Timewarp Tuesday: The Needle And The Damage Done

Although it's not something people with diabetes like to think about, the fact is that even by following the rules of diabetes management, sometimes even the most "compliant" patients end up suffering complications. No study, not even the much-ballyhooed DCCT has ever proven that glycemic control alone can guarantee a life free of diabetes complications, whose etiologies may be caused by autoimmunity/inflammation or other factors besides inadequate glycemic control. Renal (kidney) failure is among the most severe so-called diabetes complications, as without an organ transplant, patients must endure routine dialysis several times each week or face certain death. For that reason, any person in the U.S. who goes into renal failure is automatically covered by Medicare, regardless of their age. However, thanks to both kidney AND pancreas transplantation, some of the patients suffering from this terrible disease complication can begin life again, only WITHOUT diabetes.

A number of prominent diabetes advocates believe this is an under-utilized procedure, including Showdown With Diabetes author Deb Butterfield. To be sure it's major surgery, but patients who are already suffering from kidney failure are typically much better off than to go with a kidney-only transplant, as they'll have to take immunosuppressants for life anyway, and to put a transplanted organ into the toxic environment characterized by glycemic instability which destroyed their own kidneys is quite illogical. However, those with living donors may need to wait on an organ registry for pancreas transplant and are eligible to have it done as a follow-on procedure. Still, the experience can be profoundly life-altering, and very often, in a good way!

Back in 2000, reporter Scott Bowles, who was diagnosed with Type 1 diabetes at age 14, chronicled his wait for a kidney-pancreas transplant in the pages of USA Today. At the time, he was a reporter for the Los Angeles bureau of that newspaper. But on Jan. 12, 2000; his wait ended. Scott chronicled his story (or in the book with the aforementioned title, ISBN: 0738846716, which is out-of-print now, but you may try your public library first) which I saved here. I'm not sure how long I'll maintain my version of sight, however, as Mr. Bowles himself has saved me the trouble of maintaining that archive at his own, personal website here. Below is the transcript from his incredibly moving and interesting piece of journalism.



THE HOSPITAL JUST CALLED - YOUR ORGAN IS IN
By Scott Bowles (USA Today, p. 10D)



Nov. 16, 1999

My blood sugar level is soaring, and I have to take an insulin injection before I pass out. I try to stab the needle into my thigh, but it's too blunt. It won't penetrate my skin. I scramble around looking for a razor blade, a sharp pencil – anything to slice open my leg to get the medicine in.

I start awake and find myself rubbing my leg. Another nightmare. I roll out of bed, fix my insulin and grab my right thigh, the place where I have jabbed more than 15,000 shots.

Then I take another.

Dec. 19, 1999

My boss, deputy managing editor Mindy Fetterman, calls me into her office. They want to give me a job in the Los Angeles bureau of our paper.

I'm elated. A national bureau position offers freedom and variety I've always sought on the job. Plus, my wife, Julie, spent four years in California, and the idea of returning has intrigued her since I've known her.

There will be hurdles, though, thanks to my diabetes. For more than a year, I've been on the wait list for a kidney-pancreas transplant. A new pancreas would rid me of diabetes, and a new kidney would restore the function irreparably damaged by the disease I've had for 20 years.

While we don't expect organs right away – some people wait more than three years for a kidney – there's no telling when my time will come. A move would mean changing our health insurance, and there's no guarantee a new carrier will pay for a transplant. And if the organs arrived in the middle of a cross-country move from Washington, D.C., it would be a logistical nightmare.

Mindy and my other editors don't flinch in their support. Address transplant matters when they arise, they say, and bureau matters will work themselves out. Julie and I plan a trip to scout out Los Angeles. One last assignment in New York City and I'm West Coast-bound.

Jan. 11, 2000

I'm sleeping in a Manhattan hotel when the phone rings about 2 a.m. It's Thuan Elston, a copy editor. She's breathless. "Scott, the hospital just called – your organ is in. You have to call them right away."

I'm out of bed in a heartbeat, as confused as I am charged. The hospital had my pager number. Why wasn't I beeped? Then I look at my beeper.

I was so tired from the flight that I had left the pager on its vibrate signal and attached to my belt on a cushioned chair. It had been screaming silently for nearly an hour.

I call the transplant center where I'm on the wait list, Fairview- University Medical Center in Minneapolis, and learn that a 21-year- old man has died in an accident in Fargo, N.D. His kidney and pancreas, the nurse says, "are a near-perfect match" for my body.

I guess the call would have been a shock no matter when it came. Until now, the idea of a transplant, of life-altering surgery, floated beyond my grasp. Until it happens, it's hard to imagine it ever will.

But this call is especially surprising. Doctors had told me that because I was in relatively good health, my best shot at a kidney would be from a living donor. Only four days earlier, one of my closest friends, Michael Ingram, had cleared the final medical exam and was ready to donate one of his. This means he'll stay off the operating table. My greatest transplant concern is not its chances for success but its risk of putting someone I love under the knife.

Without pondering, I tell the nurse yes, I'll take the organs. She tells me I have to move fast. Once organs are harvested from a body, they can survive only 24 hours.

I phone Julie, and excitement overtakes us. We will plan early morning flights for Minnesota and will rush to the hospital.

I call my parents and friends and tell them the news. Finally, I get a chance to speak with Michael. I can tell by his voice he is both happy and deflated. He takes a quiet tone. "I feel like I let you down," he confides. "You don't think I said something to the nurses that ruled me out, do you?"

I'm nearly overcome by emotion. Donating a kidney would have meant getting cut nearly in half and spending weeks in bed. Yet Michael was ready to do this – wanted to do this – for me. I tell him he's crazy, that this is the best we could have asked for. Besides, I joke, he's not out of the woods yet. If this transplant fails, he's still a match.

In my heart, though, I do not worry about failure. Seeing what people have gone through to give me a shot at a new life assures me this surgery will work. I have been too blessed for it not to.

Jan. 12, 2000

This plane is never going to land, I think. Minnesota is in the grips of a snowstorm, and my plane bucks like a mechanical bull on its descent to the airport.

But we do land, and I find Julie waiting for me at the terminal with a car rented and ready to go, as well as maps to the hospital.

Driving there is tricky. The snow is swirling and sticky. Twice I get out to chip ice off the windshield and wipers. Once I drive off the road. Maybe the fates have changed their minds.

When we arrive, the hospital is waiting for me. A nurse leads us into a room, and medical personnel swarm. Some bring paperwork; others, needles and vials. A nurse sits next to me and explains what's to come. Doctors won't take out my pancreas and kidneys; they'll simply add two more organs, right in the belly. Despite the gravity of the pending surgery, Julie and I are in high spirits. We joke that maybe doctors could throw in a new stomach while they're at it. Mine has been acting up.

The nurse laughs, then gives me a more serious look. "It's going to be a rough couple miles ahead for you," she says. Surgery will take at least seven hours. There are risks of infection, reaction to anesthesia, even heart attack. After surgery, I'll be full of tubes, needles and pain. The hospital stay routinely runs three weeks, with six weeks of rest at home. "Down the road, you'll feel like a million bucks," she says. "But it's going to be tough at first."

Still, I'm ready. For 20 years, I've viewed diabetes as an enemy I could never get the best of. My chance to finally confront it, perhaps defeat it, is here.

After being undressed and scrubbed down, I'm placed on a bed and wheeled downstairs, where surgeons and my organs await. The parade of doctors and nurses continues. Some tell me what they'll be doing during the operation; others take my vital statistics.

"I have to say, you're the healthiest transplant patient we've seen here in some time," a doctor says.

For the first time, my confidence wanes. Am I entering this too quickly? Should I have waited to grow sicker or go on dialysis? What if advancements two years from now make transplants unnecessary? I pull Julie close and ask her if I'm doing the right thing. She leans in, tells me it's not too late to change my mind.

I shake my head. In my heart, I know it's right. Being healthy, doctors have told me, will help speed my recovery. And dialysis is a prospect I never want to face.

More important, I'm tired of conceding days to diabetes. I'd rather lose to something like a transplant -- or a train wreck or crazed gunman, anything – than to the disease that I've fought since I was a boy.

Doctors prepare to roll me into the operating room when my mother, father and Michael hustle into the room. My folks are scared, I can see in their faces. But they are also relieved to have seen me before surgery. I hug them all, tell them I'll see them on the other side. Julie squeezes my hand, kisses me, and I'm off.

The operating room, from my horizontal perspective, is all lights and bright ceiling tile. And freezing. They lift me off my bed and onto a narrower pad in the center of the room. "The anesthesia will take effect in a minute," a surgeon says. "The room will start to spin a little, and you'll be out."

It does, and I am.

Jan. 13, 2000

Today I'm not diabetic.

Not that I really know this. I'm barely conscious in my room, doped on painkillers and tethered to every possible tube and monitor. Julie's is the first face I recognize. The surgery took nine hours but went well, she tells me. I nod, barely comprehending. I've got so much morphine in me that she could have said doctors removed my nose and I would have nodded in approval.

By late afternoon I'm more conscious and begin to comprehend what has happened. I look at my stomach and see it's distended and bulging from the new organs. Metal staples, running from my belly to the top of my groin, keep them held in. A blue rubber tube runs from my left nostril into my stomach. Catheters and hoses poke from me. I look like a last-minute science project.

My crude appearance belies a miracle, though. Unlike those of some transplant patients, my new organs began working nearly immediately. The pancreas is pumping me with insulin as if it were my original one. I won't eat solid food for days, doctors say, but when I do, it won't have to come compliments of a needle.

Doctors and family filter through the room to talk, encourage, check on me. For most of the day, though, I'm relegated to my bed and my thoughts. While I realize my life has made a seismic shift, I can't get my mind off the accident that brought me the organs.

I keep picturing the donor's parents, mourning at a hospital, hearing from doctors that their son can't be saved. Yet in the midst of their grief, they managed a decision like organ donation. While my family celebrates the start of a new life, theirs will be forever shattered.

Drifting to sleep, I decide I will send his family my journal articles, if they want them. I want them to know their son isn't completely gone, and I have no intention of letting him die in me.

Jan. 14, 2000

Time to stand. Doctors want me on my feet as soon as possible to get my blood flowing and muscles working. They help me up, and I walk to the foot of the bed. It feels like a marathon.

I turn around, pad back, crawl back into bed to the sound of congratulations. Victories will come like this, initially, in baby steps.

More friends and family arrive in the evening. My sister and brother-in-law come in, as does Spencer Tirey. Spencer had been worked up as a kidney donor, only to be ruled out at the last minute. He squeezes my hand so tightly it bruises.

I'm still weak and out of it, but I can feel my senses returning. I'm trying to joke and smile and beginning to think of life outside the hospital.

Doctors say my kidney and pancreas continue to work well. I'll be on anti-rejection drugs the rest of my life, and much of the next two weeks will be spent determining how much medicine I'll have to take.

It's a delicate balance. I'll need to take enough anti-rejection drugs so my body doesn't attack my new organs. Those drugs, however, have a whole world of side effects. Some can cause weight gain. Some hair loss. Others can make me nauseated, weak, even prone to some cancers.

But there's one thing they'll all do: help keep diabetes at arm's length.

Jan. 15, 2000

Something is going wrong. My breathing is labored, and I feel weaker than the day before. Nurses who were initially making normal rounds through my room are coming by more often to take tests and blood. Here are doctors. My back aches, and I can't stop squirming in the bed.

The pain intensifies, and I descend. This was all a mistake, I think. Four days ago I could play tennis for hours and barely break a sweat. Now I can hardly lift my arms.

A doctor enters the room and tells me that I'm bleeding internally from the first surgery. They will have to operate again. I welcome the news. At least they've discovered what's wrong and can take steps to fix it. Nurses phone Julie at a nearby hotel, and she sprints to the hospital to touch my forehead before I'm wheeled in.

This time, I dream during the surgery. I picture five men standing over me, holding me down. One places his hands over my mouth, suffocating me. I flail, try to struggle, but can't wrench my mouth free. Perhaps I struggled with the surgeons, I don't know.

Finally I come to and find Julie at my side in the recovery room. Once again, I'm told surgery went well. Let recuperation begin again.

Jan. 16, 2000

Television stinks. Even though the NFL playoffs are on -- something that normally would keep me glued to the screen all day -- I've been confined to a bed for four days now, and I'm going stir- crazy.

I haven't eaten anything since I arrived here and must suck on ice chips instead of drinking. Too much water can make me sick, and the last thing nurses want is for me to throw up my medications. A godsend arrives at 5 p.m.: my first dinner. It's broth and gelatin; I'll be on clear liquids for a couple of days.

Still, the beef water and green Jell-O are chef's masterpieces to me. I want to clean both bowls, but my stomach is too sore to put much in it.

Then I realize: The Jell-O was full of sugar. A week ago, eating it would have sent my blood sugar sky-high, maybe even made me sick. Today, it's just another snack. I eat one more cube in victory.

Jan. 17, 2000

Julie and I take our first medication class. The same way I had to learn how to take and adjust my insulin doses as a diabetic, I'll have to learn how to take my anti-rejection drugs. For the first few months, I'll take upward of 40 pills a day, though the amount will dwindle over time.

I will also be a human pincushion. Doctors will keep close tabs on me after my release, which means having blood drawn three times a week. Looks like I'm not quite through with needles.

Jan. 20, 2000

The doctors say recovery is going well. I'm on solid foods, taking occasional strolls to the end of the hall and receiving cards and flowers from friends and family every day.

David Sutherland, a surgeon who performed the transplants, says that on a scale of 1 to 10, he'd give my recovery an 8. The new organs, he says, are functioning a full 10 out of 10.

Logically, I know things are progressing. But being bound to this bed, this room, these intravenous tubes and gowns and antiseptic smells – it's hard to feel like I'm on the way to a better life. I have never taken well to hospitals. I tell myself to be patient. Soon I'll be doing the things I love: driving, playing music, petting my Labrador retriever, Larry. Move around, that's all I want to do.

But it still seems so far off. Julie, as always, can see the restlessness in my eyes. "Let's go, baby," she says, pulling into my room with a wheelchair. "We'll get you out of here."

I get to my feet, bundled with blankets, and collapse into the chair. Even sitting upright can be tiring, but suddenly I feel some strength returning.

It comes from the slight breeze on my face as Julie pushes me down the hall. Technically, we violate the rules of the hospital. Julie is taking me off the floor, down the elevators, out of my permitted range. We don't care. The more we roll, the freer I feel.

We approach a ramp leading to a lower floor, and Julie picks up the pace. We're rolling faster now, the slight breeze becoming a wind on me. I'm cold but tell her to go faster. She's running now, and the tiles of the brick walls blur by. If she trips or loses her grip on the chair, I'll go tumbling out. I can see myself smashing my knees on the cinder blocks.

I close my eyes and smile. For the first time, I'm out of here. I'm on my motorcycle, playing tennis, walking with Julie and Larry through Rock Creek Park. I'm moving again.

She finally slows, and we stop in the hall, laughing. I will leave here soon; I know that now. There's too much life waiting for me at home to pout about the few days in a hospital.

Jan. 25, 2000

My release date is here. Doctors want me to move into a hotel for a few days so I can be nearby for lab tests and checkups. As far as I'm concerned, though, I've gained a full pardon. To sleep in a real bed and walk to dinner are freedoms I haven't known for two weeks.

I haven't had a breath of outside air for half the month. I get my first while waiting for a hospital shuttle. The temperature is in the single digits outside, and as I walk to the van, I feel a gust of wind slap me hard. The icy air feels like it's slicing through my lungs. I wince and gasp and feel my eyes start to tear up.

It's wonderful.

Jan. 29, 2000

After 17 days in the hospital and hotel, it's time to go home. Julie and I can't wait. We've watched so much television that we know commercial jingles by heart. Julie has developed a Judge Judy addiction.

When the plane touches down in Washington, Michael is waiting. He's there not only to welcome us back: I won't be able to lift more than 10 pounds for two months, so he'll help Julie with the luggage. I hug him hard as we step into the terminal.

We pull up to the house, and I can feel it. I'm back home. The 13 steps to our front door exhaust me, but I gain a second wind when Larry comes bounding out. He nearly knocks me backward greeting us.

Inside, Michael has put up a banner and balloons. We drop the bags and, for what feels like the first time in nearly three weeks, relax.

I head upstairs. I want to see some more of the house. I walk into our bedroom, the coziest room in our home. I smile looking at the unmade bed, my clothes strewn on the floor, my music scattered underneath the stereo. I've missed this mess.

Then I see my dresser. Two insulin bottles and a needle sit on top. I grab them, heading to the bathroom to throw them away in celebration.

I stop. I'm not out of the woods yet. If I reject my new organs down the road, I'll be in the same boat I was before, a diabetic with failing kidneys.

It doesn't get me down, though. All my adult life, doctors have told me diabetes is forever. Needles and shots and finger pricks will be a permanent fixture in my life, they said.

More than that, the disease had always given me a grim certainty. I always felt that, over time, my diabetes would worsen, the complications would become more severe, and eventually I would succumb.

Now none of that is clear. For 17 days, I haven't needed a drop of bottled insulin. My kidneys work like anyone else's.

I take the insulin and needle and shove them in a drawer, buried beneath a pile of shirts. That will do for now. I know the transplant raises new risks and issues, but it also holds the possibility of never fishing out those insulin bottles again. And it holds a greater prospect: the chance for a healthy life.

I had forgotten what that feels like.

[Illustration]

GRAPHIC, B/W, Suzy Parker, USA TODAY, Source: Diabetes Institute for Immunology and Transplantation at the University of Minnesota (Diagram); PHOTOS, B/W, Michael Madrid, USA TODAY (7); PHOTOS, Color (2), Michael Madrid, USA TODAY; Caption: Nervous joy: After months of waiting for this moment, Scott Bowles and his wife, Julie, are apprehensive but elated just before sending him off for the surgery that will give him the kidney and pancreas of a young man who died in an accident. Nine hours of surgery: Surgeon David Sutherland, left, prepares the kidney that he and Luis Arrazola, right, will place in Scott Bowles' abdomen. The donor kidney supplements Scott's failing kidneys, which are not removed. Woozy post-op: Julie Bowles gets some assistance from nurse Julie Streitz, left, and anesthesiology resident Dimitry Sintsov when the first glimpse of her husband after his double-transplant operation leaves her feeling faint. A new home, a new life: Surgeon David Sutherland positions the kidney that will change Scott's life. Recuperating: USA TODAY's Scott Bowles chats with a fellow reporter while in recovery from a kidney-pancreas transplant. Bowles has been chronicling has battle with diabetes and his hopes for a permanent solution. New chapter: USA TODAY reporter Scott Bowles, with his wife, Julie, learns about anti-rejection medicine as he recuperates from a double transplant intended to end his diabetes.

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