From County Record, Blountstown, Florida, by Kelli Peacock Dunn
WANTED: A Hero
Tonya Stewart Lawrence and her family are praying for a kidney donor. Could you be the match she so desperately needs?
A Blountstown native who works as a nurse in our community now finds herself on the receiving end of medical care. Just recently, a chronic illness she has been managing for a decade took a turn for the worse and she is now on a waiting list to receive a kidney.
A 1996 graduate of Blountstown High School, Tonya Stewart Lawrence, 38, and her husband, Brett, reside in Two Egg with their four children. By day, Tonya works as a nurse at TMH Blountstown Family Practice.
“Back in 2005, I was diagnosed with polycystic kidney disease,” says Tonya. “Basically, cysts overtake your kidneys. I went on several different medications and every once in awhile I’d have a kidney stone.”
The condition was completely manageable until May when Tonya was preparing for a sinus procedure and was told she couldn’t have the surgery. “My creatinine levels were too high which is related to kidney function,” she explains. “They were hesistant to put me to sleep.”
A short time later, Tonya was referred to the Mayo Clinic where she received some dreaded news: She is facing dialysis and a transplant. Just two weeks ago, the plan of action went a step further when she was placed on a transplant list.
Finding a match isn’t always a quick process. “Average wait times are two to four years,” says Tonya. To receive a kidney from a donor at time of death, the wait is up to five years.
Tonya’s brother was the first to step up and see if he could be the match she so desperatedly needs. At first, it seemed he would be the ideal donor. “He was the perfect match,” she remarks. “But then they did a urinalysis on him and he had too much sodium. He is always going to produce kidney stones so they didn’t want to take that kidney.”
So now the search goes on for anyone who could possibly be a match and be willing to give one of their kidneys so this wife and mother can live a normal life.
How can you be the hero Tonya needs?
-Donors must have Type O blood as Tonya is O+ (Blood type O is the universal donor and can give to all blood types)
-Be between the ages of 18 and 70
-No diabetes
-No hypertension
-No active infections
-No active cancer
-Have a healthy BMI (body mass index) less than 31% for donors under age 30, 35% for ages 31-45 and 40 percent for ages 46 and older
If you’d like to be tested to see if you could be a match for Tonya, call Lisa Leath, Living Donor Coordinator, at 904-956-3249. You can also message Tonya on Facebook for more information.
Please watch for details on fundraisers for Tonya as the surgery and recovery process will be costly for her. Even with insurance, her monthly medication costs alone will be $1500 out of pocket.
“This is such a humbling experience,” says Tonya. “I’m just an independent person. It’s very difficult to ask for help and reach out to your community.
There are a lot of emotions are involved.”
From The Tribune, Greeley, Colorado
The smoky smell of barbecue, bright orange jerseys and tinny sound of sports broadcasters made for a proper tailgate, but Broncos fans didn’t pack the Double Play parking lot for just a football game.
The locally owned sports bar, which sits in the Greeley Mall parking lot on 23rd Avenue, hosted a fundraising event Sunday afternoon.
Their goal: raise awareness about polycystic kidney disease and maybe find a kidney donor.
PKD is a hereditary disease that can cause painful swelling and eventually lead to kidney failure, according to the PKD Foundation. Funds from Sunday’s event went to the nonprofit.
Parents have a 50 percent chance of passing it along to their children.
Double Play co-owner Jeff Woltemath is invested in the cause. His wife, Autumn, has PKD. He said not many people are aware the disease exists.
“You hear about cancer, you hear about heart disease,” he said.
PKD doesn’t get the same attention.
He’s been working with his wife and a few other people to get the word out about the disease, using Facebook and events like Sunday’s.
They’re also looking for a donor. Autumn’s father, Bob Ellis, has PKD, too. His has progressed far enough to land on the transplant list.
A big blue poster with a photo of Ellis in a cowboy hat hung in the massive tailgating tent, encouraging fans to consider donating.
Ellis was wearing the same cowboy hat Sunday, sitting near the TV inside the tent. He said he didn’t love the attention, but he was grateful his daughter was so passionate about his health and helping him.
Ellis’ wife, Lesa, also was at the tailgate. She said Autumn was Bob’s kidney donor champion.
Most people don’t realize they only need one kidney and can donate the other, Lesa said.
“If you’re on the kidney transplant list, you’re waiting for someone to die,” she said. “It really doesn’t have to be that way.”
"PKD Walk Nashville, TN Oct 31st, 2015 @ Shelby Park.We raised money for research and treatment of PKD, a deadly genetic disease that affects millions. There is currently no meds or treatment available. CustomInk provided great service and a great product!!! We had many complements on our T-shirts! Thank you!! " - http://nashvillewalk@pkdcure.org - Rebecca Bush (Becky) (Nov 11, 2015)
Kidney donor enters couple's lives thanks to swiping right on Tinder
Almost four months ago, Rich O'Dea took Jennifer Thomas out on a blind date.
Both were trying to get over recent breakups. O'Dea told Thomas about his passion for running marathons. He told her about his close friend, Scott Bragan, who leads a team of marathoners who raise awareness and funds for the Polycystic Kidney Foundation.
His wife, Erika Bragan, suffers from polycystic kidney disease, a genetic disorder that can cause kidney failure. She was facing a lifetime of dialysis or a kidney transplant.
Thomas wanted to help. She has O-positive blood.
Erika Bragan also has O-positive blood.
Thomas got tested. After weeks of tests, she got the news: She was a match.
Now, Erika Bragan is set to get a new kidney from someone she had never met before.
And all because two people swiped right on Tinder.
Erika Bragan was diagnosed with the disease, known as PKD, 14 years ago while she was pregnant with her daughter.
Parents have a 50 percent chance of passing the disease along to their children. The Bragans have two: Madison, 14, and Spencer, 11. The parents said their children have not yet been tested for the disease because of insurance reasons.
About 600,000 Americans suffer from PKD, the fourth leading cause of kidney failure. More than 50 percent will have failing kidneys by age 50, according to the PKD Foundation.
Erika Bragan, 44, has spent two years on the transplant list. Scott Bragan, 47, was once a match for his wife. But then his blood pressure medication eliminated him as a donor.
So, he turned to marathons. Since 2009, he said his Team Tampa PKD has run eight marathons and raised about $115,000 for the PKD Foundation.
"As Erika got more sick," he said, "my way of dealing with it was to run and raise money and awareness."
Through the team's efforts, four potential donors came forward to try to help Erika Bragan. They went through the testing process, but none were matches. [Read more]
Gift of Life
From Tampa Bay Times, Tampa Bay, Florida, by Chelsea, Tatham
Kidney donor enters couple's lives thanks to swiping right on Tinder
Both were trying to get over recent breakups. O'Dea told Thomas about his passion for running marathons. He told her about his close friend, Scott Bragan, who leads a team of marathoners who raise awareness and funds for the Polycystic Kidney Foundation.
His wife, Erika Bragan, suffers from polycystic kidney disease, a genetic disorder that can cause kidney failure. She was facing a lifetime of dialysis or a kidney transplant.
Thomas wanted to help. She has O-positive blood.
Erika Bragan also has O-positive blood.
Thomas got tested. After weeks of tests, she got the news: She was a match.
Now, Erika Bragan is set to get a new kidney from someone she had never met before.
And all because two people swiped right on Tinder.
Erika Bragan was diagnosed with the disease, known as PKD, 14 years ago while she was pregnant with her daughter.
Parents have a 50 percent chance of passing the disease along to their children. The Bragans have two: Madison, 14, and Spencer, 11. The parents said their children have not yet been tested for the disease because of insurance reasons.
About 600,000 Americans suffer from PKD, the fourth leading cause of kidney failure. More than 50 percent will have failing kidneys by age 50, according to the PKD Foundation.
Erika Bragan, 44, has spent two years on the transplant list. Scott Bragan, 47, was once a match for his wife. But then his blood pressure medication eliminated him as a donor.
So, he turned to marathons. Since 2009, he said his Team Tampa PKD has run eight marathons and raised about $115,000 for the PKD Foundation.
"As Erika got more sick," he said, "my way of dealing with it was to run and raise money and awareness."
Through the team's efforts, four potential donors came forward to try to help Erika Bragan. They went through the testing process, but none were matches. [Read more]
PKD Research
From Medscape
"We do not do a good job at answering the unmet needs of our dialysis patients," said Victor Gura, MD, a nephrologist at the Cedars Sinai Hospital, Los Angeles, who is also from the David Geffen School of Medicine at the University of California, Los Angeles.
"The draconian impositions we make on these patients in terms of not only being tethered to a machine ('doing time' as patients say) but also the limitations of diet — two glasses of orange juice and a bag of potato chips is enough to kill these patients" — don't make for a very good life, he said.
Dr Gura, who invented the wearable device, spoke at a press briefing here at Kidney Week 2015: American Society of Nephrology Annual Meeting.
Dialysis on a Belt
The wearable artificial kidney is a battery-operated belt-like device (think construction workers' belts from Home Depot) that miniaturizes the functions of a 300-pound dialysis machine in just 11 pounds, which is light enough to allow patients the freedom to move.
The device also uses just a half a liter of water compared with the 40 gallons of water required during a normal session of hemodialysis.
In an earlier proof-of-concept study involving eight patients requiring hemodialysis published in theLancet, Dr Gura and colleagues report that their wearable hemodialysis device showed promising safety and efficacy results, although further studies would be necessary to confirm their findings (Lancet. 2007;370:2005-2010).
In the current trial, Dr Gura and colleagues tested the wearable artificial kidney on seven more patients receiving hemodialysis at the University of Washington in Seattle. The researchers aimed to determine the safety and efficacy of the device in achieving solute electrolyte and volume homeostasis during a 24- hour period.
"The difference between this trial and the one we did previously was that the regulators allowed patients to wear the [device] for 24 hours for the first time," Dr Gura explained.
Of the seven patients who tested the device, five patients completed the planned 24 hours of study treatment, whereas the remaining two patients completed 4 and 10 hours of treatment, respectively.
Six of the seven patients were mobile while undergoing dialysis with the wearable kidney.
Laboratory and hemodynamic parameters remained stable during the 24-hour test run.
From Nano Technology Now
Research that could lead to the development of a surgically implantable, artificial kidney, was presented at ASN Kidney Week 2015 November 3-8 at the San Diego Convention Center in San Diego, CA. Advances in nanofilter technology were produced in collaboration between investigators from UCSF and Vanderbilt University. The research recently received a new $6 million grant through the National Institute of Biomedical Imaging and Bioengineering's Quantum Program.
A surgically implantable, artificial kidney could be a promising alternative to kidney transplantation or dialysis for people with end stage renal disease (ESRD). Currently, more than 20 million Americans have kidney diseases, and more than 600,000 patients are receiving treatment for ESRD. U.S. government statistics indicate kidney care costs the U.S. health care system $40 billion annually, accounting for more than 6 percent of Medicare spending.
"We aim to conduct clinical trials on an implantable, engineered organ in this decade, and we are coordinating our efforts with both the NIH and the U.S. Food and Drug Administration," said Shuvo Roy, PhD, a UC San Francisco bioengineer who led the research together with Vanderbilt University nephrologist William Fissell, MD.
Roy is the technical director of The Kidney Project at UCSF, a multi-institutional collaboration that has prototyped and begun testing key components of the coffee-cup-sized device, which mimics functions of the human kidney.
One component of the new artificial kidney is a silicon nanofilter to remove toxins, salts, some small molecules, and water from the blood. Roy's research team designed it based on manufacturing methods used in the production of semiconductor electronics and microelectromechanical systems. The new silicon nanofilters offer several advantages -- including more uniform pore size -- over filters now used in dialysis machines, according to Roy. The silicon nanofilter is designed to function on blood pressure alone and without a pump or electrical power.
Fissell, associate professor in the Department of Medicine at Vanderbilt and medical director for The Kidney Project, said the project's goal is to create a permanent solution to the scarcity problem in organ transplantation. "We are increasing the options for people with chronic kidney disease who would otherwise be forced onto dialysis," Fissell added.
The artificial kidney being developed by Roy and Fissell is designed to be connected internally to the patient's blood supply and bladder and implanted near the patient's own kidneys, which are not removed. Along with Roy at UCSF and Fissell at Vanderbilt, a national team of scientists and engineers at universities and small businesses are working toward making the implantable artificial kidney available to patients.
In September the project was designated for inclusion in the FDA's new Expedited Access Pathway program to speed development, evaluation, and review of medical devices that meet major unmet needs in fighting life-threatening or irreversibly debilitating diseases.
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