From Michigan Health, by KEVIN JOY
Organ and tissue donation from living people makes up about 4 of every 10 donations that take place each year. Kidneys are the most frequently donated organs from living people.
A person may give one of their two kidneys, which provide the necessary function to remove waste from the body.
Such donors fall into two groups, says Randall S. Sung, M.D., a Michigan Medicine transplant surgeon.
“They want to help somebody they care about — a family member, a co-worker, a friend or someone in their church,” Sung says. “And there also are people who want to do something good for a stranger. These are called nondirected donors.”
In either circumstance, the results can be life-changing, with little risk to the donor.
That was the case for 49-year-old Michigan Medicine patient Jeff Lewis, who in December 2000 gave a kidney to his older sister, Jacqueline Lewis-Kemp. He returned to work without incident a few weeks later.
“Your life goes back to normal,” says Lewis, who has written a book about his kidney donation experience. “But you will get the knowledge that you did something to save somebody’s life, and that will be with you forever.”
For recipients, success rates are high: About 1 percent of transplanted kidneys fail within the first month, Sung says. Two percent from living donors fail within the first year.
He spoke more about what the surgery entails:
Facts about kidney transplant
Why might someone need a new kidney?
Sung: It’s always as a result of end-stage renal disease. There are several common causes, including diabetes, hypertension and polycystic kidney disease. Those patients are either on dialysis or will soon need it.
When chronic kidney disease develops, it’s often asymptomatic. It isn’t until a person’s kidney disease is far advanced that they can get swelling, fatigue, nausea or loss of appetite. A patient may have difficulty breathing because their body gets overloaded with fluid because the kidneys aren’t getting rid of it effectively.
What are the benefits of receiving a kidney from a living donor?
Sung: There’s so much of an advantage. They last longer, and they also allow the recipient to be transplanted sooner, thereby avoiding the time they would have to be on the waiting list — which can be as long as eight years.
How does a living donor prepare?
Sung: The biggest step is education and making the decision to donate. There is an evaluation process that involves testing and in-person appointments with everyone on the team. But once a donor is approved, there’s really not a lot they need to do to prepare, other than stay healthy.
Any one person can usually have many compatible donors. It’s usually limited only by blood-type compatibility. Sometimes, there are variables like age or size — younger donor transplants tend to last a little bit longer, for example, and a transplant for a big recipient from a small donor may not last quite as long. But we don’t exclude someone from donating for those reasons.
How does the transplant operation work?
Sung: For both the donor and the recipient, the operation lasts roughly three hours. They typically come in at the same time — even though the operations are staggered. It takes much longer to remove the kidney than to prepare the recipient to implant it. The anesthesiologists put in a nerve block to assist with postoperative pain.
SEE ALSO: 7 Facts Everyone Should Know About Becoming an Organ Donor
Once the kidney is removed from the donor, it gets flushed with preservation solution and packaged in ice. Then it’s brought to the recipient in the operating room where it gets put in.
Do you remove the recipient’s existing kidney?
Sung: We rarely ever remove a kidney. That’s a common idea people have, which is very logical. People are always surprised to hear we don’t touch the recipient’s kidneys. The issue is not that they are causing harm; they’re just not functioning.
We put the transplant lower down in the pelvis. There are other advantages to having it in that location. Their native kidneys just sit there and don’t cause any trouble. It really winds up being a lot less surgery. So these people have three kidneys, pretty much.
Could you explain any associated risks?
Sung: The complication rate is very low for donors. But in the early phases, recovery is more difficult for them. That’s because of where the incision is located and also because the recipient is getting anti-rejection medications that also help with pain.
In terms of medical complexity and the complications, that’s much trickier for the recipient. For any operation of this type, there are risks of wound and bladder infection and blood clots. Bleeding is more common; a blood transfusion is not out of the question. Sometimes there are issues with the ureter, which is the part we attach to the bladder.
How does kidney transplant improve a recipient’s quality of life?
Sung: It can make a big improvement. One of the demonstrated advantages is not having to do dialysis anymore. Not only can dialysis be time-consuming and also tie people to where they live, but people might not feel great while doing it.
In general, people feel like they have more strength — and they usually notice it right away. It’s not uncommon for a recipient to wake up from a transplant, or a day later, to say: “I feel great.”
For more information or to register as an organ donor, visit the secretary of state’s office online.
Visit the University of Michigan Transplant Center to learn more about transplantation.
After years of waiting, Nathalie De received a phone call that she never expected to hear.
The Santa Clarita mother of four’s potential kidney donor was calling to confirm that she had passed all medical tests and was a positive match.
“I’m more at ease knowing that very soon, God willing, everything will be behind,” said De.
Sixteen years after being diagnosed with polycystic kidney disease, De is scheduled to receive a kidney transplant, escaping the extensive process of hemodialysis, a three-hour treatment she undergoes three times each week.
“I will be able to raise my sons and provide for my family by working, and also travel,” De said.
De, a widowed mother of four, met her match after KHTS Radio shared her story earlier this year, making this the third kidney match the radio station has facilitated.
Terri Miller, a local Santa Clarita resident, had never met De before, but when she saw a post on the KHTS Facebook page, she decided to meet up with De at the KHTS radio station in Old Town Newhall.
“When I first heard that someone wanted to give me a kidney, I was immediately drawn to meeting her,” De said. “It’s just something so major, and I just want to thank her for even going through the process.”
Miller told KHTS she was inspired to help another human being, regardless of if she had ever met the person before.
“I just felt very drawn to help her,” Miller said. “It was really on my heart to help her, and I called the radio station the next day. I found out she needed the help, so I started the process.”
Polycystic kidney disease is an inherited disorder in which clusters of cysts develop primarily within the kidneys, causing them to enlarge and lose function over time, according to Mayo Clinic.
In the United States, about 600,000 people have PKD, which is the fourth leading cause of kidney failure, according to the National Kidney Foundation.
There are currently 121,678 people waiting for lifesaving transplants in the United States. In 2016, 100,791 people were waiting for kidney transplants, according to the National Kidney Foundation.
Fortunately for De, there is now official confirmation that Miller can donate her kidney, and a surgery date has been scheduled for Aug. 1.
“After the surgery I want to find a way to make a difference, the way people have done for me,” De said.
In 2002, just after graduating from college and eager to realize her dreams of helping orphans in Ivory Coast, West Africa, she learned that her father had polycystic kidney disease.
De decided to donate one of her kidneys, only to find that she herself had inherited the disease.
“I went from feeling disappointed that I couldn’t help my father, to scared that my life was over, to fortunate to have found that out at an early stage, to scared again,” De said.
Every 14 minutes, someone is added to the kidney transplant list, according to the National Kidney Foundation.
De’s father never lost hope and always shared words of encouragement with his daughter, but he succumbed to the disease while waiting for a transplant.
During these 16 years, De married, became the mother of four boys and lost her husband to cancer, all while managing her health.
“There have been many twists and turns,” De said. “Looking at my sons playing or quarrelling has made the journey bearable.”
From Herald-Review, By Deanese Williams-Harris Chicago Tribune
People are using social media to improve their odds of finding organ donors: 'Doing it can save my life'
When Melanie Perry peers out the seventh-floor window of her Kenwood high-rise, she has a clear view of the helicopter pad at the University of Chicago Medical Center.
"It's as if God is telling me your kidney is in your view," she said. "God is keeping me. He can move mountains."
Perry, 34, has spent most of her life hoping for better days. When she was a girl, she was diagnosed with lupus, an autoimmune disease that claimed both kidneys. After her first transplant failed, her 16-year relationship with dialysis began. Every week, she undergoes three appointments, each up to three hours.
The grueling routine has saved her life, but it has also made it harder to get another transplant. After so many years of undergoing dialysis and receiving blood products, "I'm sort of like a melting pot, and that makes it hard to find a match," Perry said.
So she has turned to social media, hoping to reach as many people as possible willing to donate a kidney. "I'm emotionally drained," she said recently. "I'm afraid of not being able to get (a kidney). ... I'm afraid of having to live the rest of my life on dialysis."
Perry is not alone.
More than 8 million Americans suffer from chronic kidney disease, and about 450,000 of them are kept alive through dialysis. About 100,000 people are waiting for a kidney transplant, 300 of them near death, according to the Gift of Hope Organ and Tissue Donor Network. Just in Chicago, about 3,165 people are on the waiting list.
Most people in this country waiting for an organ transplant need a kidney. Next in line are those waiting for a liver, then heart, then lung. The wait for a kidney donation can be years, compared to weeks or months for a heart.
Organ donation via an app? Tinder is on board »Commentary: Why price heroism? Organ donors can save taxpayers millions. They deserve a break. »
Like Perry, more and more people are resorting to social media as medical advances make it increasingly possible for strangers to become living organ donors.
Facebook, for example, allows members to share their organ donor status and helps them register to become an organ donor. Several other online sites offer advice and help people either locate potential donors or register as one. They include WaitList Zero, the National Kidney Registry and the Alliance for Paired Kidney Donation.
An article this month in the journal Bioethics proposed Facebook-type platforms where people looking for living donors could post information about themselves.
"One can appeal to people by providing facts, figures, and impartial generalized reports," write Greg Moorlock and Heather Draper with the Warwick Medical School in England. "But something that prompts a stronger and immediate emotional reaction may be more effective at motivating them to provide a solution."
The authors worry that such networks could be abused by people who profit from "the underground organ market." But they argue that the benefits are still worth looking into. "Using 'identifiable victims' within a personalized approach to promoting donation may be an effective way to increase living kidney donation," they conclude.
The National Kidney Foundation also urges caution. "Be careful and use common sense," it says on its website. "Ask your transplant center for advice. Don't put yourself in a vulnerable situation where someone can try and take advantage of your situation. The issue of buying and selling organs may come up. This practice has been illegal in the U.S. since 1984, when it was outlawed by the National Organ Transplant Act."
Live donors -- like the son who donated a kidney to his father, Chicago police superintendent Eddie Johnson -- are key to reducing the long waiting list, according to Kevin Cmunt, CEO of the Gift of Hope Organ and Tissue Donor Network.
The network has overseen about 260 live donation transplants and its goal is 500 by 2020, Cmunt said. Reaching more strangers would help the group meet its goal.
"A person can function quite well and normally with one kidney," he said. "With education about live donation, we can make people comfortable with the process and hopefully lower the number of deaths each year."
Cmunt acknowledged that many in need of a kidney find it difficult to ask a relative or a friend, much less a stranger.
Perry said she had to get up the nerve to ask her family. When no one was a match, she finally went to Facebook.
She posted her status on Facebook and asked friends to get tested to see if they were a match to her. She also asked them to reach out to their friends. She posted her appeal in early March and has not found anyone yet.
Meanwhile, her situation is getting more urgent. Last year, tests showed that calcifications in her body -- abnormal accumulations of calcium salts -- were worsening.
The calcium buildup will eventually get to the point in which Perry will not be able to receive a new kidney, according to Dr. Yolanda Becker, surgical director of the kidney and pancreas transplant team at the University of Chicago Medicine. "Dialysis is a lifesaving procedure that cleanses the poison out of your body, but it's not natural," she said. "Eventually you get hardening of the arteries."
Perry has had other health issues. She spent most of April and parts of May in the hospital for digestive and stomach problems.
During all her struggles with end-stage kidney disease, Perry has managed to capture glimmers of hope.
She recently completed a business program. "I was a hermit before school, but I even made the dean's list," Perry said. "It was an experience."
Going to school opened her eyes to other possibilities. "I want to work. I love to do customer service," she said. "I want to travel and explore things."
But Perry hasn't dwelled on other dreams, such as getting married or starting a family. "I don't even bother dating. The guys in my age range are so immature," she said. "I don't want to deal with the heartbreak."
But who knows what might happen, she wonders, if someone finally calls her transplant team at the University of Chicago Medicine (773-702-4500) and asks about getting screened.
"I don't want anybody feeling sorry for me," Perry said. "If you don't want to do it, it's no pressure. But doing it can save my life."
People are using social media to improve their odds of finding organ donors: 'Doing it can save my life'
When Melanie Perry peers out the seventh-floor window of her Kenwood high-rise, she has a clear view of the helicopter pad at the University of Chicago Medical Center.
"It's as if God is telling me your kidney is in your view," she said. "God is keeping me. He can move mountains."
Perry, 34, has spent most of her life hoping for better days. When she was a girl, she was diagnosed with lupus, an autoimmune disease that claimed both kidneys. After her first transplant failed, her 16-year relationship with dialysis began. Every week, she undergoes three appointments, each up to three hours.
The grueling routine has saved her life, but it has also made it harder to get another transplant. After so many years of undergoing dialysis and receiving blood products, "I'm sort of like a melting pot, and that makes it hard to find a match," Perry said.
So she has turned to social media, hoping to reach as many people as possible willing to donate a kidney. "I'm emotionally drained," she said recently. "I'm afraid of not being able to get (a kidney). ... I'm afraid of having to live the rest of my life on dialysis."
Perry is not alone.
More than 8 million Americans suffer from chronic kidney disease, and about 450,000 of them are kept alive through dialysis. About 100,000 people are waiting for a kidney transplant, 300 of them near death, according to the Gift of Hope Organ and Tissue Donor Network. Just in Chicago, about 3,165 people are on the waiting list.
Most people in this country waiting for an organ transplant need a kidney. Next in line are those waiting for a liver, then heart, then lung. The wait for a kidney donation can be years, compared to weeks or months for a heart.
Organ donation via an app? Tinder is on board »Commentary: Why price heroism? Organ donors can save taxpayers millions. They deserve a break. »
Like Perry, more and more people are resorting to social media as medical advances make it increasingly possible for strangers to become living organ donors.
Facebook, for example, allows members to share their organ donor status and helps them register to become an organ donor. Several other online sites offer advice and help people either locate potential donors or register as one. They include WaitList Zero, the National Kidney Registry and the Alliance for Paired Kidney Donation.
An article this month in the journal Bioethics proposed Facebook-type platforms where people looking for living donors could post information about themselves.
"One can appeal to people by providing facts, figures, and impartial generalized reports," write Greg Moorlock and Heather Draper with the Warwick Medical School in England. "But something that prompts a stronger and immediate emotional reaction may be more effective at motivating them to provide a solution."
The authors worry that such networks could be abused by people who profit from "the underground organ market." But they argue that the benefits are still worth looking into. "Using 'identifiable victims' within a personalized approach to promoting donation may be an effective way to increase living kidney donation," they conclude.
The National Kidney Foundation also urges caution. "Be careful and use common sense," it says on its website. "Ask your transplant center for advice. Don't put yourself in a vulnerable situation where someone can try and take advantage of your situation. The issue of buying and selling organs may come up. This practice has been illegal in the U.S. since 1984, when it was outlawed by the National Organ Transplant Act."
Live donors -- like the son who donated a kidney to his father, Chicago police superintendent Eddie Johnson -- are key to reducing the long waiting list, according to Kevin Cmunt, CEO of the Gift of Hope Organ and Tissue Donor Network.
The network has overseen about 260 live donation transplants and its goal is 500 by 2020, Cmunt said. Reaching more strangers would help the group meet its goal.
"A person can function quite well and normally with one kidney," he said. "With education about live donation, we can make people comfortable with the process and hopefully lower the number of deaths each year."
Cmunt acknowledged that many in need of a kidney find it difficult to ask a relative or a friend, much less a stranger.
Perry said she had to get up the nerve to ask her family. When no one was a match, she finally went to Facebook.
She posted her status on Facebook and asked friends to get tested to see if they were a match to her. She also asked them to reach out to their friends. She posted her appeal in early March and has not found anyone yet.
Meanwhile, her situation is getting more urgent. Last year, tests showed that calcifications in her body -- abnormal accumulations of calcium salts -- were worsening.
The calcium buildup will eventually get to the point in which Perry will not be able to receive a new kidney, according to Dr. Yolanda Becker, surgical director of the kidney and pancreas transplant team at the University of Chicago Medicine. "Dialysis is a lifesaving procedure that cleanses the poison out of your body, but it's not natural," she said. "Eventually you get hardening of the arteries."
Perry has had other health issues. She spent most of April and parts of May in the hospital for digestive and stomach problems.
During all her struggles with end-stage kidney disease, Perry has managed to capture glimmers of hope.
She recently completed a business program. "I was a hermit before school, but I even made the dean's list," Perry said. "It was an experience."
Going to school opened her eyes to other possibilities. "I want to work. I love to do customer service," she said. "I want to travel and explore things."
But Perry hasn't dwelled on other dreams, such as getting married or starting a family. "I don't even bother dating. The guys in my age range are so immature," she said. "I don't want to deal with the heartbreak."
But who knows what might happen, she wonders, if someone finally calls her transplant team at the University of Chicago Medicine (773-702-4500) and asks about getting screened.
"I don't want anybody feeling sorry for me," Perry said. "If you don't want to do it, it's no pressure. But doing it can save my life."
Dialysis Lawsuits
The agreement, announced Monday, ends a two-year legal battle between American Renal Associates, one of Beverly's largest employers, and UnitedHealth Group, the country's largest health insurer.
UnitedHealth filed a lawsuit in July 2016 claiming that American Renal convinced kidney dialysis patients in Florida and Ohio to switch to commercial health insurance plans, even though their dialysis treatments were already covered by Medicare or Medicaid.
Commercial insurance reimburses companies as much as $4,000 for out-of-network treatments, significantly higher than the $200 to $300 paid by Medicare or Medicaid for the same treatments, the lawsuit said.
At the time, American Renal Associates released a statement saying the suit was “without merit,” and that it intended to “vigorously defend" itself in the lawsuit.
As part of the settlement, the two companies entered into a three-year agreement to provide patients with UnitedHealth insurance with "more cost-effective, in-network" access to all of American Renal's dialysis clinics.
American Renal Associates operates 228 dialysis clinics in 26 states and treats about 15,700 patients with end-stage kidney disease each year. It is located at Cummings Center and employs about 400 people in Beverly, 700 in Massachusetts and 4,000 across the United States.
Officials from American Renal declined to comment on the settlement. The two companies released a joint statement saying they were pleased with the resolution and "look forward to building a more cooperative relationship that enables us to collaborate on high-quality care for dialysis patients." American Renal did not admit to any wrongdoing as part of the settlement.
5 years to pay
According to a filing with the Securities and Exchange Commission, American Renal will pay UnitedHealth Group $32 million in five installments over five years, beginning with a $10 million payment on Aug. 1.
The agreement marks the second time American Renal has settled a lawsuit over the alleged insurance scheme. In February, the company agreed to settle a shareholder class-action lawsuit for $4 million. That suit said the alleged fraud caused shares in the company to plummet.
According to the United HealthCare lawsuit, American Renal persuaded patients to switch to commercial insurance by agreeing to pay their co-pays and deductibles. The company would also connect patients with the American Kidney Fund, which would pay the patients' private insurance premiums. The suit alleged the scheme violated anti-kickback laws because the American Kidney Fund's premium assistance program was funded by earmarked donations from American Renal Associates.
The UnitedHealth lawsuit also said American Renal intentionally failed to tell patients that the foundation's premium assistance program was only available for patients receiving dialysis. If the patients sought to cure their condition through a kidney transplant, they would be ineligible for premium assistance, the lawsuit said.
Patients also risked being stuck with the co-pays and deductibles because there was no guarantee that doctors and other providers would go along with the scheme, the lawsuit said.
In January 2017, American Renal reported in an SEC filing that it had received a subpoena from the U.S. Department of Justice requesting information related to its interactions with the American Kidney Fund.
Without telling the independent doctors rounding in its clinics, DaVita signed a multi-year contract with a company called Fresenius to begin using — for the first time — the dialysis solution GranuFlo in hundreds of its clinics. DaVita did so even though its vice president testified under oath that GranuFlo had no clinical benefit; it was just cheaper.
Fresenius repeatedly told DaVita that GranuFlo would add 8 units of a chemical called acetate to the dialysis solution. The liver converts acetate into bicarbonate, something the patient’s doctor already prescribes. Patients treated with GranuFlo thus receive two doses of bicarbonate. Fresenius told DaVita that before using GranuFlo, DaVita needed to tell kidney doctors and adjust the bicarbonate prescriptions to avoid a double dose. DaVita’s own vice president of biomedical operations agreed. DaVita knew that high bicarbonate levels can cause cardiac arrest and stroke.
What did DaVita do to mitigate those risks? Nothing. It switched to GranuFlo without telling the treating doctors, despite knowing that the patients would get more bicarbonate than the doctor prescribed. The reason DaVita acted this way was clear: Treating doctors would have rebelled had they been told that DaVita was using GranuFlo just to save money, with no clinical benefit and, for patients like ours, a 600 percent to 800 percent increase in the risk of cardiac arrest, according to the evidence admitted. Even when GranuFlo was recalled, DaVita did nothing except assure doctors it had observed no adverse events. Unsurprising, as DaVita wasn’t monitoring for adverse events and couldn’t even say which patients got GranuFlo.
The plaintiffs’ case is not speculation. It is mainstream science, has been adopted by the FDA and is incorporated into the GranuFlo warning label. The supposedly “peer reviewed” science that Dr. Nissenson relies upon was, after being rejected by five other journals, published in an Egyptian-based pay-to-publish kidney journal (with an independent rating of 0) many years after the events of this case. We challenge Dr. Nissenson to show The Denver Post a single document showing that before switching to GranuFlo, he saw any peer-reviewed science disproving the well-established connection between high bicarbonate and cardiac arrest.
DaVita’s culture of indifference starts at the top. Kent Thiry has been its CEO for almost 20 years, yet he testified he knows nothing about the role of bicarbonate in dialysis. DaVita’s claim that suits like this drive up the cost of doing business is an insult to the jury and the public. Perhaps if Dr. Nissenson focused more on medicine and less on the “cost of doing business,” our clients’ loved ones would still be alive and others would not be at risk. DaVita’s unrepentant attitude will ensure that the next jury sends an even louder message.
Rob Carey is an attorney and partner at Hagens Berman Sobol Shapiro. Stuart Paynter is an attorney and founder of The Paynter Law Firm.
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