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.