From Yahoo Finance
Gene and His Big Dumb Kidneys Launch Search for a Living Donor
Gene Okun, a 50-year-old renewable energy consultant and former competitive body builder, lives with polycystic kidney disease (PKD), a genetic disease that causes uncontrolled growth of cysts in the kidney and can eventually lead to kidney failure. Since receiving a diagnosis of PKD, Gene's kidneys have grown big (doctors say they may be the world's biggest) and dumb (since they're now only functioning at 18%). Today, Gene and his big, dumb kidneys launched a new campaign to raise awareness of kidney disease and the life-changing impact of becoming a living kidney donor. With help from his family and friends, Gene introduced BigDumbKidneys.com to inspire people to learn more about PKD and kidney donation."Polycystic kidney disease varies greatly in its severity, and there are a number of symptoms and complications associated with this disease," said Terry Watnick, M.D., from the University of Maryland School of Medicine. "Raising awareness of PKD and the need for a drug treatment is important. I hope more people understand the impact the disease has on patient lives."
Gene's large and low-functioning kidneys quite literally get in the way of normal activities. Daily routines like eating, sleeping and even a simple hug are extremely difficult. The Big Dumb Kidneys campaign videos bring to life specific instances that can be awkward and uncomfortable with the constant accompaniment of two big and dumb kidneys.
"We applaud Gene's efforts to raise awareness for this severe, life-threatening disease," said Andy Betts, CEO of the PKD Foundation. "Our mission is to find treatments and a cure for PKD and to improve the lives of those it affects. We do this through funding programs of research, education, advocacy, support, and awareness on a national level, along with direct services to local communities across the country. We look forward to working together toward a new treatment."
Currently, more than 93,000 people are waiting on kidney transplant lists in the U.S. The wait for a deceased donor could be five years, and in some states, it is closer to 10 years – time that Gene and his kidneys just do not have.
"For many years, I watched my father struggle with PKD, the burden of relying on dialysis, and the many complications of this genetic disease that eventually contributed to his passing," said Gene. "My dad always made the best of every situation. I'm determined to do the same by motivating people to learn about kidney disease and the process of becoming a living kidney donor. People have questions about becoming a donor. With help from my big, dumb kidneys, I want to give them information and help connect them with people in need."
"I don't want to lose my brother the same way I lost my dad," explains Gene's sister, Tina Okun. "We have a big goal – to find Gene a kidney, to keep him healthy and alive, so that he can continue to make a difference in this world."
To discover more about becoming a donor or to help Gene in his search for a live kidney, please visit BigDumbKidneys.com or follow on Facebook and Instagram @BigDumbKidneys and with the hashtag #BigDumbKidneys.
Gene's Big Dumb Kidney Campaign
I launched this Big Dumb Kidney campaign with my sister Tina to find a living kidney donor and raise awareness of polycystic kidney disease and other kidney diseases that affect millions of men, women and children in the U.S. and around the world.
We are grateful to our friends, families, colleagues and business partners who are contributing their creativity, energy and skill to make this campaign possible. We especially recognize the people at SmithSolve, Second Melody, The O'Hara Project, Dave Patino Photography, SmartWorld Coffee, and the talented actors who portrayed my kidneys: Dumb and Big. We would also like to thank the dozens of physicians, donors, recipients and leaders of patient organizations who are providing input, advice and support on this journey.
Together we can find a living kidney donor and help others fight kidney disease. Thank you in advance for your blessings and prayers.
From The Vancouver Sun, Canada
'It's a big ask': Hundreds of kidney donors needed in B.C.
Glenn Miller needs a new kidney. But so do 513 other British Columbians.
The single dad from Pitt Meadows was born with polycystic kidney disease, the same genetic condition that required his mother to undergo a kidney transplant 25 years ago.
Miller, 51, works in sales and is raising 10-year-old twin boys while in end-stage renal failure.
The next step is dialysis and the years-long wait list for a deceased donor’s kidney — unless, doctors say, he can find a living donor.
“Once this started, I’m told I had to find somebody,” said Miller. “It’s a big ask to ask a friend, to say, ‘Hey, what do you think about giving me a kidney?’”
He has asked a few close friends and family members, but without success.
His girlfriend of five years, Cindy Seitz, volunteered to give him one of her kidneys but she was disqualified as a donor because a CT scan found cancer in her liver.
A couple of years ago, Miller put out a plea on Facebook. No one responded. Embarrassed, he deleted it a few days later.
Now he’s trying again, bolstering the ask with a shareable photo of himself and some basic information: age, blood type, a link to his website and the query: “Got kidney?”
Kidneys are the most wanted organ in B.C. Out of the more than 600 people on the province’s transplant list in 2016, about 80 per cent were waiting for a kidney.
Appeals like Miller’s have become increasingly common, partly because of how people communicate in the social media era, but also because of an increased push by doctors to get patients with chronic kidney disease a new organ earlier in care — before they go on dialysis or on the list for a kidney from a deceased donor. B.C. Transplant says it’s trying to increase its live kidney donation numbers.
Studies show living donation leads to better health outcomes for the recipient and significant savings for the health-care system as the patient avoids or gets off dialysis, which costs about $80,000 a year.
While the number of transplants using a kidney from a cadaver has almost tripled from 63 to 173 over the last decade in B.C., the number of transplants using a kidney from a living donor has stagnated over the same period. Last year, 95 such transplants were performed, compared to 110 in 2015. The 10-year average is 109.
The shift toward living donation puts the onus on patients to find their own donor kidney.
For some, it’s a tough ask.
“Some people are very comfortable, but other people are very reluctant to ask,” said Dr. David Landsberg, provincial medical director of transplant services for B.C. Transplant.
“Part of our strategy is to work with patients and their families for strategies on donor outreach,” he said. “How do you frame the question? How do you get the word out and not make people feel uncomfortable or obligated and potentially jeopardize relationships?”
Some people, after trying family members or friends, turn to public appeals. Public solicitations may get a lot of attention, but it is unclear how effective they are at finding a successful donor.
There are drawbacks, such as a loss of privacy. Public appeals also raise issues of fairness, said Landsberg, in cases where “someone has a very compelling story that might be more attractive to the public than somebody who doesn’t … Typically, if it’s a child, for example, we get lots of calls.”
Last fall, the Canadian Society of Transplantation produced a position paper acknowledging issues around public solicitation, but concluded the benefits outweighed the concerns. It was “ethically and legally acceptable” for transplant programs to consider potential living organ donors found through public solicitation so long as there is no financial gain involved, it said.
Heather Johnson, program director of the B.C. and Yukon chapter of the Kidney Foundation of Canada, encourages all types of appeals, including public solicitations.
“We would say whatever works,” said Johnson, whose organization is working to increase donation rates by 50 per cent in five years.
“You got to get creative” to get the message out, whether it’s on social media or on a personal blog, on a T-shirt or a funny pin that kickstarts a conversation about kidney donation, she said.
“I don’t think there’s a problem as long as there’s no financial concerns (buying and selling organs is illegal in Canada) and there is informed consent.”
Landsberg says it is rare for solicitations to lead to a donor who is a complete stranger. “People are much more likely to come forward when there is a connection,” he said.
In 2013, Victoria’s Kevin Campbell took to wearing a T-shirt emblazoned with “I need a kidney.” He eventually found a donor, a distant relative who lived in Alberta, through social media.
Another family who lived in Metro Vancouver took out an ad in a paper looking for a donor for their three-year-old child. In the end, a family friend came forward.
In a recent case, Castlegar mom Jana Tremblay put out a Facebook post searching for a donor for her 14-year-old son Zach. Her post was shared more than 7,000 times. A former childhood friend with whom Tremblay reconnected on Facebook offered to donate her kidney to the teen. The transplant is scheduled for June.
The number of unrelated donors in living kidney donations is on the rise, said Landsberg.
In 2015, 44 per cent of living kidney donors were biologically related to the recipients, 43 per cent were unrelated, and 13 per cent were part of kidney paired exchange donations, which are kidney swaps that occur when a living donor is incompatible with the recipient and exchanges kidneys with another donor/recipient pair. In 2006, 65 per cent of living donors were biologically related to the recipients and 34 per cent were unrelated.
Anonymous donations, or donors who give up their kidney without a recipient in mind, are rare. Last year, only three such transplants were performed in B.C., and six in 2015. [Read more]
My uncle was a vibrant self-made man who made the most of his life, before kidney failure (related to his diabetes) resulted in agonising regular dialysis sessions that he hated. However, it was not enough to save him.
Like me, there are many people out there who have lost a loved one to CKD, or perhaps know of someone who is suffering from this disease.
The public should be aware that the number of cases of CKD has been on a rise in Malaysia. According to the 22nd Report of the Malaysian Dialysis and Transplant Register (2014), there has been over
100% increase in the number of new dialysis patients in Malaysia over the past 10 years.
At the end of 2015, nearly 40,000 Malaysians required regular dialysis, with 90% of them requiring haemodialysis treatment three times a week.
Nephrology specialist Dr Wong Mun Hoe (top right, inset) from Pantai Hospital Klang, who is also a certified member of the Renal Board (Malaysia), sheds some light on this serious medical condition during an email interview.
What are the common causes of CKD? Who are the people at risk?
"According to the Malaysian Dialysis and Transplant Registry (MDTR), the most common cause of kidney failure among patients who are on dialysis is diabetes mellitus. This is followed by hypertension.
"Other causes include kidney stones, glomerulonephritis (acute inflammation of the kidney, typically caused by an immune response), polycystic kidney disease (numerous cysts growing in the kidneys), and drugs.
"People who are at risk of CKD include the elderly (above 65 years), and those with diabetes mellitus and hypertension."
What are the symptoms we should be looking for?
"Unfortunately, only kidney failure at its most severe form will present with symptoms.
"These include poor appetite, nausea, vomiting, difficulty breathing, leg swelling (usually both legs), and [fatigue].
"Most patients do not usually have these symptoms in early stages of CKD."
Is CKD reversible?
"The term, chronic kidney disease, denotes that this is a long-term problem and not reversible.
"CKD is classified into five stages – one being mild, and five being severe – and will require renal replacement therapy."
Do genetics play a part?
"Polycystic kidney disease (PKD), as a cause of CKD, has a genetic predisposition. Diagnosis is made using a specific criteria.
"The nephrologist will usually screen family members if one of them is found to have this condition."
It is said that those undergoing haemodialysis generally are living on borrowed time. Is this true, and if so, why?
"I would say the patients who undergo haemodialysis are given a second chance at life.
"Not everyone is suitable for haemodialysis, and the nephrologist has to evaluate each patient individually to determine the most suitable modality for renal replacement therapy (haemodialysis, peritoneal dialysis, kidney transplant or conservative therapy).
"Besides extending the life of an individual, we also take into account the quality of life of the patient after the initiation of dialysis."
How safe is a kidney transplant?
"Kidney transplant is the best option for renal replacement therapy, and provides best long-term survival.
"Malaysia has been performing kidney transplants since 1975. One cannot deny that there are risks (surgical, anaesthetic, rejection of donor kidney, infection, etc).
"However, the long-term benefits outweigh these risks as the patients have the opportunity to live a normal life.
"Safety is of paramount importance. Recipients of kidney transplant and donors are carefully evaluated to reduce the risks.
"Kidney transplants are offered in government hospitals as well as some private hospitals."
Do products sold in the market to detox the body add strain to our kidneys?
"If you ask any nephrologist, there is no such thing as a drug/product/supplement that can cure or reverse kidney failure.
"It is sad that people take advantage of those with CKD by offering them an alternative hope which is deceiving and futile.
"Kidneys age with time, and chronic diseases such as diabetes and hypertension or non-prescription/prescription drugs can accelerate this process.
"Some of these unregulated compounds contain heavy metals, colouring, and preservatives which are harmful to the kidney and are not commonly tested until an adverse event has been reported.
"Common prescriptive drugs such as non-steroidal inflammatory drugs (NSAIDs) can also contribute to kidney damage."
What can we do to keep our kidneys functioning in a healthy manner?
"It is important to identify people who are at risk of kidney failure.
"Those aged above 65 years, have underlying diabetes mellitus, hypertension, or family history of kidney disease should be screened on a regular basis.
"Early treatment of CKD ensures longer survival of the kidneys.
"Avoid taking unnecessary supplements and abuse of NSAIDs.
"For those who are well, the general principles of healthy living including drinking plenty of water, a balanced diet and regular exercise will ensure that your kidneys continue to function in a healthy manner."
No comments:
Post a Comment