Double transplant for type 1 diabetes brings troubles, gifts
Updated 1/11/2010 12:05 PM ET E-mail | Save | Print
Enlarge By Dan MacMedan, USA TODAY
Immersing himself in a hot bath while taking anti-nausea pills brings Scott Bowles some relief from cyclic vomiting syndrome.
By Scott Bowles, USA TODAY
Ten years ago Tuesday, USA TODAY’s Scott Bowles had a kidney and pancreas transplant to treat his juvenile diabetes. He kept a journal of the experience, which ran as a series in the newspaper and in his book, The Needle and the Damage Done. Bowles, 44, a film reporter in Los Angeles, looks back at the decade and life after the surgery.
Albuquerque, April 7, 2009
Denzel Washington is going to have to wait.
The star is on a nearby stage, rehearsing
But I’m not going to make it. I’m on the floor of a publicist’s darkened office, on my back, trying to slow my breathing and fight off the nausea and heart palpitations that are racking my body.
READ MORE: Type 1 diabetes’ effect on daily life
It has been 10 years since I opted to treat my diabetes with a kidney and pancreas transplant, a decision that, for the first time, I’m beginning to question.
I find myself on a hospital gurney with frightening regularity lately. Where once I was going to the hospital every six to eight months, now I’m there every six to eight weeks. My weight is down to 139, lighter than I was in college. Three days without nausea or a racing heart feels like a good stretch of health.
More frightening, doctors aren’t sure how to keep my body from breaking down. They’ve diagnosed me with two post-transplant illnesses: cyclic vomiting syndrome (CVS) and atrial fibrillation. CVS is a powerful wave of nausea that hits without warning and can last hours, leaving me heaving long after my stomach is empty.
The nausea depletes me of electrolytes and minerals, which sends my body into the more dangerous complication: atrial fibrillation, a condition in which the heart pumps twice as fast as normal but circulates only 60% of the blood, raising the risk of a blood clot and stroke.
Today, I’m in the throes of both complications. I’m rushed to New Mexico University Hospital, where nurses are having trouble finding a vein. I’ve had so many blood draws over the decade that my veins have scarred and it’s difficult to find one that’s usable.
They try two sticks in the left arm. No luck. One in the right. Same result.
A nurse suggests mining my neck. I close my eyes: This is the one place I thoroughly feel the needle. The vein works all right; it’s dashing us both in arterial spray, too much for her to secure an intravenous tube. Finally, she sinks the needle between the fingers of my right hand and finds a vein.
After a bit, I feel the medications open my lungs and nudge me toward sleep.
But not before I think to myself: I can’t keep doing this.
Los Angeles, July 14
My doctor for the past 10 years, Michael Brousseau, has me in his office. My mother is here, too. She has traveled from Atlanta to meet with physicians and brainstorm.
Brousseau is frustrated. I’m on a dozen anti-nausea medications — some of them designed for cancer patients on chemotherapy — yet nothing works with consistency.
He connects me with two more specialists, who will focus on my stomach and heart. “Something has to work,” he says. “Because right now, you’re not functional.”
The words throw me. I had this surgery Jan. 12, 2000, as a salvo against the disease, which over 20 years claimed both kidneys, one-third of my sight and almost all hope that I’d reach 50 with my vision and limbs intact.
And for five years, it seemed, the transplant was the solution. To this day I’ve had no rejection episodes and not a drop of insulin.
But the new complications are frighteningly quick and forceful. I was never staggered by an insulin reaction or high blood sugar as I am by these side effects.
We drive home, and I excuse myself to the bathroom. I run a hot bath (the one treatment that seems to settle my nausea) and turn up the radio so Mom can’t hear me lose my composure in the tub.
Maybe I don’t beat my body’s demons. Maybe I already was as healthy as I’m ever going to be.
Mom and I are walking through the mall when I lose my balance. The new medications are interacting poorly, leaving my head swimming and my legs unreliable. I flop in a mall seat while Mom goes for something to drink.
A woman who has been watching from a nearby bench walks toward me. She holds a package of gum and offers me a piece.
I’m not sure how to respond, so I take it and thank her. She shakes her head — she doesn’t speak English — but smiles and offers another piece.
The gum does nothing, the gesture everything. By the time Mom is back, I’m already feeling better, energized by the random kindness of the woman, who nods and smiles as Mom and I pad off.
This disease can offer such odd, sweet consolation prizes.
A nurse calls me at home, the first time I’ve heard from my insurance company unsolicited.
“It appears you’ve been having some complications of late,” she says. “Is there anything we can do?”
I’m cautious. I’m getting two dozen bills, letters from hospitals and benefits explanations every month now, and I must be signaling a red flag with the insurance company. My anti-rejection drugs have jumped from $1,200 a year to $2,800. And that doesn’t include hospital stays, ER visits or nausea medications that run $150 a week.
No, thank you, I tell her. We have specialists working on it.
She presses a little more, asking for some details of my recent hospitalizations. She gently asks whether this is a new problem or something “that might have been pre-existing.”
I freeze. I know what that phrase means. It means you’ve become too expensive to keep healthy. No, I say flatly before getting off the phone, it’s a new problem.
Fortunately, I didn’t have to lie. This is new. I could use help. But I’m not sure she’s offering it, and I would have told her my nose wasn’t a pre-existing condition if my insurance were at stake.
My good friend Jocelyn Smith is visiting when I feel my hands and feet go numb — the surest signal I’m headed into atrial fibrillation.
Without a word, she jumps into action. She eases me into her car, drives me to the hospital and gives the doctors the rundown on my medications and symptoms. She stays the duration of the six-hour wait for a bed.
Somehow, this trip to the hospital is easier than the others.
Maybe it’s seeing Jocelyn oversee the chaos like a M.A.S.H. nurse. I’ve watched as my friends and family turn into a team of first responders: paramedics, doctors, ambulance drivers. All without asking or asking anything in return.
Not that there’s any way to repay what they’ve given me.
I’m beginning to understand how dogs improve and lengthen the lives of the elderly. Mine are making this place more homey.
When I’m ill in the bath, I notice, they quit roaming the house and cram into the bathroom. My golden retriever, Teddy, curls up by the tub. Esmé, a diminutive Boston terrier who acts as his orbiting moon, nestles into his belly.
I don’t want to be that crazy dog guy, but I’m convinced their company helps. It’s comforting to reach over the tub and bury my hands into that warm, tangled fur pile, something that could have sprung from Where the Wild Things Are.
I’ve read the studies that say domestic animals have learned over the years to befriend humans to maximize food and shelter from us.
But I prefer to think they can’t stand the thought of me being alone or sick.
This could be a strange Christmas. Because the nausea and A-fib can strike so suddenly, I can’t risk being on a plane for five hours to visit my family in Atlanta. This will be the first Christmas I don’t make it home for some part of the holiday season.
I wake up ready to dread the day, but my body has surprised me. No nausea, no heart-skipping.
I decide to spend the day visiting people dear to me: Anthony Breznican, who cooks for me more than I do; Luz Elena Avitia, who has become a surrogate parent to my dogs when I’m sick; and Michael Ingram, an old friend who offered me one of his kidneys 10 years ago.
The trip isn’t without risk. Luz and Michael are in San Diego, and the complete drive will take at least five hours — as long as a flight.
But I’m tired of my body caging me. I stuff a few meds in my jeans and hit the road.
The day flies. Everyone is in good spirits, my heart is behaving and by the time I’m driving back, I’ve forgotten how long I’d gone without a moment of nausea.
When I get home, I realize that I haven’t opened any presents under the tree. I know it’s corny, but this Christmas — filled only with people I love — has a Seuss-ian feel to it. I go to bed without touching a gift. I’ll do that tomorrow.
Tonight, I’d like to remain that Who in Whoville.
Jan. 9, 2010
Tuesday marks what I consider my 10th birthday: the day I received my organs.
It also marks the day Valerie and Leroy Flegel took their 21-year-old son, Samuel, off life support.
I have trouble reconciling this. How does that much despair create that much hope?
Samuel was, by all accounts, an extraordinary young man. Born with a learning disability similar to dyslexia, he overcame it to earn his GED and become an engineer for Red River Valley and Western Railroad in Wahpeton, N.D.
He was riding home from a New Year’s party in Fargo in 2000 when he hit a parking lot abutment hidden in snow. By the time police found him, he was brain-dead, though the subzero temperatures kept his body alive.
Now I carry him.
For some reason, I rarely get sick around the anniversary date, and this time is no different. I wake up hungry, energized. Healthy. I hop in the car and drive for a doughnut, something I could never have eaten as a diabetic.
On the drive back, I’m a little angry at myself for being so self-pitying, for questioning this fight. There is no beating diabetes, just changing the complications. But at least I have a chance for better health, something Samuel never got.
And perhaps more than any other anniversary, this one reminds me that I do not fight alone. Through all this, friends have become family and family has become closer than it has ever been. Strangers have offered whatever they have. I think of them and it propels me, literally.
I am awake now, opening up the accelerator as I drive home. Music rattles the windows of the car. I don’t want the drive to end.
I speed past the exit for my house. The morning is bleeding into afternoon, and it’s too warm, too nice to stop moving. I’m going to drive until I run out of gas.
For every day I spend sick or in a hospital, it seems, I receive one that is equally fine. That’s where I discovered the unexpected gift of diabetes, one that I would never return: the capacity to recognize and enjoy the moment.
A nausea-free morning. A symptom-free afternoon. A good day.
Like this one.