The patient's decision: Data on dialysis facilities' outcomes

Roberta Wager went on dialysis in the early 1980s. "I had nothing, no frame of reference," for choosing a dialysis facility, she said.

But now, dialysis patients can have a much more informed choice. Today, ProPublica made available extensive information on the quality of dialysis facilities across the U.S., in an easily searchable database.

"It gives you a snapshot of what a clinic is about," said Roberta, a past president of the American Association of Kidney Patients who works as a nurse and patient educator at several dialysis clinics in Texas. "It should be the patient's right and the patient's decision to have [the numbers]….This is your life. Wouldn't you want to have everything in your favor?"

Almost 400,000 Americans depend on chronic dialysis to do what their failed kidneys cannot. Their number has grown swiftly over the past two decades, spurred by epidemics of obesity and diabetes.

Advice: Dialysis patients should look up the outcomes of local facilities on the database, interview current dialysis facility staff, tour the facilities, and gather information about staff members' experience level and turnover rates.

Read another dialysis story from this blog, or read ProPublica's full story by Robin Fields.

Don't ever come back: Barriers to palliative care

Dr. Bruce Ferrell, who helps lead the palliative care program at UCLA Medical Center, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this was as good as it's going to get."

Dr. Ferrell talked with the patient about whether he might want to leave the intensive care unit (ICU) to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

"We do not use the h-word [hospice] on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."

The patient chose to leave.

The UCLA Medical Center consistently ranks as one of the most expensive places in the U.S. to get end-of-life care, though its patients' outcomes are similar to hospitals that spend much less.

Advice to patients near the end of life: Even when in the hospital, you can insist on considering hospice care.

Read a story about hospice care. Thanks to Reed Abelson for the source story in today's New York Times.

After another week on dialysis he called back: Kidney donation

The first patient to list himself publicly on MatchingDonors.com was Bob Hickey, a psychologist in his mid-fifties who'd learned he had kidney cancer. At first, he'd done what his doctor told him to do: he went on dialysis, signed up on the official waiting list for a cadaver kidney in his region, and hoped that he would reach the top of the list before he died. His transplant center told him that he should expect to wait about four years.

On dialysis, you are attached to a machine for several hours at a time, usually three or four times a week, while the machine siphons off all your blood, cleans it of toxins, and injects it back into your body. Often the process leaves you too exhausted to work, or do much of anything besides recover. After four and a half years of dialysis, Bob, still waiting on the list, decided he'd had enough. He would rather die.

Less than a month later, he saw a newspaper article about a new company starting up – MatchingDonors. Bob phoned them, and the head of the company told him the service cost $295 a month, or $595 for life. Bob told him he was a carpetbagger and a rip-off and hung up. After another week of dialysis, he called back and signed on. Within a month, he had dozens of offers.

He screened them into a smaller set, and picked one at random: Rob Smitty of Chattanooga, Tennessee. The two men talked on the phone, and agreed. Bob was so excited that he jumped in his car and drove from Vail to Denver, more than 100 miles, to the transplant center to deliver the good news. The transplant center staff cautioned him, but accepted Rob as a donor.

Surgeons performed the transplant in October, 2004. Ever since, Bob has made kidneys his life's work. He advises people who are considering transplants. He raises money to compensate donors for expenses and lost wages. (Other forms of compensation for donors are illegal.) And he's fighting the kidney establishment on several fronts.

Advice: Read the stories at MatchingDonors.com

Read another story about a kidney match through MatchingDonors. Thanks to Larissa MacFarquhar for the source story in the New Yorker of July 27.

I reject that categorization: Life during dialysis

Frank Sietzen, Jr.'s story:
Daniel Asa Rose says dialysis leaves patients "with an enervated excuse for a life." As one of the hundreds of thousands of Americans undergoing hemodialysis, I reject that categorization.

Dialysis isn't easy – there is pain each session when a pair of 15-gauge needles are inserted in my arm and removed three hours later, but if a patient follows the appropriate diet and fluid restrictions, the remaining part of life is no different from anyone else's.

I have energy and a zest for life, swim and exercise every day, and am on the transplant list (which involves a five- to seven-year wait in my region). I am often told how "well" I look.

My life – which I call my 65% life since dialysis and related care consume about a third of my time – is a life well worth living, especially considering the alternative.

Advice: Live a life well worth living, like Frank.

Read a story about a kidney transplant patient's choices after a transplant.

Thanks to the New York Times for printing Frank's letter to the editor on July 17.

All he had to do: After the kidney transplant

Of course he had a right to be ecstatic. After many years on the waiting list for a kidney, his turn had come. He grabbed my arm and pointed to the urine that had collected in the tubing next to his hospital bed, the first visible evidence of his new kidney.

"Working like a charm!"

In a few days, he was discharged home to enjoy his new life, free from dialysis.

When I heard his name again, nearly a year later, I was immediately curious.

"I'm going to kill him!" The nurse practitioner who coordinated transplant care gestured over her shoulder to the numbers on the screen. The new kidney was barely functioning. "He stopped coming to clinic – I’ve been calling him for weeks."

He had stopped taking his immunosuppressive medicine two months earlier. Now his body was rejecting the kidney.

Once he was admitted to the hospital, I learned the reason. He'd had no side effects from the medicines; he had excellent insurance coverage, and a loving and supportive family. All he had to do was take pills twice a day, and he was free of the four-hour dialysis sessions that had been a part of his life for years. He could eat and drink whatever he wanted, travel, sleep in – as long as he took those pills.

He explained that it had started when he skipped a dose by accident, and nothing happened. Then he went a way for a week, without his pills, and again, nothing happened. Wasn’t the transplant supposed to make him well?

I realized there must be something profound that I did not yet understand about being sick, despite working with sick people every day. Cause and effect, interventions and outcomes, costs and benefits: these are easy to contemplate when someone else has to take the pills twice a day, sit in the chair for four hours, have blood drawn every week. For my patient, being hooked up to a dialysis machine was one kind of illness, and taking pills that protected a new kidney from failure was another. Maybe for him there was only one kind of freedom, and it happened for a few days on holiday: no pills, no symptoms, no doctors, no disease.

Advice: If you don’t want to take all your medicine, discuss reasonable alternatives with your doctor.

Browse for related stories in the index at the very bottom of this page, or read another kidney transplant story.

Thanks to Dr. Dena Rifkin for the source story in today's NY Times.

Like I had never heard before: A dialysis rescue story

Temarie Lee's story:
About five years ago I went to the Humane Society. I stuck a finger in a cage to say "hi" to a chubby black cat. He took to me straight away!

Three years later, I had fallen asleep after dialysis, when my arm started bleeding. Tubbee put his front paws on my face and started meowing like I had NEVER heard before. He woke me up and I was able to stop the bleeding. Tubbee saved my life.

Advice: Pets can be lifesavers, in more ways than one.

Read another pet story.

I would end the calls blubbering with gratitude: The psychology of kidney donors and recipients

Dr. Sally Satel's story:

My kidneys were failing. On a steamy day in August 2004, I went to the doctor for a routine checkup. I was feeling fine, but a basic test revealed that my kidneys were shot, functioning at about 16% of normal capacity. One nephrologist I went to predicted that within roughly six months to a year I would need to begin dialysis, three days a week, for four debilitating hours at a time.

In October 2005, I stumbled across a web site called MatchingDonors.com that helps link potential donors and recipients. I wrote only a short self-description.

Three days later, a Canadian man called. He told me he considered becoming a donor five years ago when he heard through his church about someone who was failing on dialysis. That was the most personal thing I learned about him. Well into November, we were in regular contact, mostly about logistics – whether my insurance would pay for his tests, whether he could take time away from a project he was working on, and so on. I ended the calls blubbering with gratitude, and he would tell me to stop.

Until both of us were snug in our adjoining operating rooms, I could never relax – everything was tentative, conditional, and prone to collapse.

About a week before Thanksgiving, the Canadian went dark. By then I was fatigued most of the time and fluid was pooling in my ankles. I took four antihypertensive drugs a day and had injections of a hormone that stimulated my body to make more red blood cells. Dialysis was closing in.

Around Christmas, he finally called. He swore he was still "raring to go with the transplant." A few days later, my young transplant coordinator, Julie, called him. Straight talking and bright-eyed, she spoke to him in a way I could not. "We need to know how to proceed," she told him firmly. "There is no time to spare. Can you be here in January for the surgery?" He conceded that the campaign he was working on was too unpredictable. Julie said he seemed to feel genuinely bad about reneging, but he did not tell her to convey that disappointment to me, and I never heard from him again.

I was astonished at the Canadian's … what? Negligence, cowardice, rudeness? It was a sickening roller-coaster ride: hope yielding to helpless frustration, gratitude giving way to fury. How dare he reduce me to groveling and dependence? Yet I assume he intended no such thing. I think the Canadian was actually quite devoted to the idea of giving a kidney – just not necessarily now or to me. He had led me on for weeks, and would have continued doing so had Julie not pushed him. Meanwhile, my kidneys were deteriorating, and I didn't have time for more cycles of commitment, silence and rejection.

Just before the Canadian withdrew, another potential donor had contacted me. She was the right blood type; even better, she was the right personality type. On March 4, 2006, I became the proud owner of Virginia Postrel's right kidney. She was out of the hospital within three nights; I was home after seven, and our recoveries were uneventful. I require no drugs except medication that prevents my body from rejecting the new organ.

Altruism is a beautiful virtue, but it has fallen painfully short of its goal. We must experiment with offering potential donors other incentives for giving, not necessarily payment but material reward of some kind. Unless we stop thinking of transplantable kidneys as gifts, we will never have enough of them.

Advice: Sally was able to discover her kidney condition through a routine physical exam, which gave her the time to find a good donor. Get a physical exam when your doctor suggests it.

Browse for related stories in the index at the very bottom of this page, or read a kidney transplant story.

Thanks to Sally Satel for the source story in yesterday's New York Times Magazine.

We were halfway down the hall before someone heard me yelling: A hospital transport error

It was 4 am, but Gillian Trumbull was wide awake. The 24-year-old Chicago woman knew she had to stay alert, having had many hospital stays.

She was waiting to be taken to a heart test. Instead, a hospital employee said he was taking her for dialysis, a treatment for kidney failure. He had confused Gillian with the patient in the next bed. He ignored Gillian’s protests and began wheeling her out the door.

"We were halfway down the hall before someone heard me yelling," she said. "A nurse manager said, 'She’s pretty lucid. I think she knows what she is saying.'"

Advice: Feel free to ask that a family member or patient advocate be with you, involved in your care.

Read another wrong patient story, or read Liz Szabo's source story in the Feb. 5, 2007 issue of USA Today.

Nobody was there to assist them: Dialysis errors

The chief medical examiner of Maryland has identified 24 kidney dialysis patients who bled to death, usually at home alone. And the Mid-Atlantic Renal Coalition, which oversees kidney programs in three states and the District of Columbia, knows of even more cases.

In dialysis, a life-saving treatment for kidney disease, a patient's blood is cycled through a machine that removes impurities and waste products. In most cases, doctors tap a vein in the arm or leg, creating a "vascular access site" or portal that can be used for years. Most of the people died after their access sites weakened from repeated use and finally leaked.

"Most of these people seemed to be alone at the time the bleeding occurred," the Medical Examiner said in an interview. "Nobody was there to assist them."

Dr. Jeffrey Fink, former chairman of the Maryland Kidney Commission, said he has never had a patient bleed to death, though one recently woke up in time to get help. "The patient had a hemorrhage and happened to wake up wet," he said. "Everybody I talked to has a few cases where this has happened."

Advice to dialysis patients: Get a friend or family member to check on you during dialysis, if possible. And get educational sessions about the proper care of your access sites and the signs of trouble.

Read another kidney story, or see Jonathan Bor’s article in the Baltimore Sun. Thanks to Helen Haskell for spotting this.

Art Buchwald's Choice: Hospice care

The well-known humorist Art Buchwald died on Jan. 17, after a year-long curtain call. He wrote a final newspaper column, excerpted here:

Now, to get down to the business at hand, I have had many choices concerning how I wanted to go. Most of them are very civilized, particulary hospice care. A hospice makes it very easy when you decide to go.

Everybody has his or her own opinion as to how you should go out. All my loved ones became very upset because they thought I should brave it out--which meant more dialysis. But here is the most important thing: This has been my decision. And it's a healthy one.

The person who was the most supportive in the end was my doctor, Mike Newman. Members of my family, while they didn't want me to go, were very supportive, too.

I chose to spend my final days in a hospice because it sounded like the most painless way to go, and you don't have to take a lot of stuff with you.

My mind keeps turning to food. I have not eaten all the eclairs I always wanted. I have found it hard to go past the Cheesecake Factory without at leave having one profiterole and a banana split.

I'd like to think some of my printed works will persevere--at least for three years--[maybe] it will wind up on a cereal box top.