sleep through the night and into the late morning when the doctors are rounding. Dr Wali tells me CMV is "a nasty virus," and that it needs to be contained. My recent CMV titer is 50,000 and needs to be less than 200 to be considered contained.


He has ordered that I stop taking Cellcept, one of the immunosuppressants I've been required to take since transplant(It is supposed to be a lifelong necessary medication). This is alarming to me and I ask about the increased risk of rejection without half my immunosuppressant meds. Dr Wali says that it's an inherent risk we have to take to defeat CMV.

They're also taking some samples and tests that will need to culture to confirm CMV as the cause of my recent digestive issues.  He says we'll have more information in 24-48 hours.

I am appreciative of the proactive response and treatment, but also realize the seriousness that must be implied by acting so quickly and decisively. Discontinuing Cellcept? Definitely a risky, but apparently necessary, step to take.

My purple polo shirt and I refuse to be sick. We'll stop the immunosuppressant and play the precarious guess-and-check game of balancing the risk of rejection against the existence of infection. I know my immune system needs a boost to fight off these opportunistic infections, but I've grown especially attached to my functioning kidney and pancreas, and I don't want to tempt rejection. 

And that's exactly what we're doing. 
And the balancing act is getting tougher. 
And the stakes are getting higher.

After the team leaves, I realize I've forgotten to ask about the CMV medicine, Cytovene, i look it up and find that it is typically given by IV for a couple weeks...Yuck! My nurse Nikki had told me I'd probably be in the hospital for a couple days. I'm hoping that answer will come with my test results, so the question will be only temporary.


I reassure myself that this whole situation is temporary, and this is not MY real life. The particulars of this temporary situation are means to an end:

• I temporarily need infusion treatments to fight off the "nasty" CMV.
• i temporarily need an IV in my arm to keep  hydrated.
• I've temporarily got bandages from blood draws.
• I'm temporarily confined to the hospital bed.
• If Cytovene IV treatment takes a couple weeks, it will also be temporary means to an end.

The tech comes in to see how I'm feeling and to again offer me the hospital gown.

I look in the mirror and acknowledge that I am feeling....ok.
"No, thank you." I smile appreciatively.

My purple polo shirt and I refuse to be sick.

Spinning

The past couple weeks have been challenging. Real life, non-medical stuff, has been stressful, and I have been feeling an underlying "something's not right" feeling that I've tried to ignore, but haven't been able to shake.

I get routine lab work drawn last week, and they come back with a white blood cell count of 1.8, which roughly translates to "you're a magnet for infections and now have no ability to fight them...Get a neupogen shot NOW." 


Neupogen is a shot I've been given a few times for low WBC count. It stimulates bone marrow to quickly produce more white blood cells to raise dangerously low counts up very quickly. For me, this causes intense bone pain for about 2 days following the injection, the kind of pain that Percocet, switching positions, laying down, massage or heat/cold can't do anything to subside. 

I embrace the shot, despite the pending pain, understanding its necessity. I receive the shot on Wednesday, less than 24 hours before boarding a plane for a six hour flight with my kids to visit my father. 

Ugh. Relatively intolerable pain, inability to take recommended pain meds, cramped space on a plane, and an anxious six-year-old with a monitor that doesn't work. It is a very trying day, and I am so grateful when the bone pain diminishes earlier than I expect on Friday morning instead of Friday afternoon.

Feeling a little elated, I check my email and discover an email from my nurse...cold sweat on a sunny California vacation day...she lets me know that my recent labs reveal that I have been diagnosed with another lifelong virus...CMV.

CMV? Huh? I look it up. 50-80% of adults have it, almost all are asymptomatic, most people don't know they've got it, blah, blah, blah....but can be dangerous to people with compromised immune systems. One site refers to CMV as the single most important infection for transplant patients. Another touts:

CMV is an immunomodulatory virus, and its effects on the host include enhanced susceptibility to opportunistic infections and, probably, chronic allograft dysfunction. Another indirect effect is acute and/or chronic allograft injury and dysfunction

I am disappointed, to say the least. More accurately, I am scared and anxious and overwhelmed and angry about the future, the unknown. I feel my paranoia about medical outcomes becoming a way of life, not a temporary detour on my road to liberation.

I can't find much on treatment. I check support groups and understand that transplant patients with CMV feel

• Fatigued...check
• Gastrointestinal issues...check
• Muscle Aches...check
• Fever/night sweats...check

This is all the stuff I've been pushing through. None of it stops me in my tracks, it has been draining on me for a couple weeks. I haven't exercised, I haven't eaten consistently, I haven't felt badly enough to give in, but haven't felt good enough to do anything more than I've had to.

I'll have to wait to talk to my nurse and my doctor. Without their input, I'm spinning my wheels trying to solve a mystery without any clues, like I'm Velma stuck in a Scooby Doo episode that never gets past the first commercial, before Daphne trips over the obvious clue and before Scooby sniffs out the Scooby Snacks. I really want to fast forward to the end where Fred and his ascot reveal everything.