From Tulsa Word, Tulsa OK, By NOUR HABIB
Leslie Acton and Tommie Acton are spending Mother's Day in the hospital.
Each is recovering from a kidney procedure.
Leslie Acton donated hers. Tommie Acton received it.
The two became family about 18 years ago, when Leslie married Tommie's son. Neither guessed that one day Leslie Acton's kidney would be a perfect match for her mother-in-law.
"To find someone that really is not blood-related at all is very unusual," Tommie Acton said. "God had a plan."
Leslie Acton agrees.
"Yup, that's what we say," she said. "This is a God thing, for sure."
The search for a donor began in October, after Tommie Acton was cleared for a transplant surgery. Tommie Acton, 62, has polycystic kidney disease — or PKD. The disease is a genetic disorder in which numerous cysts grow on the kidneys, eventually leading to kidney failure.
"My kidney is the size of a football," she said.
Tommie Acton was diagnosed with the disease years ago, in her late 20s or early 30s, she said. About eight years ago, she began dialysis and put her name on the transplant list. But a few months later, she was diagnosed with breast cancer and removed from the transplant list.
"They don't want to give you a kidney if cancer is gonna get you," she said.
After being cancer-free for five years — and after a few other delays, caused by a rare infection and two stent procedures because PKD can lead to clogged arteries — Tommie Acton was cleared for a kidney transplant in October. [Read more]
"To find someone that really is not blood-related at all is very unusual," Tommie Acton said. "God had a plan."
Leslie Acton agrees.
"Yup, that's what we say," she said. "This is a God thing, for sure."
The search for a donor began in October, after Tommie Acton was cleared for a transplant surgery. Tommie Acton, 62, has polycystic kidney disease — or PKD. The disease is a genetic disorder in which numerous cysts grow on the kidneys, eventually leading to kidney failure.
"My kidney is the size of a football," she said.
Tommie Acton was diagnosed with the disease years ago, in her late 20s or early 30s, she said. About eight years ago, she began dialysis and put her name on the transplant list. But a few months later, she was diagnosed with breast cancer and removed from the transplant list.
"They don't want to give you a kidney if cancer is gonna get you," she said.
After being cancer-free for five years — and after a few other delays, caused by a rare infection and two stent procedures because PKD can lead to clogged arteries — Tommie Acton was cleared for a kidney transplant in October. [Read more]
From The University of Connecticut, Phys.org
Three-dimensional printing has garnered coverage in the popular press for its application in the custom manufacturing of tools and mechanical parts. But six School of Engineering seniors have recently taken the application of the technology into the medical field, using 3-D printing to create body parts.
Under the direction of Anson Ma, assistant professor in the Department of Chemical and Biomolecular Engineering and the Institute of Materials Science, two three-person teams of chemical engineering students were tasked with creating an artificial kidney for their Senior Design Project using 3-D printing technology. 3-D printing is an additive manufacturing method capable of creating complex parts that are otherwise impossible or extremely difficult to produce.
The students participating were: Derek Chhiv, Meaghan Sullivan, Danny Ung, Benjamin Coscia, Guleid Awale, and Ali Rogers. They are one of the first classes of students to partner with a commercial 3-D printing company, ACT Group, to create a prototype.
The challenge the teams set out to tackle is rooted in a very real problem.
The United States Renal Data System reports that, as recently as 2009, End-Stage Renal Disease (ESRD) resulted in over 90,000 deaths. Options for treatment of renal disease are essentially limited to either an organ transplant or dialysis. However, there is a limited supply of transplantable kidneys, with demand far outstripping the supply; and dialysis is expensive and is only a temporary solution. [Read more]
Claudia Osmonovich hit some bad luck when she developed polycystic kidney disease (PKD), a heredity disorder that can lead to kidney failure.
But last month at Seattle’s Virginia Mason Medical Center, Osmonovich saw the other side of lucky when she received a kidney transplant from a living donor.
The fourth member of her family to get a kidney transplant, Osmonovich also is one of a growing number of patients getting kidneys from living rather than deceased donors.
Science has come along way since 1950 when Ruth Tucker, a 44-year-old woman with PKD became the first kidney transplant recipient in the U.S. It was an era before the development of effective anti-rejection drugs and the transplanted kidney lasted less than a year before it was rejected.
But that was long enough to have her own kidney start working better. She lived for five more years.
Four years after Tucker’s kidney transplant, doctors in Boston performed the first successful living donor kidney transplant in the U.S. between identical twins Ronald and Richard Herrick. Because they were identical twins, the donated kidney was not rejected.
At Virginia Mason Medical Center, the first kidney transplant was 42 years ago. Since then, the hospital has done roughly 2,900 kidney transplants and currently averages about 115 annually, according to Ann Rutledge, manager of the organ transplant program at Virginia Mason. Strides in the development of immunosuppressant drugs have improved outcomes.
Awaiting transplants
Roughly 122,000 people in the United States are currently awaiting organ transplants and of that number, roughly 100,000 are waiting for kidneys, Rutledge says. In Washington state, roughly 2,000 are on transplant waiting lists. Of that number, about 1,700 are waiting for a kidney.
Those figures demonstrate what Rutledge calls “the acute need we have for donor kidneys.”
The beauty of the kidney is that people are born with two of them but need only one to survive.
For healthy people, that leaves a kidney to help someone else — like Ellensburg’s Janet Campbell did when she offered a kidney for Osmonovich.
While kidneys transplanted from deceased donors save lives, kidneys from living donors have advantages, Rutledge says. Among them is a reduction in the time a patient who needs a transplant spends waiting to get one. The quality of the donor organ improves too because there’s a shorter period between the time an organ is procured and when it is transplanted.
“Once you take a kidney out of the body the kidney actually starts to decline. When you’re doing a transplant with a living donor they’re right across the hall,” Rutledge says.
Whether a transplant kidney is from a living donor or a deceased donor, transplantation adds years to life expectancy when compared to dialysis.
“We look at remaining lifetime years,” Rutledge says. For example, a person in the 60 to 64 year age range who goes on dialysis would be expected to have about 4.6 remaining lifetime years. A transplant would raise the expected remaining lifetime years to 12.6 for that same patient, she says.
Getting a match
For those facing the need for a kidney and those intent on trying to help them, the most significant change in kidney transplantation at Virginia Mason is Kidney Paired Donation, Rutledge says. The program, done through a national registry that matches donors and recipients, increases the availability of living donor kidneys by matching an incompatible donor/recipient pair to another incompatible pair. For example: Person A might want to donate to Person B but is incompatible as a donor. Matched through the registry with another donor/recipient pair, Person A may donate to Person D while Person B gets a kidney from Person C. In some cases, multiple pairs may be involved in the kidney swap as experts match living kidney donors with compatible recipients.
Besides Virginia Mason, the University of Washington, Swedish and Sacred Heart also do kidney transplants in the Seattle area. Pediatric transplants are done at Children’s Hospital.
For information on becoming a living donor, call Virginia Mason’s Living Donor line, 206-341-1201. For information on kidney and other organ transplantation, go to the United Network for Organ Sharing at UNOS.org.
Last spring WBOC shared with you the story of a Milford woman in desperate need of a kidney transplant.
Nadine Holleger had polycystic kidney disease. It's a life-threatening, genetic disorder.
Holleger had a willing donor, Leia Dypsky. But Dypsky was not a match.
Holleger's blood type was making finding a match very hard. Still Holleger did end up getting a kidney this past June. It was process called "paired exchanged" that saved her life.
On April 27 Holleger was in Washington, D.C., looking for a needle in a haystack. There were 15,000 runners participating in the Nike Women's Half-Marathon, and she was looking for just one.
"It's still a bit hard for us to recognize her, because we only met her once," she said.
Holleger met Jennifer Raczka that one time only the day before the race. But since June, despite not having met, they've shared a connection - specifically that Holleger now has Raczka's kidney in her. That happened through paired exchange.
"They will put your information in the computer," Holleger explained. "The computer finds the best match for you from a group of people who have already been entered."
In other words, a donor-recipient pair ends up swapping with total strangers. And in this case, the computer found three pairings that together could exchange successfully.
Holleger had her willing, but non-matching, donor - Dypsky. Raczka was donating for her mother, Gail Kneebone. And the computer also pulled in donor don Hyneck and his sister-in-law, the recipient, "Beth."
Dypsky's kidney went to "Beth" in san francisco. Hyneck's went to kneebone in san diego. And Raczka's came to Holleger in Delaware.
"It's a round robin of organs going around the country," said Hyneck.
"We saved three lives," Dypsky said.
At the time of the donations, donors didn't know whose organs they were getting, and recipients didn't know where their organs were going.
"I was focused on my mom," Raczka said. "In the back of my mind, I thought, 'I hope mine is going somewhere good. I wanted it to have a good home.'
But there was no guarantee Raczka would ever learn where that home was. Paired exchanges donors and recipients don't necessarily learn each other's identities.
"We are given the opportunity after the donation takes place to send a confidential letter to the donor," said Holleger. "If they choose to respond, they can."
And Raczka did. [Read more]
PKD Issues
From PR Urgent, a Press Release
Putting fluid into the peritoneal cavity for peritoneal dialysis leads to an increase in intra-abdominal pressure. This can lead to complications such as hernias and leaks of dialysis fluid.
When undergoing peritoneal dialysis (PD), patients whose cause of kidney failure is polycystic kidney disease (PKD) may be at risk for complications due to enlarged kidneys or liver reducing the volume capacity of the peritoneal cavity. One of these complications is hernias.
"Hernias can be painful," said Shiona Mackenzie-Morrison, Hamilton Chapter Coordinator for the PKD Foundation of Canada. "It is a good thing that abdominal hernias can be repaired, but many patients are concerned about undergoing continuous peritoneal dialysis if they have experienced a hernia. In her talk at St. Joseph's Healthcare Hamilton on May 25, Dr. Bargman will explain why hernias should not prevent people from doing PD."
Joanne Bargman MD, FRCPC, is an award winning staff Nephrologist at the University Health Network (UHN) and Professor of Medicine at the University of Toronto. Dr. Bargman says that, despite the increased risk of hernias in polycystic kidney disease patients, they can do very well on PD.
"This home dialysis method allows the patient greater control over their therapy, and obviates the need to travel to an in-centre dialysis unit several times a week," Dr. Bargman said. "Except in the patients with massively enlarged kidneys, PD is a viable method of renal replacement therapy with a good outcome in PKD patients." [Read more]
PKD, Real Stories
From Worchester News, UK
AN ATHLETIC dad from Worcestershire has strapped on his running shoes to raise cash for the clinic which cared for both his young daughters in their first few weeks of life.
Graham Edwards ran the Worcester marathon on Sunday, May 4 in the latest in a very long line of fundraising efforts for the children’s clinic at Worcestershire Royal Hospital.
Mr Edwards and his wife Em are frequent visitors to the clinic as both their young daughters, nine-month-old Mabel and two-year-old Amelia, suffer from Pyruvate Kinase Deficiency (PKD).
The girls are among only about 12 people in the Midlands who suffer from the blood disorder, which means they need constant monitoring and will need blood transfusions for the rest of their lives.
Last year the family from Fernhill Heath near Worcester raised £1,600 to thank the clinic for the care Amelia received when she was just five weeks old.
Mr Edwards said: “Our eldest little girl had a rough start in life, spending a stressful four days in intensive care just 12 hours after coming into this world.
“Unsure what caused her severe jaundice and low blood count she underwent a series of blood tests.
“Now our latest addition to the family, Mabel Lily, has PKD and she too is a little fighter.
“At all times the staff in the children’s clinic have been so reassuring and helpful to us.
“They have really helped us through a lot of traumatic times.”
As well as taking on the marathon earlier this month, Mr Edwards and some of his colleagues from Adecco Recruitment in St Nicholas Street, Worcester, are planning on cycling the five mountain stages of the Tour de France in the Pyrenees as well as an Ironman even later in the year.
Senior staff nurse at the children’s clinic Charlotte Hughes said she and her colleagues were extremely grateful to the Edwards family for all their fundraising work. [Read more]
After having lost almost everything in the last two years, the Giunta family is desperate to save their Wasaga Beach home.
Paul Giunta, an independent transport truck driver, was the sole breadwinner for the family until May 2012 when he was diagnosed with polycystic kidney disease.
His wife Brigitte said that is when their world fell apart.
Before his diagnosis Paul found that he was getting tired during the long hauls that used to be no problem at all. He would have to pull over and rest along the way. He was also gagging, which turned out to be a symptom of the disease.
He saw a doctor and was diagnosed with Stage 5 (most advanced) kidney disease and he was sent for dialysis treatments right away, which he continues to undergo three times per week for four hours each session.
Paul experiences side effects from the treatment and medication including insomnia, mood swings and depression. He feels tired and unwell, has to be on a special diet and can’t lift anything heavy. He said he would have to retrain to find another job but his health is too poor.
Brigitte, who has been a stay-at-home-mom, is now Paul’s caregiver. She said they would do anything to get off of disability but they have no options.
With no income and not being able to return to work, Paul, 57, was forced to sell his transport truck, but at a loss.
The sale didn’t cover the business debt, let alone their personal debt that was adding up.
Paul did qualify for disability but with creditors calling and no way to make payments, the Giuntas are afraid they will lose their home of 22 years, where they have raised their four children, one of whom still lives at home. [Read more]
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