From VolunteerMatch.org
Central Florida Walk for PKD
Are you interested in sharing your time and talent to make a difference in the lives of local PKD patients?
The Central Florida Walk for PKD could be the perfect fit for you. Join our local team of volunteers to help make a successful and memorable Walk! There are many different ways to get involved, whether it's in the planning process or the day of the Walk.To chat about ways that we can work together, contact Julie Russell at julier@pkdcure.org to start the conversation.
From Michigan City LaPorte, Northern Indiana
Saturday, September 17, 2016
9:00AM - 11:30AM
Walk for PKD.
Northern Indiana Walk for PKD – 2-Mile Walk Sat, Sept 17, 2016. Check in 9am; Walk 10am at Creek Ridge County Park – Michigan City, IN. For more information, please contact Walk Coordinator,northernindianawalk@pkdcure.org. Polycystic Kidney Disease (PKD) affects thousands of Americans and 12.5 million children and adults, worldwide. There is no treatment or cure, but there is hope. Walk, form a team, help with the committee, volunteer and more! Register online and take advantage of a host of effective and Free online team features like emailing members, tracking team progress and fundraising tools. Contact the PKD Foundation for more information on how you can help.www.pkdcure.org. Come join us.www.walkforpkd.org/northernindiana.
12:00PM - 2:30PM
Cruis'n For a Cure for PKD Car show and Car cruise.
Car Show and 40-mile car cruise, $10 per vehicle, all wheels welcome. Rain or Shine. Concessions, trophies, prizes, LaPorte County Fairgrounds.
Kidney Research
Christian Stackhouse is 12-years old and means the world to his mom, Lori.
"He's my little angel," said Stackhouse.
When he was young, Christian developed kidney problems and went on dialysis for several years.
"Three days a week, four hours a day," said Stackhouse. "You have to do what you have to do."
But a new advance in medical technology, could change the landscape for kidney patients
"A teeny tiny dialysis machine you wear around your waist," said Stackhouse describing the wearable machine.
Doctors are testing an artificial kidney you can wear on the outside of your body - no transplant required.
"It was surprisingly easy to wear," said Stackhouse.
New statistics from county health officials say chronic kidney disease is the tenth leading cause of death in Bexar County.
And the number of people needing dialysis in San Antonio has climbed in recent years.
"4,000 people are on dialysis," said Cathy Lewis, an educator at the San Antonio Kidney Disease Center.
The wearable kidney could help thousands of patients like Robert Reyes who has been going to dialysis for more than 30 years.
"It's going to be 36 in April," said Reyes.
"That would be a God send for people it really helps with mobility, freedom and independence," said Lewis.
But many will still require the dialysis procedure because patients would have to meet very specific criteria to use the artificial organ.
The wearable kidney requires FDA approval.
Patient trials are currently being run in Washington State.
The estimates are the device will be available to the public within 5 years.
Gift of Life
From NewsWise
MAYWOOD, IL – Susan Hou, MD, who altruistically donated a kidney to one of her patients and later became a recipient of a lung transplant, is among the transplant patients who will be honored April 21 during Loyola University Medical Center’s 25th annual Candle-lighting Ceremony.
The ceremony raises organ donation awareness for National Donate Life Month, pays tribute to organ donors and supports transplant patients.
The media are invited to attend the ceremony Thursday at 4 pm at Loyola’s Paul V. Galvin Memorial Chapel, 2160 S. First Ave., Maywood. Please park in the parking lot on the north side of campus. A media relations representative will meet you at the north door and show you to the chapel.
In 2002, Dr. Hou donated a kidney to one of her patients, a mother of two, who suffered kidney failure as a result of polycystic kidney disease. Twelve years to the day later, Dr. Hou became an organ transplant patient, receiving a donated lung to treat a life-threatening pulmonary disease that was unrelated to her kidney donation.
Dr. Hou is believed to be the only transplant physician in history both to donate an organ and receive an organ transplant, according to the United Network for Organ Sharing.
“Some people know they just have to do it, and I was one of them,” said Dr. Hou, who felt destined to be an organ donor. “If you believe in the brotherhood of man, there are no unrelated donors.”
The ceremony also will recognize three other remarkable organ donor patients.
• Heart transplant patient Donna Stout and double lung transplant patient Cassie Stanley received their organs from the same donor. Together they have given dozens of talks to high schools and other venues to raise awareness for organ awareness. In 2007, Ms. Stout received a transplant after experiencing sudden heart failure at the relatively young age of 49. Her donor heart has functioned well ever since. “If it weren’t for my donor, I would never have seen my daughter graduate from college and get married,” she said.
• Ms. Stanley was born with cystic fibrosis, a life-threatening disease that causes a buildup of thick mucus in the lungs. Her double-lung transplant saved her life in 2007. Those donor lungs eventually were rejected, so Ms. Stanley underwent a second double-lung transplant in 2012. “These lungs are working perfectly fine,” Ms. Stanley said.
• Ted Sulkowski vividly remembers the night he was notified that organs had become available for a liver-kidney transplant. “It was the call of a lifetime,” he said. “You never forget that moment. That night my wife and I lay in bed and prayed for the donor family.” Watch Ted's story here.
In the ceremony, patients who have received organ donations, or are waiting for a transplant, light candles from the “Candle of Life” in memory of and thanksgiving for those who have given life to others through organ donation. The lit candles represent the life that each one of us carries.
Now that Dr. Hou has her health back, she has resumed working with a free clinic in Bolivia that she co-founded. The clinic serves more than 3,000 patients a year.
“I worry whether the lung should have gone to someone younger,” said Dr. Hou, who was 68 at the time of the transplant. “So I feel a great pressure to make the most of the extra years I have been given.”
Created by Hannah Moon, an Anderson High School grad and University of Louisville freshman, the Facebook page is an appeal for a potential kidney donor for her mom, Anderson Township’s Pam Moon. Serving as her mom’s donor advocate, Hannah is using the page not only to reach out to potential donors, but also as a platform for increasing organ donor awareness.
Hannah Moon said she took the appeal to Facebook due to the success found there by similar campaigns. Facebook is a universal social media platform used by most people.
So far, response to the Facebook page has been better than Hannah Moon ever expected.
“I was contacted by people I have not talked to in a few years, by my sorority sisters I’ve known for a few months, and by people I don’t even know,” she said. “The nurses at Christ (Hospital) were so excited with the amount of people who volunteered, and I never expected to have this much support.
“I am really not surprised though, because my mom is one of the most amazing people. She is so kind and considers most of my friends her own children. She tends to put others before herself and I am so lucky to call her my mom. She has been through so much her entire life but continues to have a smile on her face and brings smiles to others.”
While many potential donors are stepping forward, many more are needed to go through the process of identifying a match. Interested donors can contact Jessica Enzweiler at Christ Hospital at 513-585-1427 or email jessica.enzweiler@thechristhospital.com
For Pam Moon, the experience is overwhelming, heartwarming and humbling – especially humbling. Medically, Moon takes everything in stride. She works hard to maintain a positive attitude. There are times, however, especially when offers of kidneys are made that staying stoic is tough.
“There are times when I’ve sat down and cried when I look at some of the messages from Hannah’s friends,” she said. Comments like, “‘We need to help this amazing woman,’” deeply touch her heart. Many of the offers to date are coming from people who simply know Pam as Mama Moon.
Moon’s courage and c’est la vie mindset regarding her health condition didn’t develop overnight. As they say, this isn’t her first rodeo. Once a donor kidney match is found, Moon will undergo her fourth kidney transplant.
The first dates back to her senior year at Anderson High School. Moon was 18 at the time and dating her now husband, Joe.
Moon said she was tired all the time and losing weight. She wasn’t hungry and was always sick. Her mom took her to the doctor where testing was done. Once the test results came back, the doctor called and Moon was immediately admitted to the hospital. She was in acute renal failure. She was diagnosed with polycystic kidney disease.
From November to June of her senior year of high school, Moon regularly went to the hospital for dialysis as she waited for a donor kidney. She remembers writing her senior year term paper with the help of dialysis technicians.
“You know, it hit so quickly that I was,” she paused. “I just don’t know. I just knew I was sick. I missed school. Weeks of school.”
Shortly after high school graduation she received her first kidney transplant. This kidney served her for two years before it too needed replaced. The donor of her second transplant was her sister, Patty Redmond. That one lasted for 20 years. The donor of her third transplant was her sister-in-law, Kathy Redmond. This was in 2001. Hannah was about 4-years-old at the time.
Her current kidney was doing well until last year – a year that Moon described as one of the toughest of her life. Her sister unexpectedly passed away. Moon had to put her mom into a nursing home for Alzheimer patients. She dealt with her own major illness resulting in hospitalization and ultimately damage to her kidney.
She knows there are still tough days ahead. Despite her seemingly dismissive approach to her kidney disease, Moon is aware she faces a significant health issue. She insists that she doesn’t take it lightly, but it’s no different than the challenges other people deal with daily, she said.
“You gotta do what you’ve gotta do. Right now, I’m OK at the numbers I’m at. Do I know how long that will last? No. Even now there are days when I’m like, ‘I don’t want to get out of bed.’ But I know everybody has days like that,” Moon said. “It makes you tired. The toxins make you tired. And it makes you not want to eat.”
Moon is well-educated about her illness, and has managed to avoid having it define her.
This is the key reason so few people are aware of her condition, friend Mickey Mills said. No doubt the Facebook page came as a shock to some who know Moon. To many, she is a dedicated and energetic volunteer in the Forest Hills School District. Her efforts included serving as a past PTA president, the chair of numerous PTA committees, a reliable volunteer, and the force behind the creation of a choral boosters group at Anderson High School.
Few, except those within her inner circle, knew of Moon’s kidney transplants, Mills said. Of those who knew, few realized that donated organs do not last forever.
“I didn’t know they don’t last forever,” she said. “I’ve been educated a lot this last year about different things that I was unaware of.”
Moon is strong, Mills said. So are her daughter and husband.
“They do things with humor and lightness, though they understand all of this. And there’s no denying anything in their family,” she said. “But they are still out there living life and having fun the best they can.”
As she prepares for the next kidney transplant, Moon lamented that this time around will be very different. This time around key support people will not be there with her. Her sister, mom and dad were there for her past procedures.
“For the first time I’m going through a transplant without them,” Moon said. A point that she recently shared with Mills who quickly pointed out, she’s not alone.
“‘I’m your family, and you know that,’” Moon said was Mills’ response to her.
“Yes she has Joe, she has Hannah who are fantastic support,” Mills said. “But still, to not feel like you have your family after also just suffering these losses. It’s hard.”
According to the National Kidney Foundation, on average: over 3,000 new patients are added to the kidney waiting list each month; 13 people die each day while waiting for a life-saving kidney transplant; and every 14 minutes someone is added to the kidney transplant list.
On her “Donate Life for Pam” Facebook page, Hannah Moon posts, “There are currently 101,189 awaiting kidney transplants. The Christ Hospital average wait time for a kidney is 5-8 years. Don’t let Pam wait that long.” [Read more]
