From Eagle-Tribune, North Andover, MA, By Zoe Mathews
It popped up almost two weeks ago, when RuthEllen "Kiki" Bernard was out of town. Her husband, Wayne Bernard, called her to tell her he was putting a sign up out front of Common Grounds Cafe, the family business.
"I wanted to pique people's interest, sort of half out of humor and half seriously," he said.
Kiki Bernard has a genetic kidney disease called polycystic kidney disease that causes cysts in her kidneys to swell until they eventually shut down the organ's ability to function. More than 600,000 people in the country have the disease, which is the fourth leading cause of kidney failure according to the National Kidney Foundation.
Within the past year, Kiki's kidneys have taken a turn for the worse.
"I found out six months ago that my kidneys are functioning at 20 percent," she said.
The sign is the couple's way of asking for help. Without a transplant, Kiki Bernard faces dialysis treatment or kidney failure and further health complications due to the disease.
"I have a hard time asking for sugar," she said. "This is a whole other level."
The couple are no strangers to the trials and emotional traumas of sickness. Both their prior spouses died of cancer. They began dating eight years ago, got married last summer, and now live in Haverhill. Kiki Bernard is a retired school teacher in Rochester, New Hampshire, and Wayne Bernard runs the cafe that has been in his family since 1939.
Polycystic kidney disease is hereditary. Kiki's mother and sister both had it, and her daughter is living with it. There is no cure.
Kiki found out she had the disease when her mother was diagnosed, about 30 years ago. When doctors said her kidney function was declining at a more rapid rate half a year ago, she began the process of getting on the transplant list. She has been working with doctors from Tufts Medical Center in Boston.
"A year or two is what she's got with these kidneys," Wayne said. According to her doctor's prognosis, at some point in the near future she will have to go on dialysis.
The average waiting time for a kidney transplant is anywhere from three to five years, but Kiki said she won't be matched as quickly as others because she has Type O blood. That blood type is the universal donor, but people with Type O blood can only receive organs from other people with Type O blood.
"The cadaver list is six to eight years for an O," said Wayne, referring to the deceased donor list.
The couple put the sign out front of Common Grounds in the hope they might find a living donor – it is possible to live with one kidney, and there are benefits for a recipient accepting a kidney from a living donor.
According to the National Kidney Foundation, a kidney from a living donor usually functions immediately, because the kidney is out of the body for a very short time. Some deceased donor kidneys do not function immediately, and as a result, the patient may have to go on dialysis anyway until the kidney starts to function. [Read more]
From Times Live, Zaire, by POPPY LOUW
A group of Kenyan high school- girls have revolutionised kidney donation by creating a donor app.
The app, developed with the help of their teacher, is a doctor-donor-recipient portal that shortens the time that patients must wait for organs and is especially useful in a country that does not have a formalised donor system.
Now in its pilot phase, the app is being tested by Kenyan hospitals.
Although South Africa already has a similar system in place, a patient on the kidney transplant waiting list is keen for the innovative app to arrive here.
It has been 26 years since Casper Walkers, 66, was diagnosed with polycystic kidney disease - a disorder he inherited from his father.
Patients with this disease develop clusters of cysts (non-cancerous sacs containing water-like fluid) within their kidneys.
Walkers, an Organ Donor Foundation volunteer from Centurion, near Pretoria, said the app could, in conjunction with the current system, assist patients to find donors.
"Many people aren't aware of the difference they could make if they became an organ donor.
"Some patients die after waiting for years for a transplant," he said.
Walker is one of about 1,400 South Africans, adults and children, waiting for a kidney transplant.
According to Organ Donor Foundation statistics, a patient waiting for a kidney transplant who does not have a family member or friend who can donate a compatible kidney can wait for up to eight years for a transplant.
Foundation executive director Samantha Nicholls said South Africa was in "desperate need" of more organs. She said the lack of understanding and education about organ donating was the foundation's biggest problem.
She encouraged those who have signed up, or want to, to tell their family immediately.
"In South Africa, even if you have indicated your wish to be an organ donor by signing up with our foundation, the family will, nevertheless, be asked for consent at the time of death," said Nicholls.
An estimated 81 kidney transplants were performed in 2014 and a further 3,000 patients are waiting for organs such as hearts, lungs, pancreases and livers.
There are almost 200,000 donors on the foundation's database. More than 43,000 signed up last year.
A WOMAN from Dinas Powys took part in a 250 mile charity run across Iceland in support of the charity who helped her colleague as he underwent a life-saving kidney transplant.
Charlotte Bloxham, 22, raised £1800 for Kidney Wales through the Icelandic adventure, and is now planning on taking on the Cardiff 10k for the same charity later this year.
Miss Bloxham found out her co-worker Laurence Weekley was suffering with polycystic kidney disease - an inherited illness - when she began working at the Cardiff based Covert Investigations and Surveillance Ltd.
In November 2015, after managing the disease for a number of years, Mr Weekly was told that he would need dialysis treatment at home three to four times each day, while the search for an organ donor began.
Seeing his struggle, Miss Bloxham decided to take on a 250 mile run across the extreme volcanic landscape of Iceland, to raise funds for the Kidney Wales Foundation - the charity that would support her colleague through his illness.
In April Miss Bloxham and a group of friends set off to Jokulsarlon to begin the trek that would see them race across the south coast of Iceland, rising at 8am and run until 7.30pm every day for four days.
On the fourth day she received the news that a donor had been found for Mr Weekly and he was due to receive a transplant in the morning.
His operation was a success and doctors are confident that he no longer requires dialysis treatment.
Fresh from the success of her Icelandic adventure, Miss Bloxham is pulling on her trainers once again and participating in this year’s Cardiff 10k road race, where she will be fundraising for Kidney Wales running alongside Mr Weekly’s son, Jac - who has yet to discover if he will suffer from the same disease that as afflicted both his father and grandfather.
“I can’t wait to race in my very first Cardiff 10K this September," she said. "Getting the message that Laurence was on his way for a transplant as we reached our last day of the challenge in Iceland was incredible. It made all the pain worthwhile and spurred me on to reach the finish line.
“Seeing Laurence go through so much at the same age as my dad was heart-breaking, and I wanted to do everything I could to help him. I can’t wait to race again later this year and raise even more money for Kidney Wales.”
Roy Thomas, Chief Executive of Kidney Wales said: “I applaud Charlotte and her group for the challenge they took on in Iceland and here at Kidney Wales we are truly grateful for the support they have given us."
Registration for the 2016 Cardiff 10k event is now open. To find out more about the event visit www.cardiff10K.cymru or call 02920 343951.
From Fundly.com
PKD
From Sereda Mills
In lieu of wedding gifts we would like to rise money for the PKD foundation. Polycystic Kidney Disease.
From ABC News, By TOM MURPHY, AP HEALTH WRITER
Travel costs that could dissuade potential kidney donors from volunteering for life-saving transplants will be reimbursed by the nation's biggest insurer starting next year in a move designed to encourage more donations.
UnitedHealth Group says that it will pay back up to $5,000, not counting lost wages from missed work, becoming the latest insurer to reimburse people who donate for an organ transplant.
Insurers cover the medical expenses for someone who donates an organ, but many plans do not pay the cost of getting to the surgery site, staying near it while recovering and making medical appointments tied to the donation. Some states offer tax breaks for these costs.
People who travel to donate a kidney can miss at least two weeks of work and spend $5,000 or more, according to Harvey Mysel, president of the nonprofit Living Kidney Donors Network. He says these costs can discourage people from becoming donors.
"It is a challenge for many people," he said.
It is illegal to pay someone to donate an organ, but other insurers like Aetna, Cigna and the Blue Cross-Blue Shield carrier Anthem also cover some of the expenses a donor incurs.
Starting in January, UnitedHealth will reimburse lodging and travel expenses beginning with a doctor's initial evaluation and continuing for up to two years after the donor surgery. UnitedHealth will limit this initially to its fully insured coverage, which typically entails individual plans and coverage offered through small employers.
But company officials say they may expand the reimbursement if it proves successful.
The insurer covered 75 transplants from living donors last year through its fully insured coverage, according to Dr. Jon Friedman, an executive with UnitedHealth's Optum subsidiary. He couldn't say how many cases involved travel. He said UnitedHealth decided to reimburse for the additional expenses in order to spark more interest in live organ donation. [Read more]
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