Dallas Community Leader to Host Gratitude Benefit Honorees
Hawkins, a community leader in Dallas, and chairman of HKS Architects, will host a reception at his company on October 30 to honor those who will receive awards at the second annual Gratitude: A Celebratory Benefit for the PKD Foundation. He is also the incoming chairman of the Dallas Regional Chamber.
"I was invited to host a reception by the PKD Foundation," he explains. "I'm very interested in the advances being made in kidney disease research and the Foundation is taking a very active role, which I'm happy to support."
While he doesn't have PKD, Hawkins does live with a kidney transplant as a result of Alports Syndrome. This year marks his 20th year post-transplant.
But Hawkins emphasizes that transplants aren't the long-term answer. He feels strongly that research is the best solution to stop the disease for good.
"Genetic research is making huge inroads right now," he continues.
Hawkins is also appreciative of the role the PKD Foundation plays in raising awareness of PKD.
"Kidney disease is more prevalent than most people realize, but it's a silent disease," he shares. "I would like to see the nation more focused on treatments and a cure.
"The PKD Foundation is doing a great job of gaining attention for kidney disease and supporting the people who live with it."
A Reception to Meet the 2015 Gratitude Benefit Honorees
Thursday, October 30, 5 to 7 p.m.
PKD Awareness
From News Wire Canada, PKD Foundation of Canada
Speak to Canadians fighting a life-threatening kidney disease
TORONTO, Sept. 4, 2014 /CNW/ - While 46-year-old Cheri Barton looks like she is nine months pregnant, she isn't.
Cheri has autosomal dominant polycystic kidney disease (ADPKD), a life-threatening, genetic disease that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys (up to three to four times their normal size) and can impact the function of surrounding organs, like the liver.1 ADPKD can also lead to deterioration of kidney function and in some cases, kidney failure.2
Weighing approximately 35 pounds combined, Cheri's enlarged kidneys and liver constantly push up against her abdomen and other organs, resulting in hernias, frequent pain and discomfort. Her kidneys are functioning well below average, and without treatment to help slow the progression of the disease, Cheri will likely end up on dialysis or in need of a transplant. Cheri is among the 35,000 to 66,000 Canadians who have ADPKD.3
"PKD Awareness Day, for me, is an opportunity to raise awareness about a condition few people know about," says Cheri. "This is a condition that not only affects the individual, but their family as well."
Cheri is available for interview and can speak to how ADPKD has impacted her life and what she is doing to help manage the condition.
Jeff Robertson, Executive Director, PKD Foundation of Canada is also available for interview and can speak to how ADPKD has impacted his own family and what his organization is doing to help make a difference.
For more information about ADPKD and to find out more about what the PKD Foundation of Canada has coming up, visit endpkd.ca. [Read more]
Thousands of Americans and people worldwide are living with Polycystic Kidney Disease but the good news is there is hope! Joining us to talk about PKD and how you can help find in finding a treatment and cure for it are Dr. Adam Bingman with Methodist Specialty and Transplant Hospital, Shonale Burke, and Patti O'Grady Ruffin.
SAN ANTONIO WALK FOR PKD
OP SCHNABEL PARK
GRAFF PAVILION
SEPT. 13, WALK - 8:30 A.M.
1.800.PKD.CURE
FOR MORE INFORMATION:
walkforpkd.org/sanantonio
pkdcure.org
Kidney Donations
Randy Daniel needs a kidney.
The lifelong Jonesboro resident has been fighting polycystic kidney disease his whole life.
He was diagnosed at 15 and now at 58, his kidneys do not function.
PKD is an inherited disorder that causes clusters of cysts to develop on the kidneys, according to the Mayo Clinic website. In Randy’s case, he did not inherit it. A gene mutation is the source of his disease.
“There’s no reason for him to have it,” said Randy’s wife, Pat Daniel. “He’s 1 percent of the total people who have it.”
As a result, he attends dialysis three times a week for several hours. The machine filters out toxins, waste and extra fluid in the blood — just like real kidneys.
But dialysis comes at a cost physically.
“Dialysis put a strain on the heart muscles and many people die from a heart attack,” Pat said.
To gain access to his body’s blood, Randy has a fistula on his upper right arm. A fistula is created when doctors join an artery and vein to make a large blood vessel.
Two 14-gauge needles, about .083 inches, are inserted into the vessel. One removes the toxic blood, pushing it through a filter, while the second sends the blood back into his system.
The treatments leave him feeling sick, most times nauseous, and tired.
I’m usually wiped out,” Randy said.
Dialysis also leaves him feeling thirsty. Because his kidneys do not function at all, Randy has to watch his fluid intake closely. He can only have 32 ounces per day.
“I crave water so badly,” Randy said. “Sometimes I’ll wake up in the middle of the night and my mouth is so dry.”
His diet is also limited. Pat said there are many restricted items including mundane foods like lettuce and cabbage.
“The body turns the food into liquid,” she said.
Fluid becomes his enemy. Twice this year, Randy has been hospitalized with pneumonia because too much liquid has accumulated in his lungs. Despite this, Randy said he is blessed to have the machine.
A new start
In 2003, Randy had a chance at a new start to life. He received a kidney from his cousin.
“I’ll never forget how good I felt,” he said. “I can’t describe the feeling.”
He said everything was brand new and he felt so good that he was up walking around just hours after surgery.
“I was so thankful for the kidney,” he said. “I still hit my knees every day for it.”
Following the donation, he was taking immuno-suppressant drugs so his body would not reject the new organ. Six months later, he was infected with West Nile virus which damaged the kidney and ultimately led to its failure in 2007. Since then, Randy has depended on dialysis to keep him alive. [Read more]
Organ donation is eventually the only option for people with polycystic kidney disease
Averell Childs figures he’ll die young.
He expects something called autosomal dominant polycystic kidney disease, or PKD, will take him.
Living with it is a burden, but he does what he has to.
“A lot of people plan their retirement and what they are going to do with their golden years. The realist in me knows that I don’t have that option. I’m probably going to die at a young age,” he says. “I know that’s going to be the long-term impact.”
Today is the first National PKD Awareness Day. Canadians are sharing their plight with a disease that starts with cysts on the kidneys.
“The cysts grow and burst and create scar tissue,” explains Childs. “Eventually scar tissue becomes the dominant part of the kidney and it renders the kidney less functional to the point where it becomes non-functional.”
The 49-year-old Conception Bay South resident discovered he had PKD in his late teens or early 20s after he started suffering gout.
His dad suggested it was part of the disease “they” have.
PKD is hereditary and it eventually claimed his father. It’s also taken his grandmother and other relatives. His 50-year-old cousin and friend was recently put on dialysis with it.
“For the most part, it’s a disease that’s fatal at some point,” says Childs, who’s originally from York Harbour, a west coast community where PKD is well-known.
But rather than give up, he’s doing what he can to manage the disease and live a regular life.
He eats healthily, watching portions as well as salt and protein intake.
“I’m the guy at the grocery store picking out the smallest steak,” Childs jokes.
Childs also hits the gym regularly. He’s among a fitness minority — he actually enjoys the treadmill.
“I’m a big believer in the fact that regular exercise is a good medicine for anything that ails you,” he says. “I’d like to think it’s helped me control my blood pressure, which is one of the things they try to get you to do to manage PKD.”
There’s no cure or treatment. A kidney transplant is the only possible option. [Read more]
Tallahassee Democrat, by Helen Schwarz
Editor’s note: Helen Schwarz, administrative manager for the Tallahassee Democrat newsroom, has polycystic kidney disease and had a kidney transplant, followed by additional surgeries, in late 2013 and early 2014. The disease affects about 600,000 people in the United States, according to the National Institutes of Health. This is an update on her ongoing journey to health.
A year ago, on Sept. 4, I wrote an article on polycystic kidney disease for PKD Awareness Day telling you about this silent killer and how I was fighting for my life. Today I am updating you on my story and my battle with PKD.
In July 2013, Tallahassee Democrat Executive Editor Bob Gabordi wrote a blog asking the community to help save my life by becoming a living donor. (Thanks, Bob, for being on my lifesaver team). A very kind and generous man quietly responded and gave me another chance at life.
Bob Mayo (Padre) donated one of his kidneys because he felt called by God to help me. I did not know Padre until I met him after I returned to Tallahassee after my kidney transplant. He is a very humble person who wanted no super-hero recognition, but he is a super hero in my mind for giving up one of his kidneys to me, a complete stranger.
On Nov. 1, 2013, at the University of Maryland Medical Center (UMMC), I underwent a double nephrectomy and kidney transplant. My polycystic kidneys were removed, each weighing about 7 pounds, about the size of two newborn babies. I lived in temporary housing in Baltimore near the University Medical Center for six weeks for follow-up care while adjusting to more than 14 daily medications to keep my body from going into rejection.
Finally, I was able to return home Dec. 15. I was grateful to be home and enjoyed the holidays with my family.
In February, I started to swell and wasn’t feeling well. I went to Baltimore for my three-month check-up. I was immediately admitted to the hospital on Feb. 9. My kidney was starting to fail, not because of rejection, but because of polycystic liver disease (PKL). The weight and size of my liver was crushing my donated kidney. On Feb. 14, I was told I was dying, and if I left the hospital I would be sent back to Tallahassee under hospice care. [Read more]
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