As of January 8, 2014 the latest findings from the national kidney foundation in America show that there are currently 120,990 people waiting for life-saving organ transplants in America.
One man who knows about this first hand is Patrick Bowler, a 43 year-old third generation Irish American whose family hails from various parts of Ireland. His parents were born in New York and he lives there now, in Queens. He is well known in the Irish community.
He recalls hearing tales of Ireland from his grandparents. Patrick opens up on his struggles to find a kidney donor and a chance at life to the Irish Voice and IrishCentral.
“On average, 18 people die every day while waiting for organ transplants in the U.S., and every 10 minutes, another name is added to the waiting list. In New York State, someone dies every 15 hours waiting for an organ transplant,” he says.
Patrick suffers from a genetic disorder which has affected three generations of his family including his father and grandfather.
“I’m very close to being placed on dialysis, I’m maybe three or four months away from it.
“There is a thing called Creatinine and creatinine clearance tests which measure the level of the waste product creatinine in your blood and urine. These tests tell how well your kidneys are working and sadly mine are not.”
Patrick says that his Creatinine levels have become increasingly high and as a result he is about three to four months away from being placed on dialysis. Once placed on dialysis Patrick will be forced to give up work.
Being placed on dialysis would mean he would be in hospital three times a week for up to four hours or doing the procedure everyday at home. “It’s a scary prospect,” says the Woodside resident.
Over the past two years Patrick has experienced an increase in the symptoms of the disease he has suffered with all his life.
“I sleep a lot now and have a restricted diet. I take a lot of medication, including blood pressure medication and sodium bicarbonate.”
“I take these medications because my kidneys are no longer able to filter the acid in food so the sodium bicarbonate acts as a neutralizer and regulates my acid levels.”
“My life is slowly becoming a list of things I have to watch, as in what I eat and drink and what medications I take.”
Unfortunately for Patrick, no one in his family is a suitable match for a possible transplant because of the genetic history of the disease in the family.
He told the Irish Voice, “For someone to be tested as a potential donor they must be in good health, not overweight and not pose any immediate health risks, unfortunately my family tick none of these boxes.”
Patrick watched his father battle the disease. He was on dialysis for 15 years. His father died at the age of 53 from heart failure due to the weakening of his heart due to his kidney disease.
Patrick is currently living with several cysts on his kidneys which continue to grow and receives regular iron shots to prevent the weakening of his heart.
“It’s very scary because I am living not in fear but with the fact that I soon will become even sicker, my kidneys are not filtering out the waste and this is going to lead to my deterioration.”
With his kidneys at 14% functionality, he knows that once that they drop below 10% it means dialysis and he finds this prospect terrifying.
A United States Army veteran who served for four years until 1992, he now acknowledges that he has considered every possible avenue to stay healthy and alive.
“You know that I have thought of everything. It’s a terrifying prospect to know that you are going to get sicker and there is nothing you can do to stop it.”
Donor organs are matched to waiting recipients by a national registry called the National Organ Procurement and Transplantation Network (OPTN). This registry is operated by an organization known as the United Network for Organ Sharing (UNOS), which is located in Richmond, VA.
Despite this system, 3,381 patients died while waiting for a kidney transplant. Patrick started a Facebook campaign, reaching out to people who may be willing to get tested as a potential life-saving donor.
However, the army veteran has not seen his wish come true. Instead the 43-year-old has been confronted with nothing but scam artists out to make a ‘quick buck’ out of someone else's misery.
One man approached Patrick after seeing the advertisement online and offered to get tested and give up his kidney if Patrick was willing to pay for his child's college tuition. People prey upon other people's vulnerability and desperation, says the third generation Irish American.
“It’s a lot of false hope and dead ends, but I know I need to find a kidney soon.”
Under the National Organ Transplant Act, it is illegal to provide anything of value in exchange for a human organ. The National Living Donor Assistance Center provides reimbursement that has averaged around $2,900 for travel and other incidental expenses, according to its website.
However, there is a black market of people willing to sell their organs for cash. This is the reality which Patrick can not afford to buy into nor does he wish too.
“While people may be desperate, it’s about remaining dignified in the face of great pain.”
The dangers of the underground organ market – a $60-100 million market – were illustrated in horrifying detail by a recent story in Bloomberg Markets.
The magazine found that U.S. citizens suffering from kidney disease were traveling to Nicaragua and Peru "to buy organs in a shadowy trade that injured and killed donors and recipients." The illicit trade reaches into Israel and the former Soviet Union as well.
It has been argued that the same problems would come to the United States if organ markets were able to operate legally.
For now Patrick Bowler continues to live his life as best he can, but he is fighting against the clock.
“It’s like a ticking time bomb in my life.”
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