A domino kidney transplant: Life imitating art imitating life

In a 2008 episode of ABC's TV show, Grey's Anatomy, Dr. George O'Malley is involved in a possible 6-way kidney donation, called a domino transplant.  That may have been based on a true story, as the first such transplant had been performed 20 years earlier.  Katelyn Rankin-Woeste saw that episode and filed it away in her  mind.

Three years later, she learned that Vincent, a five-year-old boy in her family's social circle, needed a kidney.  She told Vincent's mother that she was interested in being a donor, if she was found to be an appropriate match for him.   The mother gave Katelyn the phone number at Cincinnati Children's Hospital, not really expecting that Katelyn would really carry it through, as only two people outside the family had done so.  The hospital staff found Katelyn's kidney was indeed an appropriate match for Vincent.  

Katelyn searched in the website Cincinnati.MD [now larger, known as YourCity.MD], and found an excellent local surgeon.  She had used the same website to find an ObGyn doctor a few years before.  Her kidney donation surgery occurred this morning, May 15.  

  

Vincent's insurance will pay for the bulk of her medical expenses, but she has been paying substantial co-payments herself.  Donations to defray her costs can be sent to Charities MD Katies Fund, 209 S. West Street, Mason, Ohio 45040.

Advice:  Be like Katelyn, and pray that if you ever need a kidney, someone like her will be there for you.

Read about other acts of heroism in Chapter 11 of my book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment [e-book]. Thanks to Katelyn and Joe Benza for interviews, and to Joelle Caputa of CPR Communications for connecting us.

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.

A healthcare Catch-22: Kidney transplant for a homeless man

Pedro Cendeno Lora, age 47, had come to the U.S. in 1995 from the Dominican Republic, and had lived here quite happily for most of that time.

But he knew something was wrong when he became too tired to keep going to work. In late 2006, his lethargy was attributed to kidney failure; by then, he was out of work, and struggling to hang onto his rooming house in Dorchester, Massachusetts. Doctors told him he needed a kidney transplant. But in an all-too-common American healthcare Catch-22, he couldn't work because of his health, and he couldn't qualify for a transplant while in danger of losing his home.

He was running out of time when Health Care for the Homeless and Boston Medical Center came together last year to save him, in two ways. First, they searched for a donor, and realized his younger brother could donate a kidney. Second, Health Care for the Homeless helped him catch up on his rent so he could have a home to recuperate in.

The transplant was performed at Boston Medical Center. Pedro and his brother were able to stay at Barbara McInnis House for the homeless for the week before to prepare for the surgery, and for a month afterward.

"America saved me," he says.

Advice: Work to expand the safety net so it's there if and when you're out of work.

Read another story about a brother’s kidney donation.

Thanks to Adrian Walker for the source article in the Boston Globe of Dec. 9.

A badge of honor: Kidney donation

Minnesota native Anthony Thein didn't hesitate back in 1967 when doctors asked him to donate a kidney to his ailing brother. "If you think it might help somebody survive, you say, 'Yes, of course,'" Thein says.

But kidney transplants from living donors were still uncommon in the late 1960s, and the operation carried risks for both parties. Doctors didn't know whether living with just one kidney could entail long-term medical repercussions.

"Yeah, we really did something crazy 42 years ago," Anthony says today.

Perhaps not. Researchers report in today's New England Journal of Medicine that people who donate a kidney have about the same probability of survival over several decades as people in the general population. And donors seem to have adequate kidney function and even less risk of severe kidney disease than occurs in the general public, nephrologist Hassan Ibrahim of the University of Minnesota and his colleagues report.

To arrive at these findings, the researchers pored over a database of kidney transplants performed at the University of Minnesota between 1963 and 2007 and tried to reach as many of the donors as possible. Using this data and death records from the Social Security Administration, the scientists were able to asses the mortality rate among 3,698 people who gave away a kidney within that time span.

The survival curves of these donors and the general public are close, even favoring the donors slightly. And the rate of end-stage renal disease, which necessitates dialysis and can put a person on a waiting list for a new kidney, was lower among the donors than in the general population.

The researchers also randomly selected 255 of the donors to undergo kidney function tests between 2003 and 2007. The team compared those results against tests done on a group of people who had both kidneys and who matched the donors in race, gender, body weight and age.

An analysis showed the donors had acceptable measures of basic kidney functions and even outperformed the control group on blood pressure measurements, says Ibrahim.

Self-reported information suggested the donors had a slightly better overall quality of life than people in the general population.

To be eligible to donate a kidney, a person must pass a physical examination and cannot have diabetes, high blood pressure or other serious ailments.

With that in mind, it's not surprising that kidney donors would have good mortality rates and better health-related quality of life than people in the general population, say physicians Jane Tan and Glenn Chertow of Stanford University School of Medicine, writing in the same NEJM issue. "Nevertheless," they note, "it is somewhat surprising and quite reassuring that rates of end-stage renal disease were also lower in kidney donors than in the general population."

These broader findings have been reflected in a personal way in Anthony Thein's life. Now 70 and semiretired, Thein says he hasn't encountered any problems from lacking a kidney, although he does sport a sizable scar across his midsection — a testament to being among the earliest donors. Donors' scars today are much smaller.

"Actually, I'm proud of my scar," he says. "It's sort of like a badge of honor."

Advice: Consider kidney donation.

Read the appeal of a woman with kidney disease for a kidney donor. Thanks to Nathan Seppa for his article yesterday in Science News, reprinted here.

I am determined to have a future: Seeking a kidney

My name is Beth Abramowitz and I am 33 years old. I am married to a loving husband and together we have a wonderful and energetic four-year old son named Adam and a newborn daughter named Olivia. We live in Scarsdale, New York.

After the birth of my son Adam we learned that I had kidney disease. The disease has progressed over the years and we are now at a stage where it has become necessary to begin to plan for a kidney transplant. Our hope is that this transplant will enable me to continue me to live a normal and healthy life and enjoy many more happy years with my family. I have so much to live for and I am determined to have a future with my husband, son and newborn daughter.

Please contact me [at this web site] if you or someone you know is interested in considering the donation of a kidney. A potential donor needs to be under the age of 60 and have Type O (O+ or O) blood. I would be extremely grateful to anyone who might consider helping us.

Thank you.

Beth


Advice to those needing an organ replacement: Consider publicizing what you need on your own web site, like Beth.

Read a kidney exchange story.

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.

An armed guard told him his kidney had been removed: Theft ring for kidney transplants

As the anesthetic wore off, 25-year-old Naseem Mohammed said, he felt an acute pain in the lower left side of his abdomen. Fighting drowsiness, Naseem, a day laborer, fumbled beneath the unfamiliar green medical gown and traced his fingers over a bandage attached with surgical tape. An armed guard by the door told him that his kidney had been removed.

He was the last of about 500 Indians whose kidneys were removed by a team of doctors running an illegal transplant operation, supplying kidneys to rich Indians and foreigners, police officials said. A few hours after his operation last Thursday, the police raided the clinic and moved him to a government hospital. He has been recuperating in a Gurgaon hospital.

He had had no idea that it was possible to sell a kidney. He had been picking up odd jobs in Delhi for the past two years and had been sending money to his family in Gujarat.

Two weeks ago, he was approached by a bearded man as he waited at the early-morning labor market by the train station. The man offered him a generous deal: six weeks of painting work, with free food and lodging. He was driven four or five hours, to a remote bungalow, where he was placed in a room with four other young men, under the watch of two armed guards.

"When I asked why I had been locked inside, the guards slapped me and said they would shot me if I asked any more questions," he said. The men were given food to cook and periodically nurses would take blood samples. One by one, they were taken away for operations.

"They told us not to speak to each other or we would pay with our lives," he said. "I was the last one to be taken."

Advice to people needing a kidney: Explore kidney sharing, as described here recently.

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

Thanks to Amelia Gentleman for the source article in the Jan. 30 issue of the New York Times.

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.

Her Only Kidney: A drug error lawsuit

Tiffany Phillips had been born with only one kidney. She had a kidney transplant, and was discharged from the hospital to her home in South Carolina. The hospital’s doctors hoped the prescription they wrote for prednisone would keep her body from rejecting her new kidney. The medicine was not in stock at the Eckerd pharmacy, so the pharmacist there called a pharmacist at CVS. The pharmacist saw an alert on the CVS computer, but overrode the alert, and filled the prescription. Unfortunately, the pharmacist had dispensed the prednisone in 1,250 milligram doses rather than 250 mg doses, and the young woman took a five-fold overdose.

She was soon hospitalized and again is needing a new kidney, her lawyer said. Unfortunately, the mistake has left her with few alternatives. After taking too much of the steroid, she is unable to use dialysis. And she cannot have another kidney transplant. The error has reduced her life expectancy. The judge and jury considered that in awarding her an $8 million judgement against the pharmacy. The jury found the pharmacies 90% responsible. They found Tiffany 10% responsible because she had not noticed the correct dosage on her hospital discharge papers.

Advice to pharmacies: Require pharmacists to document their reason for an override of a computer alert, to discourage overrides. Require the approval of a second pharmacist to override computer alerts for medications for fragile patients, e.g., those who have just received organ transplants.

Advice to patients and advocates: Carefully verify the medicine label against the hospital discharge prescription.

Read another story of a drug error lawsuit, or read more about this one in Taylor Bright's newspaper story.