Living on the edge: Life on the organ donor wait list
Posted Sep 16, 2010
BY JAMES RUBEC
Editor's Note: Organ donation is an important issue today. In this, the first of a three part series, the EMC's James Rubec explores what it's like to live on the organ waiting list, how it feels to live through a donation, and the reality of those who realize the sad consequences of a wait list too long. Watch future editions of the EMC for more on this important issue.
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EMC News - David Presley didn't know it, but he only had days left to live.
"It started in the fall of 2007," said his wife Lynn Presley. "David seemed a little bit off. We took him to our doctor to get him checked out."
Ms. Presley is the current president of the Super Ex while her husband is the former president of the Super Ex.
"Our doctor, Don Doogle, took some blood tests, and sent us on our way," Ms. Presley said. "We really didn't think that anything was going to come from it."
But something did come from it, and two weeks before a long due vacation, the Presleys received a call.
"We went into Dr. Doogle's office and he told us that David's kidney was failing, and that he was going to need a transplant," Mrs. Presley said.
Mr. Presley has been waiting for a kidney now for three years. When he was put on a list, he joined 1,111 other people currently on the wait list for a kidney.
"It has all been so overwhelming, learning about renal failure, kidney disease and even about diabetes."
Kidneys are each about the size of a fist and they play three specific roles. The kidneys, like a water filtration plant, remove waste products from the bloodstream, toxins, heavy metals and anything that isn't supposed to be there. They produce hormones that regulate blood pressure and the production of red blood cells. Similarly they also regulate the level of minerals that are in the body, like sodium or calcium.
When the kidneys aren't functioning properly, toxins begin flowing through the body more freely instead of the flowing out the body naturally. The toxins impact every organ in the body, making them function poorly or stop working all together.
In the beginning, kidney failure can be hard to spot, having no symptoms to recognize. But, as the kidney function declines, a person's ability to regulate water and minerals can make them seem anemic. They may appear to be more tired than usual, but the signs of illness progress quickly after that.
"I was told in two cases that I had only days to live," Mr. Presley said. "If they hadn't gotten me stabilized and into treatment at that point, I would have died."
Mr. Presley has been living through a careful process of dialysis. There is more than one type of dialysis. Typically people think of a large machine cleaning your blood, but today there are more options out there.
"I do peritoneal dialysis. I sit down and drain my peritoneal cavity and fill it again four times a day, with different types of peritoneal fluids that have different concentrations of chemicals that clean my body," he said.
The peritoneal cavity is the space in your body where your organs sit. Typically you don't have liquid in this space, but in Mr. Presley's case he does. Because his kidneys don't work, this liquid removes the waste from his body for him. Mr. Presley has a catheter on the front of his stomach leading into his peritoneal cavity. Every time he needs to drain his cavity and fill it again he carefully washes his hands, then he uses a sanitizing jell before he pops the cap off of his catheter. He then clips his catheter into an empty bag while his cavity drains out, and the fluid, which is full of his body's waste, flows into the empty bag. The process is painless, and takes a total of two hours a day. He uses four bags a day, and this is what is keeping him alive.
"It will be three years in November," Mr. Presley explained.
He said he remembers thinking about dialysis as this big scary monster, but now feels it is something he can do in his car, something he shows his friends and something he feels comfortable describing during seminars.
You wouldn't know the extent of the illness by looking at him. Mr. Presley is a tall man, his colour is good, and his energy high but if he were to lose control of his diet, or forget to wash his hands while changing his fluids, things could go wrong quickly.
On Wednesday, Aug. 18, Mr. Presley had a pain in his stomach and the colour in the bag that he empties his fluids into was cloudy. He had to go to the hospital and get antibiotics before the infection got out of hand.
"I could stop doing this if there was a kidney for me. It isn't something you want to push on people but it would make my life a whole lot easier," he said.
The Presleys have taken up "the cause," as they call it. On Aug. 23, they held their annual Organ Donor Day to help inform people about the need for organ donation and to sign a consent form required by the Ministry of Health to confirm that a hospital knows your wish to donate.
This is the major barrier to getting the 1,111 people off the kidney waiting list. People just don't donate often enough. For those that do, the decisions they make means the gift of life for others.
"My daughter was 32 when she died," said Emile Therien, a member of the Council of the College of Physicians and Surgeons of Ontario, and father of the late Sarah Beth. "She died of sudden cardiac arrest, caused by a hidden bowel problem."
While Sarah life ended on June 17, 2006, her death has helped save or greatly improve the lives of 246 other people. The first four were directly as a result of the use of her organs. Sarah, a tall strong brown haired girl, had her kidneys donated to two other people, both of them who now live full and productive lives. Corneas were donated to two women who gained full sight as a result.
"It wasn't just that the organs were used, it's how they were taken from her body that was the breakthrough," said Mr. Therien. "She became a medical pioneer."
Before Sarah death, organs could only be harvested from those who were declared brain dead, versus death through cardiac means. But technology turned the corner at just the right time, making Sarah's donation the first of it's kind.
"These types of injuries are rare, Sarah was the first donor who suffered cardiac death," Mr. Therien added.
In Ontario, 80 cardiac death donors have now had their organs transplanted affecting the lives of 246 people, many given kidneys, others gaining a new pancreas, or heart valves. In 2009 alone, organ donation increased in Ontario by 19%
Mr. Therien told the story of his daughter quite easily, he and his wife Beth share that story as often as they can. But, Mr. Therien becomes more emotional when he speaks about the impact of this new procedure.
"You can actually quantifying this, do you know what I mean? You can see results," he said.
To donate your organs, signing a card when you renew your driver's license is simply not enough. Families can easily override that wish. A more direct way to make your wishes known is to fill an organ donor form through the Ministry of Health.
If you are 16 years of age or over, you can resister your consent to donate your organs and/or tissues upon your death. Complete a Gift of Life Consent Form and submit it to the Ministry of Health and Long-term Care, which keeps a registry of donors.
Download a form at
www.health.gov.on.cajrubec@theemc.ca
http://www.emcottawasouth.ca/20100916/news/Living+on+the+edge:+Life+on+the+organ+donor+wait+list
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