From Newcastle Herald, Australia, by Helen Gregory
JILLIAN Bellamy had just completed her second obstacle course when she realised some other competitors were pushing beyond her one lap.
“I thought ‘I want to do that!’,” she said. “I want to still be on an obstacle course at midnight wearing nothing but a headlamp!”
Ms Bellamy, 28, got her wish and competed in her first 24 hour endurance event in 2016.
The Rutherford primary school teacher will compete against 400 participants on Saturday – when showers are forecast – in the globe’s first 24 Hour Enduro OCR World Championships, to be held at Dargle Farm outside of Sydney.
The event includes completing as many laps of an 11 kilometre course as possible in 24 hours.
The course has 30 obstacles, ranging from crawling, to climbing ropes and carrying weights.
“I really like all the rope climbing – I have a lot of lower body strength rather than upper body strength,” she said.
“But I also like all the full body work - running, jumping and pushing myself over the top of a wall or getting down and crawling between tyres and barbed wire.”
Ms Bellamy said her determination to push her body to its limits came from her desire to focus on what it is capable of, instead of her polycystic kidney disease.
She was 15 when she received a “bombshell” diagnosis of the inherited disorder, where clusters of cysts develop within the kidneys, causing them to enlarge and lose function over time.
She was told she would need blood pressure medication, regular blood tests, to see a specialist and consult a nutritionist to cut almost all processed food from her diet.
For now, she said, the only symptom she has is pain when one of the cysts bursts.
“Health and fitness is a big distraction from the disease,” she said.
“It keeps me in control of what my body can do. I love these challenges so much because one day I won’t be able to do them. I want to do them now – and I will do them now.”
Ms Bellamy is aiming to complete seven or eight laps in the event.
She’s been training at least two hours a day every day since January, when she received medical clearance for a hip injury.
“You don’t know what to prepare for until you’re out there,” she said.
“You can do as much training as you like but you don’t know what’s going to hit until you’re on the course.
“The first year it was minus five degrees.
“I only had one outfit and I thought my fingers were going to fall off.
The second year it was raining and I thought ‘Why am I doing this?’
“You start counting down the minutes till the sun comes up and thinking about when you can have a hot shower and food.
“But when you finish it’s the best feeling.
“You’re walking like a penguin and all you can do is laugh.
“You think ‘I love this pain – I’m coming back again’.”
Kidney Donors & Transplants
As John Nucci undergoes kidney transplant surgery today, advocates and doctors say there is a vital need for more donors — a cause the former city councilor says he will champion when he recovers.
Nucci, 66, of East Boston, was due to go under the knife early this morning at Massachusetts General Hospital alongside family friend Kerri Abrams, 37, of Arlington, who is donating one of her kidneys to him.
Nucci’s own kidneys are operating at just 2 percent due to his genetic polycystic kidney disease. He said yesterday he was confident as he prepared to go into surgery at Massachusetts General.
“They know what they’re doing,” Nucci said.
Dr. Elliot Heher, the medical director of MGH’s kidney donor team, said the number of people waiting for a kidney skyrocketed between 1998 and 2015 as advances in transplant medicine made getting a new kidney the ideal option rather than one of last resort.
“Now there’s absolutely no doubt that transplantation is preferred” to alternatives such as dialysis, Heher said. “It’s what we all would want for ourselves.”
The supply of kidneys, though, has not followed, Heher said. He said it’s remained relatively level for a couple of decades, so a gap has yawned between the supply and need for kidneys even though the spike in people looking for kidneys has plateaued since 2015. Some of the 83,978 on the list nationally may have to wait a decade for the organ.
Today’s surgery — removing a kidney from Abrams and transplanting it into Nucci, is expected to take three to four hours.
Typically, the operation involves doctors making a long incision on the side of each patient, according to the Johns Hopkins University.
The doctors usually have the kidney switch sides; if it comes from her right side, it will end up in his left, and vice versa. They do that because a flipped kidney allows the doctors better access to connecting all the internal tubes, according to Johns Hopkins.
Nucci said he’s hoping to be discharged as early as Friday.
Nucci said he plans on advocating for a law revision to change how people register as organ donors. He wants to make it so you have to opt out of being an organ donor rather than choosing to be one.
Nucci said he believes many people who aren’t registered as being possible organ donors in the event of their deaths would be just fine with someone making good use of their body parts after they’re gone.
“I was one of them,” Nucci said. He just recently had the Registry of Motor Vehicles put the little red heart on his driver’s license.
Paul Dooley, the head of a Canton-based organization called MatchingDonors.com that pairs up living donors and recipients, said as many as two dozen a day contact the nonprofit looking to donate a kidney out of the kindness of their hearts.
“It’s amazing — good people come forward,” Dooley said, adding that their motivations are often personal. “Someone lost a grandparent, they want to save a grandparent. Someone lost a nephew, they want to save a kid.”
Post Operation UPDATE
John Nucci says he already can feel his new kidney working.
“This great feeling just came over me after the surgery,” the former Boston city councilor said when reached by phone yesterday evening, as he recovered from Tuesday’s transplant surgery at Massachusetts General Hospital.
Nucci, 66, of East Boston, received a kidney from family friend Kerri Abrams, who volunteered to donate one of hers when she learned from a Herald article that Nucci was suffering from a rare genetic disorder and in dire need of one.
Surgeons at Massachusetts General Hospital carried out the procedure Tuesday over the course of a few hours, removing one of her kidneys and implanting it into Nucci.
Kidneys filter toxins out of the blood and produce urine. Nucci said the slow decline caused by his genetic polycystic kidney disease had left him chronically exhausted. Though he’s in some pain after the major surgery, Nucci said the strong new organ has swept all that away.
“It was like a fog had lifted,” Nucci said. “I forgot what it was like.”
Nucci said he’s hoping to be discharged sometime around this weekend.
Doctors 30 years ago diagnosed Nucci with the disease, which causes non-cancerous cysts to grow on a person’s kidneys until the organs ultimately fail. Nucci’s kidneys before the surgery were operating at 2 percent. Nucci inherited the condition from his father, who died from the illness at 64, and his three sons have all tested positive for the disease.
From Drexel University - Now, by By: Lauren Ingeno
Medicaid Expansion Under the ACA Increased Low-Income Patient Access to Kidney Transplants
After states expanded Medicaid to cover more low-income individuals under the Affordable Care Act (ACA), there was a significant boost in the number of chronic kidney disease patients with Medicaid coverage who were placed on the kidney transplant waiting list, according to a new study led by Drexel University researchers.
Medicaid expansion was associated with larger increases in Medicaid coverage among new listings of racial and ethnic minority patients compared to listings of white patients. This suggests that Medicaid expansion may have helped to curb racial and socioeconomic disparities in pre-dialysis chronic kidney disease care in the United States. The findings appear in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN).
More than 93,000 people are currently listed for a new kidney, according to the U.S. Department of Health and Human Services. While black and Hispanic Americans have higher rates of diabetes and high blood pressure than white Americans, putting them at risk for organ failure, historically patients who were white or had private health insurance were more likely to receive an organ transplant.
Kidney transplantation is more cost-effective and associated with better health outcomes than dialysis. Getting on the waiting list early can shorten the amount of time that kidney transplant candidates need to endure dialysis before getting a transplant, with average waiting times of five to seven years. However, access to the list is largely dependent on having health insurance coverage, and Medicare only provides a health insurance “safety net” for individuals without other insurance coverage after they start dialysis.
“The sooner you can get on the list, the sooner you may receive a transplant. However, before the ACA, the majority of patients who got on the waiting list before starting dialysis had private health insurance and were white, even though minorities are substantially more likely than white individuals to end up with late-stage kidney disease,” said the study’s lead author Meera Nair Harhay, MD, an assistant professor of medicine at Drexel University College of Medicine. “Given evidence that millions of low income and minority individuals gained insurance coverage by Medicaid expansion, I wondered whether Medicaid expansion was also changing the socioeconomic and racial makeup of the kidney transplant waitlist.”
January 1, 2014 marked the beginning of the full implementation of Medicaid expansion in the United States, when the federal government enhanced funding to states that elected to expand Medicaid to cover low-income adults at or below 138 percent of the federal poverty level. Using national data from the United Network of Organ Sharing database over a six-year period, Harhay and her colleagues compared trends in insurance types used for preemptive listings among U.S. states that did and did not expand Medicaid under the ACA. They also examined whether there was evidence of differences in insurance types used for preemptive listings of minorities compared to listings of white transplant candidates after Medicaid expansion
The researchers found that states that expanded their Medicaid programs experienced an increase in preemptive listings of Medicaid beneficiaries. States that fully implemented Medicaid expansion on January 1, 2014 had a 59 percent relative increase in Medicaid-covered preemptive listings (1,094 to 1,737 patients) from the pre-expansion (years 2011-2013) to post-expansion period (years 2014-2016), compared with an 8.8 percent relative increase among Medicaid non-expansion states. From the pre- to post-expansion period, the adjusted proportion of listings with Medicaid coverage increased by 3 percentage-points among expansion states and decreased by 0.3 percentage-points among non-expansion states.
“In states that did not expand Medicaid, millions of individuals with incomes too high to qualify for Medicaid and too low to receive subsidized private insurance remain uninsured,” the study authors write in their conclusion. “Given this coverage gap, it is uncertain if low-income individuals with chronic kidney disease in non-expansion states have had equivalent opportunities to accrue preemptive waiting time for kidney transplantation.”
The authors also found that in expansion states, the proportion of new black listings with Medicaid coverage increased by 4 percentage points, and the proportion of new Hispanic listings with Medicaid coverage increased by 5.9 percentage points, whereas the proportion of new white listings with Medicaid coverage increased by only 1.4 percentage points.
With respect to cost, the study authors note that U.S. spending for chronic dialysis currently exceeds 30 billion dollars per year.
“Policies, such as insurance expansion, that expand access to health care and kidney transplantation services for low-income patients could lessen the number of patients on dialysis and significantly reduce these costs,” said study co-author Ryan McKenna, PhD,an assistant professor at Drexel’s Dornsife School of Public Health. “Our study has shown that expanding Medicaid may provide a pathway to kidney transplantation for low income individuals with kidney disease,” Harhay said.
The study authors concluded that more research is needed to find out whether long-term transplant outcomes differ among candidates who were listed with expanded Medicaid coverage compared with those with other coverage options.
“This great feeling just came over me after the surgery,” the former Boston city councilor said when reached by phone yesterday evening, as he recovered from Tuesday’s transplant surgery at Massachusetts General Hospital.
Nucci, 66, of East Boston, received a kidney from family friend Kerri Abrams, who volunteered to donate one of hers when she learned from a Herald article that Nucci was suffering from a rare genetic disorder and in dire need of one.
Surgeons at Massachusetts General Hospital carried out the procedure Tuesday over the course of a few hours, removing one of her kidneys and implanting it into Nucci.
Kidneys filter toxins out of the blood and produce urine. Nucci said the slow decline caused by his genetic polycystic kidney disease had left him chronically exhausted. Though he’s in some pain after the major surgery, Nucci said the strong new organ has swept all that away.
“It was like a fog had lifted,” Nucci said. “I forgot what it was like.”
Nucci said he’s hoping to be discharged sometime around this weekend.
Doctors 30 years ago diagnosed Nucci with the disease, which causes non-cancerous cysts to grow on a person’s kidneys until the organs ultimately fail. Nucci’s kidneys before the surgery were operating at 2 percent. Nucci inherited the condition from his father, who died from the illness at 64, and his three sons have all tested positive for the disease.
After states expanded Medicaid to cover more low-income individuals under the Affordable Care Act (ACA), there was a significant boost in the number of chronic kidney disease patients with Medicaid coverage who were placed on the kidney transplant waiting list, according to a new study led by Drexel University researchers.
Medicaid expansion was associated with larger increases in Medicaid coverage among new listings of racial and ethnic minority patients compared to listings of white patients. This suggests that Medicaid expansion may have helped to curb racial and socioeconomic disparities in pre-dialysis chronic kidney disease care in the United States. The findings appear in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN).
More than 93,000 people are currently listed for a new kidney, according to the U.S. Department of Health and Human Services. While black and Hispanic Americans have higher rates of diabetes and high blood pressure than white Americans, putting them at risk for organ failure, historically patients who were white or had private health insurance were more likely to receive an organ transplant.
Kidney transplantation is more cost-effective and associated with better health outcomes than dialysis. Getting on the waiting list early can shorten the amount of time that kidney transplant candidates need to endure dialysis before getting a transplant, with average waiting times of five to seven years. However, access to the list is largely dependent on having health insurance coverage, and Medicare only provides a health insurance “safety net” for individuals without other insurance coverage after they start dialysis.
“The sooner you can get on the list, the sooner you may receive a transplant. However, before the ACA, the majority of patients who got on the waiting list before starting dialysis had private health insurance and were white, even though minorities are substantially more likely than white individuals to end up with late-stage kidney disease,” said the study’s lead author Meera Nair Harhay, MD, an assistant professor of medicine at Drexel University College of Medicine. “Given evidence that millions of low income and minority individuals gained insurance coverage by Medicaid expansion, I wondered whether Medicaid expansion was also changing the socioeconomic and racial makeup of the kidney transplant waitlist.”
January 1, 2014 marked the beginning of the full implementation of Medicaid expansion in the United States, when the federal government enhanced funding to states that elected to expand Medicaid to cover low-income adults at or below 138 percent of the federal poverty level. Using national data from the United Network of Organ Sharing database over a six-year period, Harhay and her colleagues compared trends in insurance types used for preemptive listings among U.S. states that did and did not expand Medicaid under the ACA. They also examined whether there was evidence of differences in insurance types used for preemptive listings of minorities compared to listings of white transplant candidates after Medicaid expansion
The researchers found that states that expanded their Medicaid programs experienced an increase in preemptive listings of Medicaid beneficiaries. States that fully implemented Medicaid expansion on January 1, 2014 had a 59 percent relative increase in Medicaid-covered preemptive listings (1,094 to 1,737 patients) from the pre-expansion (years 2011-2013) to post-expansion period (years 2014-2016), compared with an 8.8 percent relative increase among Medicaid non-expansion states. From the pre- to post-expansion period, the adjusted proportion of listings with Medicaid coverage increased by 3 percentage-points among expansion states and decreased by 0.3 percentage-points among non-expansion states.
“In states that did not expand Medicaid, millions of individuals with incomes too high to qualify for Medicaid and too low to receive subsidized private insurance remain uninsured,” the study authors write in their conclusion. “Given this coverage gap, it is uncertain if low-income individuals with chronic kidney disease in non-expansion states have had equivalent opportunities to accrue preemptive waiting time for kidney transplantation.”
The authors also found that in expansion states, the proportion of new black listings with Medicaid coverage increased by 4 percentage points, and the proportion of new Hispanic listings with Medicaid coverage increased by 5.9 percentage points, whereas the proportion of new white listings with Medicaid coverage increased by only 1.4 percentage points.
With respect to cost, the study authors note that U.S. spending for chronic dialysis currently exceeds 30 billion dollars per year.
“Policies, such as insurance expansion, that expand access to health care and kidney transplantation services for low-income patients could lessen the number of patients on dialysis and significantly reduce these costs,” said study co-author Ryan McKenna, PhD,an assistant professor at Drexel’s Dornsife School of Public Health. “Our study has shown that expanding Medicaid may provide a pathway to kidney transplantation for low income individuals with kidney disease,” Harhay said.
The study authors concluded that more research is needed to find out whether long-term transplant outcomes differ among candidates who were listed with expanded Medicaid coverage compared with those with other coverage options.
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