From Good Housekeeping Blog, By Caroline Picard
Devoted husband Jim Small is trying just about everything to find an organ donor for his wife. Earlier this month, he put a bold sign on his pickup truck advertising the Rhode Island couple's special need.
The message,"Type O Blood. Wife Needs Kidney. Please Donate," is for his spouse, April Small, who learned she had polycystic kidney disease over two decades ago. Unfortunately, her rare type O-negative blood has delayed recovery. And now, the cysts are essentially strangling her kidneys — making it impossible for her organs to do their vital job.
To raise awareness of her plight, April's whole family is pitching in. Jim and his daughter have similar signs on their cars, plus he's started an online campaign to find possible matches. And they have hope — April's brother, Lloyd Nieforth, also suffered from PKD, and was lucky enough to be a match with his wife. The now healthy couple is trying to dispel myths about organ donation.
Some common misconceptions? That there's a long recovery period or you have to take medication for the rest of your life. Hopefully the inspiring group's message will reach enough eyes soon. For information on how you can be tested as a potential donor for April, contact the Rhode Island Hospital's Transplant Center.
From KEYE, CBS Affiliate, Austin, Texas
In part, the magnets on their vehicles say, “My sister needs a kidney. Blood type O. Going on dialysis 4/30/15." It's an unconventional way to find a donor, but they heard it worked for a woman in Washington State, and now they're hoping for the same success.
“I've had people ask me if they can take pictures of it and they say they're going to post it on the internet,” says Heath Frisbie, who is looking for a kidney for his sister, Michelle Pederson.
"I was hoping, when we started with the magnets on the cars that someone would see it and say, ‘I really wanted to help someone for a long time,’” explains Pederson’s mother, Sandy Dixon.
Friday night, Pederson was in significant pain. She's recovering after one kidney was removed last week. For decades, she's been fighting polycystic kidney disease.
“Your kidneys get thousands of cysts on them, and the one cyst on her left was so big… that when you would feel her, it would feel like there was a baby in there,” Dixon says.
Pederson is starting dialysis three days a week while waiting for a donor. When Pederson’s mother and brother learned that wait could be six years long, they took to the streets to find a match.
“We are just looking for more ways to get it out,” Frisbie says.
“The more people the better because there's no saying you're going to be a match just because you have an o [blood type],” Dixon adds.
The search for a donor with an O blood type is where they’re starting, and a perfect match is where they aim to finish.
So far, two people have expressed interest in being Pederson’s donor, but they have to undergo various tests first. Once the blood type matches, they have to do tissue matches and psychological tests.
The vetting process can take months. Interested donors can reach Pederson's mother, Sandy Dixon, at 512-599-1774.
From WLWT, NBC Affiliate, Cincinnati, Ohio, By Emily Wood
Family friend, 51, gives kidney to 17-year-old Warren County girl
Transplant complicates hospital policies
BUTLERVILLE, Ohio —A 17-year-old high school junior is ready to start living her life as every teen should.
"I've had to give up driving and having a job and I don't get to go to school much and those are all things I really want to do -- just to be normal," Mackenzie Gilbert said.
Gilbert has polycystic kidney disease and is scheduled for a kidney transplant Thursday morning. Her donor, Kelley Fitzgerald, is a close childhood friend of Gilbert's mother, Robin Gilbert.
"I wanted to do it for Robin just as much as for Mackenzie," Fitzgerald said.
At 51, Fitzgerald's operation has to take place at UC Medical Center, while Mackenzie Gilbert will receive the transplant at Cincinnati Children's Medical Center.
"No one had qualified to donate for a child that was over 50," Fitzgerald said. "Once we did qualify, we did have to wait for several months for Children's to get a policy in place to be able to transfer the kidney."
Fitzgerald told WLWT News 5 the decision to donate was easy and more people should think about doing it.
"I feel great. I feel excited about it. I don't have any apprehensions. I don't have any fears," Fitzgerald said. "It's a blessing to me. So many people are out there needing kidneys and it's not a hard thing to do."
According to the United Network of Organ Sharing, in Cincinnati, 398 people are currently waiting for a kidney transplant. Last year in Ohio, 381 kidney transplants were performed and 277 were from living donors.
Because of her surgery, Mackenzie Gilbert finished her junior year early at Warren County Career Center and she is excited to complete her senior year before graduating in 2016.
"When I am healed and healthy and don't have my disease anymore, I'm looking forward to not going to the hospital anymore," Mackenzie Gilbert said. "Any kid, if they go through this, they need to know that it will be OK and it will come out OK."
The Gilbert family has set up a GoFundMe page to cover medical expenses.
Kidney Transplant Summit recommends presumed consent legislation to increase organ donation in BC.
Gift of Life
BUTLERVILLE, Ohio —A 17-year-old high school junior is ready to start living her life as every teen should.
"I've had to give up driving and having a job and I don't get to go to school much and those are all things I really want to do -- just to be normal," Mackenzie Gilbert said.
Gilbert has polycystic kidney disease and is scheduled for a kidney transplant Thursday morning. Her donor, Kelley Fitzgerald, is a close childhood friend of Gilbert's mother, Robin Gilbert.
"I wanted to do it for Robin just as much as for Mackenzie," Fitzgerald said.
At 51, Fitzgerald's operation has to take place at UC Medical Center, while Mackenzie Gilbert will receive the transplant at Cincinnati Children's Medical Center.
"No one had qualified to donate for a child that was over 50," Fitzgerald said. "Once we did qualify, we did have to wait for several months for Children's to get a policy in place to be able to transfer the kidney."
Fitzgerald told WLWT News 5 the decision to donate was easy and more people should think about doing it.
"I feel great. I feel excited about it. I don't have any apprehensions. I don't have any fears," Fitzgerald said. "It's a blessing to me. So many people are out there needing kidneys and it's not a hard thing to do."
According to the United Network of Organ Sharing, in Cincinnati, 398 people are currently waiting for a kidney transplant. Last year in Ohio, 381 kidney transplants were performed and 277 were from living donors.
Because of her surgery, Mackenzie Gilbert finished her junior year early at Warren County Career Center and she is excited to complete her senior year before graduating in 2016.
"When I am healed and healthy and don't have my disease anymore, I'm looking forward to not going to the hospital anymore," Mackenzie Gilbert said. "Any kid, if they go through this, they need to know that it will be OK and it will come out OK."
The Gilbert family has set up a GoFundMe page to cover medical expenses.
From NewsWire Canada
BURNABY, BC, May 6, 2015 /CNW/ - The Jury at the first-ever BC Kidney Transplant Consensus Summit hosted by The Kidney Foundation has recommended that British Columbia adopt presumed consent legislation, with the appropriate safeguards in place, to increase the number of kidney transplants in this province.
The Jury, chaired by the Hon. Wally Oppal QC, also considered but rejected the idea of offering financial incentives to organ donors. Living organ donors are currently reimbursed for expenses incurred in donating an organ, but not for the kidney itself. "As a society, we do not condone the sale of organs," said Oppal.
Jurors stated that Asian, South Asian, and Aboriginal communities in BC are over-represented in kidney disease numbers, and under-represented in kidney transplants. They flagged this as an area requiring more culturally appropriate and community driven research to identify and solve cultural and systemic barriers.
Set up court room style, the eight-member Jury heard experts support kidney transplantation as the most cost-effective option for BC dialysis patients and then weighed the evidence for and against three controversial topics: Should British Columbians automatically be considered organ donors when they die, or not? Should people be paid to be organ donors or to register as organ donors? Is it a systemic or a cultural barrier that results in lower organ donation in Aboriginal, Asian and South Asian communities?
"Kidney disease is serious and until there is a cure, the best available therapy for a dialysis patient is a kidney transplant," says Dr. David Landsberg, Medical Director of the Kidney Transplant Program for BC Transplant. "Unfortunately the demand for kidney transplants far exceeds the available supply. Right now there are 361 British Columbians on the official waitlist for a transplant, and many of them will die before they get one."
While 95% of British Columbians say they support organ donation, only 19% are actually registered on BC's official organ donor registry.
"Kidney patients are why we hosted this Summit," says Karen Philp, Executive Director, The Kidney Foundation ofCanada, BC & Yukon Branch. "Far too many people die from this serious disease and the rest of us in the kidney community need to speak out and change this story".
The Kidney Transplant Summit profiled the best available evidence to support recommendations made by 2,500 British Columbians on how The Kidney Foundation of Canada could achieve its commitment to increase kidney transplants and organ donor registration by 50% by 2019.
"I commend The Kidney Foundation on the work that they do to improve the lives of those living with kidney disease and their work with organ transplantation," says MLA for Surrey-Tynehead Amrik Virk. "Being an organ donor is offering a piece of yourself to save someone's life - a huge positive for everyone involved, and something I hope more British Columbians sign up for."
Over 361 Kidney patients traveled to the Kidney Transplant Summit from all parts of the province along with family members and caregivers, to speak out on the urgency of the need for more organ donor registration and kidney transplants.
"I was overcome with emotion at the Summit," says William Stewart, who is waiting for a kidney. "It was so inspiring to see hundreds of people from all over the province coming together to speak out for kidney patients on dialysis like me. For the first time in a long time I felt hope for a better future for me, my wife and my kids."
About The Kidney Foundation of Canada, BC & Yukon Branch
The Kidney Foundation of Canada, BC & Yukon Branch exists to help prevent kidney disease or delay the onset. We provide support services to patients who have chronic disease and promote organ donation to increase kidney transplant rates. We are here to help each and every kidney patient until there is a cure.
For kidney patients: protecting your heart
Fight or Flight
Research shows a link between kidney disease and cardiovascular problems. In fact, of the 20 million Americans diagnosed with kidney disease, more than half will die from heart disease. Now, researchers are testing a new therapy that would help protect a kidney patient's heart.
Imagine always having your nervous system on high-alert. It's a factor that leads to increased cardiovascular risk in kidney patients.
Now, a new therapy that may someday protect the hearts of patients with chronic kidney disease.
66-year-old David Mackenzie gets a workout most days, even if it's just a quick, brisk walk. He's tried to maintain a healthy lifestyle for most of his adult life.
"Early on, probably in my mid to late 30s, I began to have elevated blood pressure," recalled David. He didn't know it growing up, but David and one of his sisters would also develop polycystic kidney disease - an inherited condition that affects kidney function.
Doctor Jeanie Park, Assistant Professor at the Emory University School of Medicine, says people with chronic kidney disease have an overactivation of the sympathetic nervous system causing the so-called "fight or flight" response.
"Even though it's adaptive to have this fight or flight response in the situation when you need it, if it's revved up all the time, then it's not good for your body," said Dr. Park.
Dr. Park found that a drug already FDA approved for a metabolic disorder, dials down the adrenaline levels in kidney patients. It's called tetrahydrobiopterin park studied 32 men with moderate kidney disease, and found a decrease in sympathetic nerve activity in those who took the drug for 12 weeks.
"It could be a novel way of reducing cardiovascular risk and potentially reducing blood pressure in patients with hypertension or chronic kidney disease," explained Dr. Park.
For patients like David Mackenzie, that would mean managing just one chronic condition, kidney disease, instead of two.
Right now doctors use beta blockers and another drug, clonidine, to treat high blood pressure and the overactivation in the sympathetic nervous system. Dr. Park says those drugs are often hard for patients to tolerate.
The Jury, chaired by the Hon. Wally Oppal QC, also considered but rejected the idea of offering financial incentives to organ donors. Living organ donors are currently reimbursed for expenses incurred in donating an organ, but not for the kidney itself. "As a society, we do not condone the sale of organs," said Oppal.
Jurors stated that Asian, South Asian, and Aboriginal communities in BC are over-represented in kidney disease numbers, and under-represented in kidney transplants. They flagged this as an area requiring more culturally appropriate and community driven research to identify and solve cultural and systemic barriers.
Set up court room style, the eight-member Jury heard experts support kidney transplantation as the most cost-effective option for BC dialysis patients and then weighed the evidence for and against three controversial topics: Should British Columbians automatically be considered organ donors when they die, or not? Should people be paid to be organ donors or to register as organ donors? Is it a systemic or a cultural barrier that results in lower organ donation in Aboriginal, Asian and South Asian communities?
"Kidney disease is serious and until there is a cure, the best available therapy for a dialysis patient is a kidney transplant," says Dr. David Landsberg, Medical Director of the Kidney Transplant Program for BC Transplant. "Unfortunately the demand for kidney transplants far exceeds the available supply. Right now there are 361 British Columbians on the official waitlist for a transplant, and many of them will die before they get one."
While 95% of British Columbians say they support organ donation, only 19% are actually registered on BC's official organ donor registry.
"Kidney patients are why we hosted this Summit," says Karen Philp, Executive Director, The Kidney Foundation ofCanada, BC & Yukon Branch. "Far too many people die from this serious disease and the rest of us in the kidney community need to speak out and change this story".
The Kidney Transplant Summit profiled the best available evidence to support recommendations made by 2,500 British Columbians on how The Kidney Foundation of Canada could achieve its commitment to increase kidney transplants and organ donor registration by 50% by 2019.
"I commend The Kidney Foundation on the work that they do to improve the lives of those living with kidney disease and their work with organ transplantation," says MLA for Surrey-Tynehead Amrik Virk. "Being an organ donor is offering a piece of yourself to save someone's life - a huge positive for everyone involved, and something I hope more British Columbians sign up for."
Over 361 Kidney patients traveled to the Kidney Transplant Summit from all parts of the province along with family members and caregivers, to speak out on the urgency of the need for more organ donor registration and kidney transplants.
"I was overcome with emotion at the Summit," says William Stewart, who is waiting for a kidney. "It was so inspiring to see hundreds of people from all over the province coming together to speak out for kidney patients on dialysis like me. For the first time in a long time I felt hope for a better future for me, my wife and my kids."
About The Kidney Foundation of Canada, BC & Yukon Branch
The Kidney Foundation of Canada, BC & Yukon Branch exists to help prevent kidney disease or delay the onset. We provide support services to patients who have chronic disease and promote organ donation to increase kidney transplant rates. We are here to help each and every kidney patient until there is a cure.
Living With PKD
From UP Matters, Marquette, Michigan
Research shows a link between kidney disease and cardiovascular problems. In fact, of the 20 million Americans diagnosed with kidney disease, more than half will die from heart disease. Now, researchers are testing a new therapy that would help protect a kidney patient's heart.
Imagine always having your nervous system on high-alert. It's a factor that leads to increased cardiovascular risk in kidney patients.
Now, a new therapy that may someday protect the hearts of patients with chronic kidney disease.
66-year-old David Mackenzie gets a workout most days, even if it's just a quick, brisk walk. He's tried to maintain a healthy lifestyle for most of his adult life.
"Early on, probably in my mid to late 30s, I began to have elevated blood pressure," recalled David. He didn't know it growing up, but David and one of his sisters would also develop polycystic kidney disease - an inherited condition that affects kidney function.
Doctor Jeanie Park, Assistant Professor at the Emory University School of Medicine, says people with chronic kidney disease have an overactivation of the sympathetic nervous system causing the so-called "fight or flight" response.
"Even though it's adaptive to have this fight or flight response in the situation when you need it, if it's revved up all the time, then it's not good for your body," said Dr. Park.
Dr. Park found that a drug already FDA approved for a metabolic disorder, dials down the adrenaline levels in kidney patients. It's called tetrahydrobiopterin park studied 32 men with moderate kidney disease, and found a decrease in sympathetic nerve activity in those who took the drug for 12 weeks.
"It could be a novel way of reducing cardiovascular risk and potentially reducing blood pressure in patients with hypertension or chronic kidney disease," explained Dr. Park.
For patients like David Mackenzie, that would mean managing just one chronic condition, kidney disease, instead of two.
Right now doctors use beta blockers and another drug, clonidine, to treat high blood pressure and the overactivation in the sympathetic nervous system. Dr. Park says those drugs are often hard for patients to tolerate.
From The Doctors Lounge
FRIDAY, May 8, 2015 (HealthDay News) -- The etiology of pain in autosomal dominant polycystic kidney disease is complex, and management of pain should be approached in a stepwise manner, according to a review published in the May issue of The Journal of Urology.
Matthew W. Tellman, from the Indiana University School of Medicine in Indianapolis, and colleagues conducted a systematic literature review of the etiology and management of pain in autosomal dominant polycystic kidney disease and anatomy of renal innervation.
The researchers found that for most patients with autosomal dominant polycystic kidney disease, pain occurs due to renal, hepatic, and mechanical origins. Patients may experience different types of pain complicating confirmation of etiology. Anatomical and histological assessment of renal innervation can help elucidate the mechanisms that can lead to renal pain. A stepwise approach is recommended for management of pain in autosomal dominant polycystic kidney disease. Due to the high incidence of acute causes of renal pain in autosomal dominant polycystic kidney disease, these must be ruled out first. Non-opioid analgesics and conservative interventions can be used first for chronic pain, before considering opioid analgesics. Surgical interventions such as renal cyst decortication, renal denervation, and nephrectomy can target pain from persistent renal or hepatic cysts.
"Chronic pain in patients with autosomal dominant polycystic kidney disease is often refractory to conservative, medical, and other noninvasive treatments," the authors write.
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