From PennLive.com, covering Central PA, by Carolyn Kimmel, Special to PennLive
A Mechanicsburg family struggles with rare disease requiring multiple kidney transplants
The thought of one organ transplant can be overwhelming for a family, but what about four? For the Lathrop family, that’s reality. Four of the five of them has had or will need a kidney transplant.
“It’s hard to realize that all my kids have this. It’s been hard. I won’t deny that,” said Sharon Lathrop, the only member of the Mechanicsburg family who doesn’t need a new kidney. “But it’s so much better for everyone involved to have a positive attitude.”
Her husband, Steve Lathrop, 66, has polycystic kidney disease, or PKD, a genetic condition in which clusters of cysts develop that overtake the function of the kidneys, making kidney failure inevitable. The only treatment for PKD is a kidney transplant.
The Lathrops have autosomal dominant PKD, which means there is a 50 percent chance that a parent will pass the mutation to a child. In the Lathrop family, there was 100 percent transmission – all three children have the disease. (The other form of PKD is autosomal recessive, which is rare.)
“You have thousands of filters in the lining of the epithelial cells in your kidney, which are called nephrons. Most people have a genetic shut-off to stop the lining from growing, but when you don’t, these fluid-filled cysts develop, said Sarah Lathrop.
“At a certain point, the nephrons stop filtering waste out of the blood, toxins build up and it can kill you,” said the 37-year-old Grantham resident, whose training as a physician’s assistant helped her understand the disease that affects her and her family.
Sarah Lathrop is anticipating the start of dialysis in the next six months. Dialysis is begun when kidney function is at about 10 percent; hers is functioning at 15 percent.
Her older brother, Jeff Lathrop, 41, who lives in Ohio, had a kidney transplant in July after being on dialysis for six months. A graduate of Messiah College in Mechanicsburg, Jeff received his kidney from a college buddy...
A kidney from a live donor will last 20 to 25 years whereas a cadaver kidney will last about 10 to 15 years, said Dr. Harold Yang, medical director of the transplant program at PinnacleHealth System in Harrisburg.
Recipients of live donor kidneys also usually need smaller doses of immunosuppressant medications, leading to few side effects and complications.
There’s a good chance that all the Lathrops will need two, even three, kidney transplants in their lifetimes.
“I know what’s coming down the pike; it’s called a big train,” Sarah Lathrop joked. “You have to have a sense of humor about it.”
While she takes the disease in stride, she is worried for her father. “My fear is he won’t be here . . . of 100 people who start dialysis, only 34 are alive five years later,” she said. “My dad has been such a rock star handling all this with such a positive attitude and a core of strength so that it’s not scary for us.”
Recently, she organized an event called “Dare to Donate Times 3” to collect blood, sign up kidney donors and take cheek swabs for bone marrow and stem cell registries. More than 200 people turned out and donors gave 165 pints of blood at the event, which was held at the family’s home church, West Shore Evangelical Free Church in Mechanicsburg, she said. [Read more]
From PennLive.com, covering Central PA, by Carolyn Kimmel, Special to PennLive
Process of donating a kidney doesn't have to be difficult
Sarah Lathrop thinks it’s just simple lack of education.
“I think people don’t consider donating an organ because they don’t know the need. There are 5,400 people in Pennsylvania who need a kidney right now,” said the 37-year-old Grantham resident who has polycystic kidney disease and will need a kidney transplant.
Statistics on organ need are pretty eye-opening. Here’s a sampling from the U.S. Department of Health and Human Services:
• A new person is added to the national waiting list for organs every 10 minutes.
• Each day, an average of 79 people receive organ transplants. However, an average of 18 people die each day waiting for transplants that can't take place because of the shortage of donated organs.
• Last year alone, organ donors made more than 28,000 transplants possible. Another one million people received cornea and other tissue transplants that helped them recover from trauma, bone damage, spinal injuries, burns, hearing impairment and vision loss.
Most people can be a donor
Just about anybody is a candidate to donate a kidney, according to Dr. Harold Yang, medical director of the transplant program at PinnacleHealth System in Harrisburg, where 70 to 80 kidney transplants are done annually.
Donors must be at least 18 and healthy, with no high blood pressure, diabetes or history of cancer, he said.
The process of donation begins with a comprehensive medical history to see if the candidate is a good one. The donor must speak with the living donor advocate to make sure of the reasons for the donation and awareness of risks.
Next, blood work and a physical exam must be done to measure the function of the kidney. The donor’s blood type and tissue type must be immunologically compatible, Yang said.
Donors spend two days in the hospital for recovery and can expect to be off work for three to four weeks, Yang said. During the surgery at PinnacleHealth, the transplant team works sequentially, first taking the kidney from the donor and finishing that surgery and then starting surgery on the recipient, Yang said.
Almost all the costs associated with donating a kidney are covered by the recipient’s insurance.
Sarah Lathrop confesses she is frustrated with people who won’t consider donation.
“My focus is on education, trying to get people to put their fear aside,” she said. “People say, ‘What will happen if something happens to my other kidney?’ People who donate go to the top of the waiting list if they need a kidney later. And, people don’t know it, but you can live with just 20 percent kidney function.”
PKD Fundraising
From MoultrieNews.com, Charleston, SC area
This November, Kate Williams and thousands nationwide will come together and walk in support of those affected by polycystic kidney disease (PKD). PKD is one of the most common, life-threatening genetic kidney diseases affecting thousands in America and millions worldwide. It is the fourth leading cause of kidney failure, and there is no treatment or cure.
The 2013 Charleston Walk for PKD is planned for Sunday, Nov. 10 at Fort Dorchester High School with PKD patients, their families, and friends fundraising and walking together to unite to fight and end PKD. Registration is at 11:30 a.m., with the Walk beginning at 1 p.m.
PKD causes cysts to grow on the kidneys, eventually leading to kidney failure. Parents with the disease have a 50 percent chance of passing it on to each of their children. Currently, dialysis and transplantation are the only treatment options. Approximately 10 percent of the people diagnosed with PKD have no family history of the disease, with PKD developing as a spontaneous (new) mutation. Once they have it, they have a 50 percent chance of passing it on to each of their children. Learn more at pkdcure.org.
Kate Williams and her 2-year-old son, Owen, have PKD. “Before my son, Owen, and I were diagnosed with PKD, I had never heard of the disease,” Kate said. “Participating in the Walk has been a wonderful way for us to meet others in the PKD community, and the level of support and caring has been amazing. We walk in the hope that raising awareness and research funds will lead to a cure for PKD.”
The annual Walk for PKD is the signature fundraising and public awareness event for the PKD Foundation and is the largest gathering of PKD patients, family, friends, and supporters; nearly 10,000 strong. More than 50 Walks occur every year in cities across the nation. Since 2000, the Walk for PKD has raised more than $20 million. This money helped get closer to finding treatments and a cure, and provided education to those who have nowhere else to turn. Register for the Charleston Walk for PKD at walkforpkd.org/charlestonwalk.
From PutnamSentinal.com, Putnam County/Ottawa, Ohio
A benefit is planned for Luke Kaufman, Kalida, on Saturday, Nov. 16, at the Kalida K of C Hall. Luke is 17 years old and has had two kidney transplants and is awaiting a liver transplant. He has had numerous hospital admissions this year. Family and friends of Luke's family are planning this benefit to assist with medical expenses related to multiple hospitalizations and an upcoming liver transplant.
Luke was born Feb.27,1996 and diagnosed with Auto Recessive Polycystic Kidney Disease. (ARPKD).
Luke also has Congenital Hepatic Fibrosis with Esophageal Varices, which is a liver disease that accompanies his kidney disease. On January 30, 2001, Luke received a donated kidney. The following year, Luke had his spleen removed. In addition, he has had pancreatitis, mycoplasma pneumonia, and many other unidentified infections.
On July 25, 2012, Luke received a second kidney transplant from Kendra, his non-related, living donor. On Dec.31, 2012, Luke became suddenly ill. He had septic shock with multi-system failure. He was on a ventilator, dialysis and every type of support they could do for him in ICU at Nationwide Children's Hospital.
On Feb. 12, 2012, Luke again was admitted in septic shock. This time, no source was identified. In June, it was decided that Luke needed a biliary stent placed to help drain the bile. This was done in Cincinnati Children's Hospital, where his family was told on Aug. 8 that Luke needs a liver transplant. Luke has been evaluated at both Cincinnati Children's Hospital and the Children's Hospital of Pittsburgh, and is now on both transplant lists awaiting transplant.
The benefit itself will be a fun-filled day which will begin with a 5K race set to begin at 10 a.m. (registration begins at 9am), followed by the OSU football game, a pork loin dinner from 4 to 7 p..m, music, auctions and raffles. Food and refreshments will be available throughout the day. For more information, visit www.facebook.com/Lukesbenefit.
PKD Disease
From WEAU.com, Eau Claire, WS, by Megan Lowry
When a family member gets sick many times our first instinct is to step in help, but when a family is dealing with a genetic disease many times that's not an option.
One of the most common life-threatening genetic conditions is Polycystic Kidney Disease.
"There are a lot of things in my life that are perfect but then you have this one thing that affects you and you’re in a stalemate," Silas Cole said.
For twenty-two year old Silas twice a week time is kept through an IV.
“I’ve been on dialysis for 3 months now,” said Silas.
He was diagnosed with Polycystic Kidney Disease or PKD at age15. PKD is a genetic kidney disease that affects more than 600,000 people in the U.S.
The disease causes the kidneys to form cysts. “What happens is when the cysts start growing the normal kidney tissue dies off and you start losing kidney function because of that," Dr. Ibraheem Abbas with Mayo Clinic Health System said.
Doctors say a healthy kidney is about the size of a human fist but a kidney with PKD get a larger than a football and weigh more than 38 pounds.
“It’s a lifelong disease and can have multiple complications and affect multiple generations of a family,” said Abbas.
“It affects the way your family lives and it affects the way your family thinks,” Brenda Cole said.
Brenda has battled PKD for more than a decade. She has undergone two kidney transplants and hit the five year milestone since her last transplant this year.
“I did not know how sick I was until I had the transplant it changed my life,” said Brenda.
Brenda says her health is bitter sweet though as she waits for her son to get the same lifesaving gift.
“We have two kidneys we can survive with just one, and if I had a kidney I would give it but i don't,” Brenda said.
Silas starts the kidney transplant process this month but it could be years before his turn but he says however long or short the wait.
“I’m excited to see what i can do after this,” said Brenda.
Doctors say because PKD is a genetic disease if someone in your family is diagnosed it is important to get genetic screen to see if you too are at risk.
There is a fund set up with Associated Bank Called ‘The Silas Cole Benefit Fund’ to help with Silas with medical bills.
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