From CTV News Monteal
Teen invents portable, low-cost dialysis machine
What started off as a science project may have a revolutionary impact for dialysis patients.
Montreal teenager Anya Pogharian has received international attention for a portable dialysis machine she created for a local science fair.
“I wanted to mimic the exact same circuit as a dialysis machine because I'm trying to see if the cost can be reduced while maintaining the functionality,” explained the teen inventor, who has spent well over 300 hours on the project, even though the science fair only required 10.
Inspired after a summer of volunteering at the Montreal General Hospital, the teen said she realized that a portable system could make a major difference.
Typically used by kidney disease patients, dialysis removes waste and excess water from the blood. It can be a time-consuming process.
“Dialysis normally takes hours in a hospital setting, several times a week,” she said, adding that a portable machine could help bring the treatment to those who need it abroad. “Like for example, 90 per cent of patients living in India and Pakistan who need the treatment to survive don't have access to it. So, a lot of preventable deaths.”
She started researching the problem online and read owner’s manuals of dialysis machines to provide inspiration and insight into how to invent her own.
While dialysis machines currently cost about $30,000, her second prototype cost about $550 to build and is receiving international interest.
Hema-Quebec approached her with an idea to test it in their Quebec City lab. The results were impressive.
“We were expecting to run the system for 2.5 hours and after 25 minutes (the patient) was already in the zone where we wanted the level of potassium to be, so the system was quite efficient,” said Yves Blais, vice-president of research and development for Hema-Quebec.
They've invited Pogharian back to test her third prototype when it's ready.
As she prepares to start her last year of CEGEP, Pogharian has a few projects on the side, including giving a Ted X talk and collaborating with a Harvard professor.
Developing her project is always top-of-mind, though.
“I just found it interesting, just really interesting and I saw there was a need and I figured, ‘Why don't I try something?’” she said.
PKD Fundraising
From Enid News, Enid, Oklahoma By Cass Rains
Oklahoma City's theater group Whodunit Dinner Theatre will perform "Win, Lose or Die," a murder mystery story about a group of Oklahoma hillbillies that win the lottery.
The dinner is a whole hog roast with sides. A chicken option is also available. The event at Function Junction, 800 W. Broadway, will also include an auction.
Tickets are $60 per person and attendees are encouraged to "get gussied up in their hillbilly best. The dinner begins at 6 p.m.
The dinner will benefit Enid resident Melissa Thomas, who must raise $20,000 for a kidney transplant.
Four years ago, Thomas was diagnosed with polycystic kidney disease and told she would need a kidney transplant.
The disease causes the kidneys to swell, and because the kidneys control so much in the rest of the body, it causes multiple complications, such as liver cysts, heart problems and brain aneurysms.
Last July, Thomas was referred for a transplant. Because polycystic kidney disease, or PKD, has no cure, it is the only way to save her life.
Before she can receive a transplant, Thomas must raise $20,000.
From Sonoma-Index Tribune, BY JAMES MARSHALL BERRY
Lisa Flores Buffalo will carry on the PKD awareness campaign launched in 2009 by the late Norton Buffalo.
Polycystic Kidney Disease, and a cure for it, has become a cause lately for several local musicians, some no longer here with us.
PKD causes cysts to grow in the kidneys, eventually leading to kidney failure, at which point a person would need dialysis or a transplant. PKD is one of the most common, life-threatening genetic diseases, affecting thousands of Americans and millions worldwide. At this point in time, there is no treatment or cure for this disease.
In 2009, the late Norton Buffalo, along with several musician friends, participated in a night of music to bring awareness and educate the public about Polycystic Kidney Disease, a disease his close friend, Doug Graham had inherited. Graham continues his efforts to educate the public about PKD and is hosting a concert at Studio 35 on Sunday, Aug. 23, kicking off at 1 p.m., which features a show with some of his former bandmates, including Dave Aguilar, Lisa Flores Buffalo and David Brown.
Local singer-songwriters Theresa Stoops and Jim Brumm will also be playing some of their original songs.
There will be information available to help educate folks about the PKD Foundation’s research, education, advocacy, support and their annual “Walk for a PKD Cure,” which will be held on Sept. 26. You can sign up to participate on your own or be on Doug Graham’s team, “Team Penguin.” Sonoma’s Alcadessa Marcie Waldron will also be at the event to share information about her “Got the Dot” campaign to get a thousand Sonomans to put the pink dot on their license, to donate organs, and life, to others.
The event is free but donations are encouraged. Studio 35 is at 35 Patten St. in Sonoma. For more info, point your browser to studio35sonoma.or call Doug Graham at 334-5472.
Living With PKD
As her kidney health continues to diminish, Sandra Thomas waits to see if a matching live donor can be found for her.
— Image Credit: Kristi Dobson, Times
— Image Credit: Kristi Dobson, Times
Finding a live kidney donor has been like searching for a needle in a haystack for Sandra Thomas. When she was in her twenties, was diagnosed with Polycystic Kidney Disease, a genetic disorder that was passed down from her father.
Although she was not surprised by the diagnosis, it has recently brought about an urgent search for a donor. The disease has affected ten family members on her father's side and she has witnessed its progression firsthand.
Four year ago, Thomas' father passed away from complications of the disease which affected his heart, something she hopes to avoid.
PKD causes cysts to form on the kidneys, which fill with fluid and enlarge the organ. From there, a person can develop high blood pressure and heart disease. The kidney functions also start to decline, which can be gradual or rapid. When the kidney is functioning at 20 to 15 per cent in an affected person, a live donor transplant is an option. Right now Thomas is at 20 per cent.
"I was at 25 per cent and then all of a sudden it dropped quickly," she said.
Although concerned about her own health, she was hesitant to reach out for help.
"The hardest and scariest part was watching my dad," she said. "I learned a lot from him and I know the things I have to do to protect my heart. He could never have been a heart or kidney recipient."
Two of Thomas' four adult children have also inherited PKD.
"I was most affected when it affected my children," she said.
Now that she is seeing a rapid decline in her own kidney function, Thomas is taking a proactive approach by searching for a donor. She has two main road blocks, however.
Thomas has Type O blood and requires a donor to be Type O for a match. Even more challenging is that her body has developed antibodies to protect itself, but in turn would reject a large portion of donors in the province.
"My antibodies would attack a kidney from 64 per cent of donors' kidneys, but that leaves 36 per cent I could use, so there is someone out there," she said.
At the advice of her network of professionals at St. Paul's Hospital in Vancouver, where transplants take place, Thomas began spreading the word about her situation. She set up a Facebook page and had 16 friends and family step forward. Of the 16, only two made it through the end of the extensive testing. In the end, she found out her body would not accept those kidneys.
Thomas extended her search publicly with another online matching program and another eight people came forward.
"For now it is a waiting game but it is getting scary because my kidney function is dropping fast," she said. "It just takes time and I have to put it out there.
The alternative would be a lifetime of dialysis, which would not only affect her daily life, but employment.
"The beds in Port Alberni are full so I would have to travel or do dialysis at home," she said.
Thomas hopes to maintain her health as she waits for a compatible donor by staying hydrated and maintaining a special diet to control blood pressure.
Anyone who is blood type O and willing to undergo further testing as a match for Thomas can call the Kidney Pre-Transplant Program at St. Paul's Hospital at 604-806-9078.
From Huddersfield Daily Examiner, United Kingdom, BY NICK LAVIGUEUR
Although she was not surprised by the diagnosis, it has recently brought about an urgent search for a donor. The disease has affected ten family members on her father's side and she has witnessed its progression firsthand.
Four year ago, Thomas' father passed away from complications of the disease which affected his heart, something she hopes to avoid.
PKD causes cysts to form on the kidneys, which fill with fluid and enlarge the organ. From there, a person can develop high blood pressure and heart disease. The kidney functions also start to decline, which can be gradual or rapid. When the kidney is functioning at 20 to 15 per cent in an affected person, a live donor transplant is an option. Right now Thomas is at 20 per cent.
"I was at 25 per cent and then all of a sudden it dropped quickly," she said.
Although concerned about her own health, she was hesitant to reach out for help.
"The hardest and scariest part was watching my dad," she said. "I learned a lot from him and I know the things I have to do to protect my heart. He could never have been a heart or kidney recipient."
Two of Thomas' four adult children have also inherited PKD.
"I was most affected when it affected my children," she said.
Now that she is seeing a rapid decline in her own kidney function, Thomas is taking a proactive approach by searching for a donor. She has two main road blocks, however.
Thomas has Type O blood and requires a donor to be Type O for a match. Even more challenging is that her body has developed antibodies to protect itself, but in turn would reject a large portion of donors in the province.
"My antibodies would attack a kidney from 64 per cent of donors' kidneys, but that leaves 36 per cent I could use, so there is someone out there," she said.
At the advice of her network of professionals at St. Paul's Hospital in Vancouver, where transplants take place, Thomas began spreading the word about her situation. She set up a Facebook page and had 16 friends and family step forward. Of the 16, only two made it through the end of the extensive testing. In the end, she found out her body would not accept those kidneys.
Thomas extended her search publicly with another online matching program and another eight people came forward.
"For now it is a waiting game but it is getting scary because my kidney function is dropping fast," she said. "It just takes time and I have to put it out there.
The alternative would be a lifetime of dialysis, which would not only affect her daily life, but employment.
"The beds in Port Alberni are full so I would have to travel or do dialysis at home," she said.
Thomas hopes to maintain her health as she waits for a compatible donor by staying hydrated and maintaining a special diet to control blood pressure.
Anyone who is blood type O and willing to undergo further testing as a match for Thomas can call the Kidney Pre-Transplant Program at St. Paul's Hospital at 604-806-9078.
Mandy Littlewood of Longwood who has been waiting for years for a kidney transplant with her husband John Paul, son Zac and daughter Millie.
A Huddersfield mum has prolonged the agony of her own kidney disease in order to save her son.
Amanda Littlewood, 38, from Longwood has suffered with polycystic kidney disease all her adult life.
With her kidneys failing, forcing her to spend three days a week in hospital, her husband John Paul stepped forward and said he would donate one of his.
But the life-saving procedure has been put on hold after the family got the devastating news that their eight-year-old son Zac may need the surgery.
The tragic development wasn’t a total surprise as the family have a long history with the inherited killer disease.
“I got diagnosed when I was 18,” said Amanda. “But my mum, my brother and my grandma already had it.
“My mum got a transplant about five years ago and my brother had one last year.
“My husband was all set to donate one of his kidneys to me but then we found out our youngest Zac needed it.
“I said to him, hold off and see if Zac can have it.”
Amanda’s two other children, nine-year-old Millie and 18-year-old Cathan have had no problems so far but are yet to get the all clear from doctors.
But Zac, who attends Moorlands Primary School, is struggling and urgently needs the transplant.
The poorly youngster’s problems are all the worse as he also suffers with epilepsy.
Amanda said she had been surprised at how few donors there are in Britain.
Calderdale and Huddersfield NHS Foundation Trust has revealed it secured just 10 donors in 2014/15 – fewer than one a month.
“I was really shocked,” said Amanda.
“I thought there would be a lot more than that, especially now there’s a lot more information about it. [Read more]
Gift of Life
In between times Daryl Shields had donated one of his kidneys. The first anniversary of the operation was last week and he’s as fit as a fiddle and eager to talk about kidney donation.
Polycystic Kidney disease is hereditary. If one or other parent has the disease, the child has a one-in-two chance of inheriting it and certainly there’s a lot of history in this young man’s family as it has effected aunts, uncles, two siblings and his mother who passed away three years ago.
“I watched my mum on dialysis for 10 years both at home and in the Belfast City Hospital, three days a week, four hours each time so it was constant.”
Not surprising that as he was growing up it was always at the back of his mind that he too might have the potentially life-limiting condition where kidneys lose their ability to filter waste and fluid from the blood stream to form urine.
Dialysis is one answer but a transplant, when it’s successful, is the ideal. Daryl was first tested in his early 20s and is checked every few years so having two healthy kidneys was a big plus when one of his siblings needed help.
“Very private,” he told me when we talked in Flame Restaurant, where he is manager. “No names but we both appreciate that August 10 2014 was a special day and we’re both delighted that it worked.”
Donation is interesting. I was surprised to learn from Daryl’s consultant surgeon, Mr Tim Brown, that kidneys can be swapped around. For instance, if I’m sitting in Belfast and decide to donate to a patient in the City Hospital and it turns out my kidney isn’t a match, my kidney can be offered to a patient elsewhere in the UK and a kidney from that area travels to Belfast for the patient in the City.
Indeed, it can even be a three-way transaction such is the efficiency of the national paired exchange programme. Also, it’s good to hear that last year 11 people in Northern Ireland walked in off the street to offer a kidney, ‘altruistic donors’ giving the invaluable gift of life.
He said that more than 50 per cent of transplants in Belfast are from live donors, more than anywhere else in the United Kingdom and Ireland; the balance come as a result of thoughtful donors and their families donating organs in tragic circumstances.
Before the operation Daryl had a lot of tests. “The transplant team when through the procedure so I was well prepared. It was explained to me that if the operation was a success, the kidney ceased to be mine, ownership passed to the receiving patient. Also, even on the operating table I could still change my mind. So there was a lot to think about.”
It has been a traumatic time for Daryl and the family and because of the outstanding care they have experienced at the Belfast City Hospital, he has established a new charity, Donate Life.
“I want to raise the profile of transplant in Northern Ireland so I organised a ball in the Europa and our Donate Life Charity raised £25,000. Part of this money was to refurbish the family room in the City but thanks to the generosity of interior designer Adrian Bailie and his clients, all the furnishings have been donated. We’ve even found wonderful digitally printed wallpaper in restful blues and whites so it will be a very tranquil room.
"We start on Monday knowing all of the money collected will now go towards research and much needed equipment."
So, today’s the day, and it’s all a surprise for the staff and patients with Daryl leading the way.
“I want people to know about the fantastic opportunity of giving someone else a better quality of life and, without exaggeration, life itself. If anyone is thinking of donating a kidney, please get in touch with me via the hospital and I’ll be happy to have a chat.”
:: More at donatelife.co.uk or contact the Live Donor Co-ordinators at 028 9504 8293 or 028 9504 9437.
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