By Susan Prisant

Yesterday it became real.  I was choking just listening to an hour of horrifying instructions over the phone.  You want to scream out: “Stop. No. I’ve changed my mind.”

But how can I?  My husband will die.

The heart transplant coordinator is telling us every unpleasant detail to come, now that he has been formally added to the National Register for a double transplant. Things that you really did not want to know about.

There will be a comatose donor, nearly brain dead, and a family in agony. No goody-byes. No more life to share with them.

How will we face stealing a life that is no more, so my husband may live? Maybe.

While our minds can’t help but wander to these ethical, life-and-death issues for a split second, the heart coordinator  continues on through her list.    The phone will likely ring in the middle of the night, she says, waking us from a deep sleep and beginning the final phase of this latest medical odyssey. Frightened for our lives together, there’s not time to think. We absolutely must get to the hospital within four hours.

We’ve never been big believers in telephones.  We’re notorious for just letting calls go to voicemail.  Our argument was unassailable―we never ever missed an offer of a million dollars, an authentic call from Elvis or a Presidential appointment because we didn’t pick up the phone.

But not anymore.  If you miss one call for a donor that matches, that could be the ballgame.  So we’ve now got to be packed and ready.  And jump to answer every call.

Now she’s saying “so the first surgery will last ten to fourteen hours.” (10 to 14 hours??) And I’m immediately thinking:  Oh my God…what will I do, waiting to hear?

But she’s still talking.  When the surgery’s over, she says, Mrs. Prisant you will see your husband connected to ventilators, monitors and more.

I’ve seen all this before with Sandy―twice now, but this time I will have to wait all alone.  There are no more lifelong doctor friends around and no family. So there’ll be no one putting their arms around me; no one offering kisses and hugs.

And then, within 36 hours, the next agony will begin―the second surgery. The kidney transplant.  That should take about nine hours more.

The coordinator is still reading all the rules and instructions. Not cold, but very business-like. Is she slightly detached? After all there are dozens of candidates who get this far and need to know these rules even though some will never get that transplant.

And every few minutes I can’t listen anymore. We’ve lived with this illness for over four decades, but none of it felt as daunting as this―after eight months of evaluation, we’re now facing hospital testing and blood draws almost every other day for weeks or maybe months after surgery.

This phone call is now becoming suffocating.  Our throats are dry as we listen and grunt acknowledgment of each instruction.  And then, “Mrs. Prisant you have to get your own accommodations for the two weeks or more Mr. Prisant will be in hospital.  And then three days a week he will have to come back for checkups. You will be responsible for room, board, meals parking, etc.  (She forgot about the cost of kenneling the dogs and other incidentals.) You stop listening to her for a second as your internal calculator starts throwing up big numbers. Very big numbers.

Having been through these near-death experiences before, you might think I wouldn’t find this overwhelming. But it’s almost a year now since Sandy has been so sick. And all those months since we started the grueling transplant evaluation.

It tells you all you need to know about saga to learn that on the very night, December 28, we got good news: my husband formally went on the National Transplant Register. And bad news:  he was ordered back into hospital for kidney failure problems. Hope and heartache. Hand in hand.

And that left me in a hotel room nearby. The next morning this very charming lady in the hotel café asked if she could share my table. Her husband was also in the hospital.  It’s easier to talk with a stranger when they’re sharing similar pain. But Karen’s situation was different. Her husband had already been on life support and just died.  Our pain was one. We held each other, no longer strangers. Two women sharing a moment of peace.

And then Karen stopped her story in mid-stream and made an astonishing offer. She learned slightly forward and said to me: “Can I offer you my husband’s kidney?”

Susan Prisant’s husband is awaiting a kidney and heart transplant after a lifelong struggle with a congenital kidney ailment. The both blog about their experiences at My Story Lives.

By Eijean Wu, MD

As an OB/GYN resident, I tried to reconcile quality and cost of care every day. This is the story of one patient who cost the system a lot of money, but I don’t know to this day if it was too much.

Cheryl (name changed) had HIV, a history of cervical cancer, and 3 kids. At age 35, she had been cured from cervical cancer after surgery and radiation therapy. However, due to treatment-related fistulas, she had been in and out of the hospital for most of the year. I was taking call for the gynecology service the last time her family brought her in, delirious and with black, sticky stool oozing from an opening in her unhealed abdominal incision. She needed wound care and close monitoring in the intensive care unit (ICU). I paged the ICU team.

The ICU fellow came promptly, and briskly refused to accept her to his unit. “She is a poor use of scarce resources,” he stated matter-of-factly. “Further treatment is futile.” Without missing a beat, I looked him in the eye and countered, “What if this was your sister? Your mom?” He relented begrudgingly, but added, “This is why health care is so expensive in this country. You surgeons don’t know when to let go.”

Continue reading…

In Too Expensive to Treat? Charles Camosy takes readers deep into the emotionally charged and expensive world of the neonatal intensive care unit to examine the hard truth about heath care rationing in the United States. While fully affirming the human worth of even the tiniest baby, Camosy maintains that all people have equal dignity and should have an equal right to a proportionate share of community health care resources. Readers may find Camosy’s arguments provocative, even troubling — but the conversation he draws them into is one that cannot be ignored.

Daniel Sulmasy
— University of Chicago
“A substantial contribution to the literature on controlling health-care costs. . . . Camosy has written a provocative book, marrying the ordinary/extraordinary means tradition to Catholic social teaching and arguing that it is morally necessary to take costs into account in making decisions about who should receive high-tech neonatal intensive care. Since the magnitude of the problems Camosy addresses will only increase, this is a book that should be read for years to come.”

Steven R. Leuthner
— Medical College of Wisconsin
“This book is a must-read for neonatologists and bioethicists, for religious leaders of all Christian traditions, and for policy makers. While Camosy focuses on the imperiled newborn and Medicaid, his argument could easily be expanded to imperiled cases of any age.”

Gerald McKenny
— University of Notre Dame
“Camosy not only shows us how to solve a pressing social and bioethical problem. He also shows us how principles regarding human dignity, ordinary and extraordinary means, and social justice unite to form a coherent bioethical approach to health care justice that resonates far beyond the Catholic tradition. Camosy’s proposal will delight some and disturb others, but it deserves the closest attention of neonatologists, bioethicists, health policy experts, and anyone who hopes for a more just health care system in the United States.”

By MICHAEL PAINTER, MD

I am here in California at the Health 2.0 conference with 2,000 health care innovators. One of the most popular Health 2.0 sessions is called The Unmentionables—where speakers discuss those important things that affect our health but we’re often afraid to address. I participated in thisyear’s session where we talked stress—what it is and how it’s making us sick.

I’m an avid cyclist. That means I train a lot. Training on a bike means purposefully and intensely stressing your body—sometimes ridiculously hard—in order to make your body stronger, fitter and faster. In that sense stress can be really good. You can’t get stronger without it.

But here’s the key: as you ratchet up that stress—the miles, the hours on the bike, the intensity— you must work just as hard on the flipside, the buffering. The more you train, the more you have to focus on the rest, the sleep, your social supports, the yoga, the nutrition—whatever it takes.

If you don’t buffer you will burn out, get injured or sick, or all of the above. Without buffers, the stress will crush you.

The Robert Wood Johnson Foundation has been thinking about stress and its connection to health for quite some time. We’re finding that in many ways we have a culture of stress rather than a culture of health. We need to understand that and work together to fix it.

I’m a family doctor and used to practice at a community health center in Seattle. I recently came across a story that reminded me of many of my former patients. Jeanette is a young mother living in Connecticut experiencing major stress in her life: she just had baby, was suffering postpartum depression, lost her job, was facing eviction, and her relationship was in trouble. Not surprisingly, her stress also affected her baby, Shiloh—just weeks old. Shiloh wasn’t smiling, didn’t play, and didn’t communicate.

When we’re under stress, our bodies produce an increased amount of cortisol. A certain amount is healthy, but too much over a long period of time can have very negative effects—especially in a developing brain. That is likely what was happening to Shiloh. Stress can exacerbate or cause lifelong illness like diabetes, depression and heart disease.

At RWJF we wanted to understand how the public perceives and manages stress, so we conducted a public opinion survey on stress with NPR and Harvard’s School of Public Health.

Here’s some of what we found:

• Half of those we surveyed had a stressful experience in the past year.
• Most who reported high stress were already in poor health—including many who have chronic conditions or illness.
• The vast majority said that stress negatively affects their family and social lives, how they perform at work—as well as their health.
• Over half of those with a great deal of stress and a chronic illness or disability said stress made their symptoms worse and their condition harder to manage.
• Over 90% said they manage or buffer stress by spending time with family and friends, exercising, eating well, or doing outdoor activities,
• Unfortunately, only 50% said they do things to buffer their stress.

The numbers, of course, are important, but the stories are even more powerful. Jeanette and Shiloh did get help from an RWJF-funded initiative, Child First—a home visiting program that helps stabilize families with young children. But that’s just one story; there are many, many more. When NPR asked people to share stories about the stress in their lives, they received an overwhelming number—6,000 responses when they typically only get about 500.

Why? Americans are stressed; they know it, and they want to talk about it.

Health isn’t just a lack of illness. It’s so much more—it’s enjoying and embracing life—that includes successfully managing life’s stress.

The goal of our work is health and well-being for everyone. We can’t get there unless we address the stress in our lives. (See our infographic about how to move from a culture of stress to a culture of health.) That means we must try to reduce it where we can and learn to directly manage it where we can’t.

What we’re finding: stress is making us sick.

The good news: we don’t have to let it.