From Huffington Post, Canada, by Paul Kidston National President of the Kidney Foundation of Canada
The statistics are shocking. one in 10 Canadians has kidney disease and millions more are at risk. Yet, many don't even understand what kidneys do. I certainly didn't understand anything about kidneys until I was personally impacted at a young age.
I watched my father, brother and sister deal with failing health and the grueling treatments of kidney disease. I'm the only one of my father's children without kidney disease. I see the ramifications of kidney failure on a daily basis through my volunteer involvement with The Kidney Foundation of Canada.
My family's PKD story
Polycystic kidney disease (PKD), a genetic kidney disease, ripples through my family. I first heard about kidney disease when my father was diagnosed with PKD -- and later died from complications of a kidney transplant. Those with ADPKD have a 50 per cent chance of passing it on to their children and in my father's case, it was passed on to both of my siblings.
My brother recently passed away from kidney failure, and my sister has just received a kidney transplant. I can say from first-hand experience that families impacted are consumed by this disease.
Five things you need to know about polycystic kidney disease (PKD):
1. It is one of the most common, life-threatening genetic kidney diseases.
2. There are two forms: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).
3. It causes multiple cysts to form on the kidneys, causing them to become very large and kidney function to decline.
4. Early intervention is important to preserve kidney function.
5. A few recognizable symptoms include high blood pressure, lower back pain, blood in the urine and kidney stones. If you're experiencing these symptoms, speak to your doctor.
Through the Foundation and my family, I've seen that those living with kidney disease often progress to an unbearable pain that no one can see, and eventually need dialysis or a kidney transplant -- that is if they're eligible and if they can find a suitable donor. I've seen those living with kidney disease suffer in isolation because they don't want to talk about it or have a hard time communicating what it is like living with a disease when you appear to be healthy from the outside.
This is why we need to continue our fight against kidney disease.
What we're doing to help
The Kidney Foundation of Canada is in the midst of wrapping up its kidney walks in some provinces. The walks are Canada's largest event dedicated to raising funds for kidney research and programs that help support Canadians living with kidney disease. It's events like these that help the Foundation support those who need it most: patients and families.
These walks from coast to coast also build a kidney community and help those impacted feel less alone and give them a more positive outlook on their disease. It is these events that bring patients together with a collective voice to feel empowered and engaged to take action. [Read more]
Our family, along with so many others throughout the United States (600,000) and the world (12.5 million), has known how this genetic disease has taken the lives of loved ones because there is no treatment or cure.
Having been on dialysis myself, I received the gift of life from my younger sister, Dene Voigt Kyrish, almost 11 years ago. On July 4, my cousin, Dorothy Schnautz Bray, received a kidney after being on dialysis for more than four years. Numerous other family members are living with PKD, including our son, Todd, and our son, Jon Sunday, who started dialysis in February. We all await the day that he, too, will receive the gift of life.
The process of finding a treatment and/or cure is the ultimate goal of the PKD Foundation. It is currently funding 15 research grants. A study of the drug Tolvaptan (brand name JINARC) has shown that it slows the growth of cysts on kidneys; however, the FDA is requiring more study before it can be used in the United States. It has already been approved in Japan, Canada, and Europe.
We invite everyone to the walk on Sept. 10. Free registration begins at 7:30 a.m., with a Penny Kids Dash at 8:15 a.m., followed by the opening ceremonies led by KENS 5 early morning co-anchors Sarah Forgany and Barry Davis. The 1K or 3K Walk/Run starts at 9:15 a.m. There will be free food pre- and post-walk. Registration and donations to our team may be made at walkforpkd.org/sanantonio.
About PKD
Polycystic Kidney Disease (PKD) is one of the world’s most common life-threatening genetic diseases. It causes cysts to form on the kidneys, and ultimately causes kidney failure. There is no cure or treatment. Once diagnosed with end-stage renal failure, the only options are dialysis or a kidney transplant.
For more information, visit https://pkdcure.org.
From Inside Ottawa Valley, Canada
As the disease worsens, PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure, necessitating ongoing kidney dialysis or a transplant to prolong life. People with polycystic kidney disease have a higher risk of aneurysm, especially those younger than age 50.
Although kidneys usually are the most severely affected organs, Polycystic Kidney Disease can cause cysts to develop in your liver and elsewhere in your body. Although a cure for PKD is not available, significant progress in research of PKD has been made and novel treatments are available to ease symptoms and delay the progression of the disease. Lifestyle changes and medical treatments may help reduce damage to the kidneys from complications, such as high blood pressure. As many patients will require kidney and or liver transplants, the requirement for registering as an organ donor becomes more important. For more information see:www.kidney.ca/polycystic-kidney-disease, www.endpkd.ca or www.beadonor.ca
The Perth and Smiths Falls Kidney Walk, sponsored by the Kidney Foundation of Canada is to be held Sept. 11 at the Crystal Palace. Registration starts at 10 a.m.
Join us and walk for a friend or relative.
Helping those with PKD
Community State Bank employees donate vacation time to dialysis patient
Across Kenosha County, dozens of Community State Bank employees got one fewer vacation day than normal this summer. They missed out on a day at the beach, or a fishing trip, or the rides at Six Flags, because they putting a co-worker first.
This year, the bank’s employees donated 96 days of their own vacation time to help Community State Bank Market President Kelly Huston, who is suffering from polycystic kidney disease. Huston’s condition is slowly getting worse; he is currently on dialysis, and without a new kidney, he will die.
“We talk about family first all the time, and we look at that as our extended family and internal family,” said Community State Bank President and CEO Scott Huedepohl. “People here care for each other. The vacation thing is the result of some employees saying, ‘We haven’t done enough to help one of our family members.’”
Huston has to leave work early to do dialysis three days a week, but the generosity of his co-workers means he can focus on his health and worry less about finances.
“They’ve been incredible,” Huston said. “It’s so unique here. I know for a fact that none of this would have happened (at my previous job).”
Six-year battle
Huston was diagnosed six years ago, when he was 49. The pain struck like lightning; one minute, he sitting at his desk in Paddock Lake working, and the next moment he could barely stand.
After an agonizing 24 hours and an incorrect diagnosis of gas, doctors realized he was bleeding internally and rushed him into surgery. The devastating diagnosis of polycystic kidney disease came next.
Since then, he’s had several surgeries. In March, he became so ill that he could barely walk to his car. He was suffering from nearly constant pain and nausea. That’s when he started dialysis, which did not help instantly. He had to have three surgeries before dialysis really started to work.
Still, it’s in his nature to be positive, and he’s named his dialysis machine at Fresenius Kidney Care “Charlie.”
“Dialysis is not fun by any stretch, but I am very thankful for that machine that keeps me going,” he said. “It hasn’t been easy for me. I’ve bled all over the place, thrown up many times, but the the staff there has been beyond belief. They’ve gotten me to this point today.”
That’s the sort of “glass half full” Kelly-ism that motivates co-workers to help, Huedepohl said.
“It’s one of the reasons we decided to do this. Kelly is such a positive and humble person,” Huedepohl said.
Donor needed
Right now, Huston is focused on staying as healthy as he can to make sure he’s ready for a kidney when a donor is found. Many of his relatives and friends have been tested to be potential donors, he said, but all have been excluded because they’re incompatible or not healthy enough.
Huedepohl has tried to help the cause by writing a blog encouraging readers to flip over their driver’s licenses and make sure they’ve filled out the “Anatomical Gift” area.
The need is great; nationwide, 100,000 people are waiting for kidneys, and every day 13 die. There are 2,000 people in Wisconsin waiting for a kidney donation.
“Our best goal is somebody tests to give a kidney to Kelly. But the easy goal is if we can get a thousand people to sign the back of their driver’s licenses, there might be somebody who saves a life,” Huedepohl said. [Read more]
Organ Donation
There is no market for organs, so my title itself is misleading. US Code, Title 42, Chapter 6A, Subchapter II, Part H, Section 274e states:
It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. The preceding sentence does not apply with respect to human organ paired donation.
Persons violating this law “shall be fined not more than $50,000 or imprisoned not more than five years, or both.”
So, in order for market forces to be introduced into the organ donation market, the law would have to be changed. The bit above regarding paired human organ donation is discussed in this fascinating episode of Freakonomics radio about systems of exchange where money isn’t allowed to trade hands… for instance, in organ donation. So the question becomes: How can we go about doing that?
The first thing we need to tackle is why this law exists in the first place. Ever since organ transplantation became a viable technology there have been people who have been opposed to it for a variety of reasons, starting with religious/spiritual objections, all the way down to the “ick” factor. This in turn has led Congress to pass this law in order to allay people’s fears that the poor could be exploited or that predatory doctors with rich benefactors in need of an organ would prowl the various sick wards of a hospital in search of desperate people in need of a quick buck.
In fact, the “predatory doctor” fear is one of the greatest concerns cited by people when asked why they won’t sign an organ donation card. To be fair, it is a fairly horrific thing to contemplate (as the plot of several horror films attests) a doctor assessing your body as a butcher might a hog. So, there is a well-established cultural taboo backing this prohibition. We don’t allow people to treat their organs as being “fungible” in the same way that money is.
The trouble comes when considering the unintended negative consequences of the ban. As a result of the fact that money can’t lubricate these sorts of transactions the market is “sticky” — there aren’t enough organs to go around because normal people don’t want to give up a perfectly healthy kidney in exchange for the satisfaction of a job well done and a not-inconsiderable amount of post-operative pain. However, the real unintended consequence comes in terms of lives lost and dollars spent.
Medicare spent $57.5 billion dollars on kidney dialysis in 2009 – an average cost per patient of $72,000 per year. 13 people die every day awaiting a kidney which never arrives. These are real costs – and ones we should be sensitive to.
By comparison, a kidney transplant costs Medicare about $106,000 for the first year and about $17,000 in maintenance each year thereafter. Keep in mind these were 2009 dollars and the costs are surely higher today. While it doesn’t take a genius to see that public health dollars would be better spent on transplants than dialysis, particularly considering the medium to long term, that also ignores the vast improvement in the quality of life which the recipients get from not having to live their lives around dialysis centers.
So how do we get from here to there? First we have to overcome people’s justifiable fears of exploitation. The paired-donation concept goes part of the way towards accomplishing this by allowing a person in need of a kidney to access a much broader range of potential donors, as a person who isn’t them can donate an organ in their name to a third party in exchange for a matching organ of their own. It’s totally voluntary. But this still limits the universe of potential donors to the family and (deeply committed) friends of those who need a kidney themselves. In order to better satisfy this need a broader net needs to be cast.
To that extent, I would propose that the current prohibition be lifted, and replaced with a system that works like this:
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