New Rules for Kidney Allocations in 2014

Allocating Kidneys

From SFGate, San Francisco, CA, by Victoria Colliver

New rules for kidney allocations

When it comes to kidney transplants, it will soon no longer be first come, first served.

New rules, which go into place this year, will change the way kidneys from deceased donors are allocated across the country and hopefully balance out wait times for those who need one and improve their long-term survival.

Currently, a young kidney might go to someone with a very short life expectancy. If a kidney is found for someone who has antibodies that make finding a match extremely difficult, it may not matter. Someone else higher on the list will get the kidney, even someone without those complicating factors.

Someone in need of a transplant may get a kidney sooner or later, depending on the region where the patient lives.

"Right now it's just a hodgepodge," said Dr. William Bry, surgical director of the kidney transplant program at California Pacific Medical Center in San Francisco. "There's nothing to prevent a perfect kidney from a 16-year-old from going into a 78-year-old person with diabetes and heart disease."

Available kidneys for transplant are scarce, but the current rules put too much emphasis on the amount of time a patient has spent on the waiting list, said Bry, who served on a committee that helped develop the new criteria.

"There's certainly an ethical argument for the person waiting the longest to have their shot next," he said. "But in terms of limited resource, it makes more sense to get as many years out of that limited resource that we can."
Thousands waiting

More than 96,000 people in the United States are waiting for kidney transplants, and about 10 percent of them are expected to die as they wait.

The region that includes the Bay Area has among the longest wait times for kidneys in the United States - five to seven years, according to the California transplant Donor Network, which manages organ and tissue donation in Northern California - excluding the Sacramento area - and parts of Nevada. Regions diverse in race and ethnicities tend to have longer wait times.

It's been a decade since the federal government directed the United Network for Organ Sharing, the agency that oversees the transplant network nationwide, to make the changes.

Certain factors make kidney donation and transplantation different from that of any other organ. For example, dialysis, an artificial process that replaces some kidney functions such as waste removal and fluid removal, has been available to kidney patients for decades.

"So the sense of urgency was never there," Bry said. "Dialysis may not be a great option, but it can keep you alive."
The donors

A kidney transplant patient can also receive an organ from a living donor if they're fortunate enough to have a match. Unlike most other transplantable organs, people have two kidneys and can get by on one.

Still, the vast majority of transplanted kidneys come from deceased organ donors, and there just aren't enough to go around.

"We're trying to make a system that does not alter the priority people already have, but provides better benefit for the people who need it most," said Joel Newman, spokesman for the United Network for Organ Sharing.

One the bigger changes involves better matching the life expectancies of patients with the age and quality of the donated kidney.

Kidneys will still be available to older patients, but the change is designed to give younger patients the organs that are expected to last the longest. [Read more]

Fighting PKD

From Ionia Sentinel-Standard, Lake Odessa, Michigan, by Mattie Cook

Lake Odessa man fights kidney disease

Cris Male, a welder and father of four, suffers from polycystic kidney disease (PKD), a condition which requires him to spend nine hours each week undergoing dialysis.

Although Male was born with this condition, it did not begin affecting him until his early 50s.
Male's mother, as well as three of his four siblings, have been affected by PKD. His mother and twin brothers Carl and Curt have received kidney transplants, whereas Cris and his sister Dorean are on a waiting list.
"It's something I was born with, but I'm glad it waited until I was in my 50s to start affecting me," Male said.
Male, along with his wife Julie, inherited land and a home in Lake Odessa from her family. After living in North Carolina for nearly a decade, the couple decided to move back to the Lakewood area and start a family.
After years of unsuccessfully trying to have a baby, the Males decided it was time to become foster parents.
"We have a big house and we needed some kids to fill it up. We had two dogs, but we wanted the kids, too," said Male.
The couple fostered twins Austin and Adam for a year before adopting the then-six-year-old boys. A few years later, the couple adopted their son Malachi, who was just two days old at the time. Malachi's biological sister Gracie has also been adopted by the Males.
"We got Gracie when she was just five days old. Malachi and Gracie have the same mom, and she wanted Gracie and Malachi to be together," said Julie Male.
With four kids, two dogs and a home to take care of, Julie Male quit her job as a bus driver for Lakewood Area Schools and began focusing on taking care of her family. Cris Male has worked as a full-time welder for Bradford White in Middleville for 16 years.
"Bradford White understands and they're really supportive of everything I need to do," said Cris Male.
Cris Male works everyday, but on Mondays, Wednesdays and Fridays, leaves work early to receive dialysis at DaVita in Ionia.
"Cris Male goes about his normal routine every day; an incredible challenge given that he works full-time and goes to dialysis treatment three times a week for three hours - essentially, a part-time job to stay alive," said DaVita Communications member Justin Forbis.
After three years of receiving dialysis treatment, Cris Male does not let his situation change his positive outlook on life. [Read more]

Kidney Transplants

From DNAIndia.com, by Santosh Andhale

Mumbai all set for India's biggest domino kidney transplants

Saturday's medical exercise will involve 12 patients, 12 urologists, 6 vascular surgeons, 24 assistant surgeons, 5 nephrologists, 6 assistant nephrologists, 12 anaesthetists, 24 nursing staff, and 12 OTs.

The nation’s biggest domino kidney transplants will take place in the city on Saturday.
Six people will donate a kidney each to six others. Neither the donors nor the recipients are related to each other. The state government authorisation committee gave the final nod for the serial surgeries on Thursday.

The biggest domino transplants, involving 30 pairs, were done in the US.

The last domino transplants consisting of five donors and five recipients were held on June 25, 2013, in Mumbai. Saturday’s transplants will be carried out across Bombay, Hiranandani and Hinduja hospitals. The medical exercise will involve 12 urologists, six vascular surgeons, 24 assistant surgeons, five nephrologists, six assistant nephrologists, 12 anaesthetists, 24 nursing staff, and 12 operation theatres.

For a transplant, it is necessary that blood and tissue of a donor and recipient match. When they don’t, the domino procedure is followed — the donor of one pair donates a kidney to the recipient of another pair (they are unrelated to each other). The transplant is then carried out in a series till the last donor in the chain donates to the first recipient in the lineup. Legal issues are involved in organ donation cases when the donor and recipient are not related to each other.

Dr Vishwanath Billa, nephrologist, Bombay Hospital, and coordinator of Saturday’s domino transplants, tolddna on Thursday: “The success of the earlier procedure has set a precedent. It encourages people to opt for it as it reduces a patient’s waiting time for the organ. We are thankful to the state government for speeding up the process. We have got all legal permissions from the government.”

For a transplant, the blood and tissue of a donor and recipient must match. In the case of one of the recipients, Manish Yashwantrao, his father was ready to donate a kidney but there was a mismatch in blood group. Manish’s blood group is O, his father’s A. Doctors advised Manish to register with the Apex Swap Transplant Registry (ASTRA), which addresses the issue of mismatch in blood groups or tissue among those who come for a transplant. [Read more]

Dialysis Issues

From MedicalXpress.com

Sickle cell trait in African-American dialysis patients affects dosing of anemia drugs

The presence of sickle cell trait among African Americans may help explain why those on dialysis require higher doses of an anemia medication than patients of other ethnicities, according to a study appearing in an upcoming issue of the Journal of the American Society of Nephrology (JASN). Additional studies are needed to determine the long-term health consequences of this increased dosing.

Sickle cell trait represents the carrier state of sickle cell disease and is present in roughly 6% to 8% of African Americans. In sickle cell disease, individuals have two copies of a genetic mutation that produces an abnormal change in hemoglobin, the primary molecule that carries oxygen in the blood. This change can lead to severe anemia and abnormally shaped red blood cells that can block the flow of blood, causing organ damage. Generally, sickle cell trait (when only one copy of the mutation is present) is thought to be benign, but kidney abnormalities have been reported in some affected individuals.

Studies have also shown that African Americans with kidney failure require higher doses of medications to treat anemia during dialysis. Could the presence of sickle cell trait among African Americans play a role?

To investigate, Vimal Derebail, MD, MPH (University of North Carolina at Chapel Hill / UNC Kidney Center) and his colleagues examined laboratory and clinical data over six months in 2011 concerning 5319 adult African-American hemodialysis patients.

Patients with sickle cell trait received about 13% more of the medications used to treat anemia than other patients to reach the same level of hemoglobin. The investigators also found that sickle cell trait was slightly more common among dialysis patients, present in 10% of study participants compared with 6.5% to 8.7% in the general African-American population.

The findings suggest that the presence of sickle cell trait may explain, at least in part, prior observations of greater doses of anemia medications administered to African-American dialysis patients relative to Caucasian patients. [Read more]

From ABC27.com, Harrisburg, PA by Al Gnoza

Woman in danger of missing dialysis treatments

A Susquehanna Township woman says changes in the federal health care law are making it very difficult for her to get life-saving treatments.

DeAna Cornelius is suffering from renal failure and is waiting for a kidney transplant. In the meantime, she has been going for dialysis treatments three times a week.

Problems with her legs have made it difficult for DeAna to walk. That along with the fact that she weighs 500 pounds makes it necessary for DeAna to be taken by an ambulance and EMS workers to her dialysis.

But because of changes in the health care law, her insurance company has stopped paying for the ambulance. DeAna can't afford it out-of-pocket.

"They really help me," she said. "I just can't do it by myself."

"I spoke to the nurse," she said. "She had concerns about me falling and she didn't say not come. She just strongly recommended that I didn't try to come on my own."

DeAna has considered using CAT's Share a Ride, but she says the ride schedule would make for a 13-hour day. In the meantime, she is left to hope the insurance company grants her appeal and reverses its decision.

"I'm going to still fight," she said. "I have my bad days. I have my bad days and I want to give up. But I can't do that and I'm going to fight."

From TheTelegram, St. John, Nova Scotia, Canada, Transcontinental Media

Lack of dialysis unit in Bonavista forced life-changing decision for woman

Former Bonavista resident Tammy Fry has been unable to get home from St. John’s to spend Christmas with her family for two years. She says the burden of being away from a dialysis unit for several days is not worth the effort.

Fry was in her late 20s when she became very ill in May, 1998. She was taken to Grace General Hospital in St. John’s and began dialysis the same day.

At the time, Clarenville did not have a dialysis unit and she spent six weeks on hemodialysis before insisting on doing home (peritoneal) dialysis because she did not want to leave her friends, family and job to move to St. John’s.

She had a tube placed in her stomach for hemodialysis; and the process required a lot of equipment, requiring a lot of storage. She luckily had space at her parent’s place to hold the equipment.

She was doing peritoneal dialysis, a treatment for patients with severe chronic kidney disease, four times a day.

“I eventually had to do it in the middle of the night. I had a close friend who would stay with me and she would set her alarm and hook me up to my fluid in the middle of the night while I was still sleeping,” says Fry.

Then she acquired a machine to do it automatically at night. Soon after that, she travelled to Halifax for a kidney transplant. After coming home, her doctor told her she had only 40 percent kidney function, even after the transplant. They said she would be lucky if she got six months out of the kidney.

“I was always on pins and needles wondering when I would have to start dialysis again, and because I got so ill at the end of doing peritoneal dialysis before, I figured for sure I was going to end up being in St. John’s,” she says.

Fry began trying to wrap her head around the option of moving to St. John’s. She had been working at a pharmacy in Bonavista. Her doctor at the time recommended she change careers because the long hours of standing were not good for her.

“Because of my situation I was always retaining fluid from standing on my legs. The doctor said to go back and get retrained and get a desk job,” says Fry.

Following her transplant, she continued to work for six months as a pharmacist before leaving in May, 2000, to move to St. John’s to go back to school to train for office administration. Following the two-year program she got a job in St. John’s.

Her kidney transplant, which doctors predicted would only last her six months, ended up lasting 8 1/2 years.

Then, in September, 2007, she had to start dialysis again.

Though it’s been more than a decade since she moved to St. John’s, Fry still thinks about how her life would have been had she not had to relocate. [Read more]

From ABC.net, Australia, by Caroline Winter

Permanent dialysis pledged for APY Lands

As the incidence of chronic kidney disease in remote Indigenous areas continues to rise, so too do the number of families being torn apart. Many patients in South Australia's north have to leave home permanently, to get renal dialysis in larger cities and towns, but the State Opposition has unveiled an election promise to establish dialysis facilities in the most remote of communities. [Read more]