Sunday, June 26, 2016

Living with PKD: Cyclist in Evanston, Toddler in New Jersey, Jumper in Potomac Falls

Living with PKD

From Chicago Tribune, by Dan Shalin Pioneer Press

David Simmons gets back to active lifestyle after kidney transplant

David Simmons, Maureen McGrath

David Simmons and his wife Maureen McGrath, his kidney donor, pose for a photo at the 2012 Transplant Games of America in Grand Rapids, Mich. (Simmons family / HANDOUT)

Like many people who have gone through a major medical procedure, Evanston resident David Simmons' recovery from a 2003 kidney transplant included a series of milestones. Among them were getting out of the hospital, becoming pain free and getting back to work.

For the then-49-year-old Simmons, who received the kidney from his wife Maureen McGrath, one of the most significant moments arrived when he was able to resume his active lifestyle, which he said took six to eight months.

Simmons, whose health issues stemmed from polycystic kidney disease, had been a long-distance bike rider, participating in events in which he rode 200 miles in a day. He even cycled across the country in the late 1980s.

"Absolutely (getting active again) was a milestone," said Simmons, who did have a few rejection episodes during his recovery. "One of the things that was so important to me was if I would be able to pursue my active lifestyle, which included cycling and skiing at that time. I wanted to be able to continue doing what I did before."

Thirteen years later, Simmons said he continues to ride four or five days a week, often with a group along Sheridan Road. During a big week, he can do up to 300 miles.

Since 2005, Simmons also has been a regular competitor in the World Transplant Summer Games and the Donate Life Transplant Games of America, both biennial Olympic-style gatherings of transplant recipients competing in numerous age-group events. The World Games date back to 1978, while the U.S. Games began in 1990.

Simmons has competed in cycling, and formerly swimming, at the World Games in London, Ontario, Canada (2005), Gold Coast, Australia (2009) and Durban, South Africa (2013) and been a participant in five U.S. Games, including earlier this month (Friday, June 10, to Wednesday, June 15) in Cleveland.

In Ohio, as one of 53 athletes on Team Illinois, Simmons earned silver medals in two age-group cycling events, the 5K Time Trial and 20K Road Race. Simmons, 62, now has won six medals, all at the U.S. Games: one gold, three silver and two bronze.

"There are 52-year-olds who are not as active as David. He doesn't look his age and I know how passionate and how competitive he is about cycling," said JP Marzano, the Team Illinois captain and a three-time kidney transplant recipient.

But the Transplant Games are about so much more than competing and earning medals. The U.S. Games are billed as a celebration of the lifesaving gifts of transplantation. Participation in the games was open to not just donor recipients, but living donors. Promoting organ donation awareness also is an important goal of the event. [Read more]




From Huffington Post

Toddler Who Looked Eight Months’ Pregnant Because Of Rare Disease Saved By Kidney Donor Dad


Maddy’s large stomach before her transplant



Paul Rybkin, Karen Rodas and their three children since the transplant.

A toddler who looked eight months’ pregnant because of a rare disease has been saved thanks to her dad, who donated his kidney.

Maddy Rybkin, now two, was born with a condition called Polycystic Kidney Disease (PKD), which meant cysts grew on her kidneys causing her stomach to look enlarged.

Although Maddy’s condition was managed early on, when she reached 18 months old her parents, Paul Rybkin, 38, and Karen Rodas, 38, were told she urgently needed a kidney transplant.

Luckily, her dad was identified as a donor and, following a life-saving operation in January 2016, she has recovered well.

“Any father would have done what I did, donating my kidney to Maddy,” Rybkin said. “It’s part of being a parent.

“Now we are on a high and can watch Maddy grow up as a happy and healthy little girl.”

Maddy’s parents, from New Jersey in the US, are both carriers of the recessive gene for PKD - a genetic condition that leads to the deterioration of kidney and liver function.

The couple found out they carried the recessive gene when Rodas, who is also mum to Jackson, nine, from a previous relationship, and one-year-old Penelope with Rybkin, - fell pregnant with their first child together, Nathaniel.

Rodas carried Nathaniel until full-term, but he died after just 36 hours.

“During my pregnancy with Nathaniel, we discovered we both carried the recessive gene PKD, meaning the chances of any of our babies surviving, if they were born with it, was very low,” Rodas said.

“He didn’t stand a chance. Just 36 hours after his first cry brought him to life on 4 August 2012, he was gone.”

Medics warned the couple if they tried for another baby, he or she would have a 25% chance of carrying the condition, too.

But Rodas and Rybkin didn’t want to let go of their dream of having a big family.

“When I fell pregnant again, we were both over the moon,” Rodas explained.

“Then, at our 20-week scan, doctors found Maddy’s kidneys were enlarged - a sure-sign of PKD, just like Nathaniel. My heart sank.

“I was determined we didn’t lose our baby to the deadly disease again.” [Read more]





From Loudoun Times-Mirror, Virginia by Alison Cuevas

For Potomac Falls woman, a brave jump


Potomac Station resident Courtney Prosser Alexander rappelled off the Hyatt Regency in Baltimore last year. She will make the same jump again today. Courtesy Photo

Jumping off of a 15-story ledge is scary, but is it scarier than finding out you have a chronic kidney disease?

On Saturday, the National Kidney Foundation of Maryland will host its 7th Annual Rappel for Kidney Health event. Participants will jump off of a 15-story ledge at the Hyatt Regency in Baltimore to raise funds and awareness about the effects of kidney issues.

According to the National Kidney Foundation of Maryland, more than 26 million Americans have chronic kidney diseases, making it the ninth leading cause of death in the United States. Most people don't know they're at risk for kidney disease until the condition has progressed.

This was the case for Potomac Station resident Courtney Prosser Alexander, who has a strong family history of Polycystic Kidney Disease with her mother, uncle and sister all being diagnosed.

In her mid-20s, Alexander went to her doctor’s office to find out if she was a match to donate a kidney to her mother. Instead, Alexander discovered cysts covering both of her own kidneys.

“I was definitely shocked when I was diagnosed but watching my sister and mother battle the disease was comforting because they had gone through a lot and were resilient,” Alexander said.

Alexander’s older sister went through an unusual double kidney and liver transplant because of PKD which transformed her life for the better. Their mother, unfortunately, died on dialysis seven years ago, as she was ready to be put on the donor list.

“Once you get a transplant, the disease is cured,” Alexander said. “There is an end in sight but it’s a matter of how long that will take.”

The National Kidney Foundation of Maryland has raised $26,039 so far in its rappelling event this year and has a goal of $140,000. Alexander’s team of four has a goal of $4,000 and has raised $1,300 so far. The organization will use these funds for research, awareness and support for the patients and families affected by kidney disease.

Alexander recalls her time last year waiting on the edge of the Hyatt in Baltimore in the scorching sun as more than nerve-wracking.

“The hardest part is stepping over the edge and trusting that you’ll be OK,” Alexander said, who will rappel again this year. “It’s an opportunity to do something fun to raise awareness and also to show my children that there is nothing to be afraid of.” [Read more]

Sunday, June 19, 2016

PKD Life: North Andover, Kenya, Iceland; Donate to PKD in lieu of Wedding Gifts; Insurers to Cover Kidney Donor Travel Costs

Living with PKD

From Eagle-Tribune, North Andover, MA, By Zoe Mathews

Kiki's search for a kidney

Kiki's search for a kidney

METHUEN – A sign, low to the ground and only visible driving east on Route 97 from Salem to Haverhill, reads "KIDNEY WANTED – TYPE O POS – INQUIRE WITHIN."

It popped up almost two weeks ago, when RuthEllen "Kiki" Bernard was out of town. Her husband, Wayne Bernard, called her to tell her he was putting a sign up out front of Common Grounds Cafe, the family business.

"I wanted to pique people's interest, sort of half out of humor and half seriously," he said.

Kiki Bernard has a genetic kidney disease called polycystic kidney disease that causes cysts in her kidneys to swell until they eventually shut down the organ's ability to function. More than 600,000 people in the country have the disease, which is the fourth leading cause of kidney failure according to the National Kidney Foundation.

Within the past year, Kiki's kidneys have taken a turn for the worse.

"I found out six months ago that my kidneys are functioning at 20 percent," she said.

The sign is the couple's way of asking for help. Without a transplant, Kiki Bernard faces dialysis treatment or kidney failure and further health complications due to the disease.

"I have a hard time asking for sugar," she said. "This is a whole other level."

The couple are no strangers to the trials and emotional traumas of sickness. Both their prior spouses died of cancer. They began dating eight years ago, got married last summer, and now live in Haverhill. Kiki Bernard is a retired school teacher in Rochester, New Hampshire, and Wayne Bernard runs the cafe that has been in his family since 1939.

Polycystic kidney disease is hereditary. Kiki's mother and sister both had it, and her daughter is living with it. There is no cure.

Kiki found out she had the disease when her mother was diagnosed, about 30 years ago. When doctors said her kidney function was declining at a more rapid rate half a year ago, she began the process of getting on the transplant list. She has been working with doctors from Tufts Medical Center in Boston.

"A year or two is what she's got with these kidneys," Wayne said. According to her doctor's prognosis, at some point in the near future she will have to go on dialysis.

The average waiting time for a kidney transplant is anywhere from three to five years, but Kiki said she won't be matched as quickly as others because she has Type O blood. That blood type is the universal donor, but people with Type O blood can only receive organs from other people with Type O blood.

"The cadaver list is six to eight years for an O," said Wayne, referring to the deceased donor list.

The couple put the sign out front of Common Grounds in the hope they might find a living donor – it is possible to live with one kidney, and there are benefits for a recipient accepting a kidney from a living donor.

According to the National Kidney Foundation, a kidney from a living donor usually functions immediately, because the kidney is out of the body for a very short time. Some deceased donor kidneys do not function immediately, and as a result, the patient may have to go on dialysis anyway until the kidney starts to function. [Read more]



From Times Live, Zaire, by POPPY LOUW

Schoolgirl app saving lives

A group of Kenyan high school- girls have revolutionised kidney donation by creating a donor app.


The app, developed with the help of their teacher, is a doctor-donor-recipient portal that shortens the time that patients must wait for organs and is especially useful in a country that does not have a formalised donor system.
Now in its pilot phase, the app is being tested by Kenyan hospitals.
Although South Africa already has a similar system in place, a patient on the kidney transplant waiting list is keen for the innovative app to arrive here.
It has been 26 years since Casper Walkers, 66, was diagnosed with polycystic kidney disease - a disorder he inherited from his father.
Patients with this disease develop clusters of cysts (non-cancerous sacs containing water-like fluid) within their kidneys.
Walkers, an Organ Donor Foundation volunteer from Centurion, near Pretoria, said the app could, in conjunction with the current system, assist patients to find donors.
"Many people aren't aware of the difference they could make if they became an organ donor.
"Some patients die after waiting for years for a transplant," he said.
Walker is one of about 1,400 South Africans, adults and children, waiting for a kidney transplant.
According to Organ Donor Foundation statistics, a patient waiting for a kidney transplant who does not have a family member or friend who can donate a compatible kidney can wait for up to eight years for a transplant.
Foundation executive director Samantha Nicholls said South Africa was in "desperate need" of more organs. She said the lack of understanding and education about organ donating was the foundation's biggest problem.
She encouraged those who have signed up, or want to, to tell their family immediately.
"In South Africa, even if you have indicated your wish to be an organ donor by signing up with our foundation, the family will, nevertheless, be asked for consent at the time of death," said Nicholls.
An estimated 81 kidney transplants were performed in 2014 and a further 3,000 patients are waiting for organs such as hearts, lungs, pancreases and livers.
There are almost 200,000 donors on the foundation's database. More than 43,000 signed up last year.



From Penarth Times, United Kingdom, by Dominic Jones

Icelandic adventurer completes 250 mile charity run in support of colleague

A WOMAN from Dinas Powys took part in a 250 mile charity run across Iceland in support of the charity who helped her colleague as he underwent a life-saving kidney transplant.

Charlotte Bloxham, 22, raised £1800 for Kidney Wales through the Icelandic adventure, and is now planning on taking on the Cardiff 10k for the same charity later this year.

Miss Bloxham found out her co-worker Laurence Weekley was suffering with polycystic kidney disease - an inherited illness - when she began working at the Cardiff based Covert Investigations and Surveillance Ltd.

In November 2015, after managing the disease for a number of years, Mr Weekly was told that he would need dialysis treatment at home three to four times each day, while the search for an organ donor began.

Seeing his struggle, Miss Bloxham decided to take on a 250 mile run across the extreme volcanic landscape of Iceland, to raise funds for the Kidney Wales Foundation - the charity that would support her colleague through his illness.

In April Miss Bloxham and a group of friends set off to Jokulsarlon to begin the trek that would see them race across the south coast of Iceland, rising at 8am and run until 7.30pm every day for four days.

On the fourth day she received the news that a donor had been found for Mr Weekly and he was due to receive a transplant in the morning.

His operation was a success and doctors are confident that he no longer requires dialysis treatment.

Fresh from the success of her Icelandic adventure, Miss Bloxham is pulling on her trainers once again and participating in this year’s Cardiff 10k road race, where she will be fundraising for Kidney Wales running alongside Mr Weekly’s son, Jac - who has yet to discover if he will suffer from the same disease that as afflicted both his father and grandfather.

“I can’t wait to race in my very first Cardiff 10K this September," she said. "Getting the message that Laurence was on his way for a transplant as we reached our last day of the challenge in Iceland was incredible. It made all the pain worthwhile and spurred me on to reach the finish line.

“Seeing Laurence go through so much at the same age as my dad was heart-breaking, and I wanted to do everything I could to help him. I can’t wait to race again later this year and raise even more money for Kidney Wales.”

Roy Thomas, Chief Executive of Kidney Wales said: “I applaud Charlotte and her group for the challenge they took on in Iceland and here at Kidney Wales we are truly grateful for the support they have given us."

Registration for the 2016 Cardiff 10k event is now open. To find out more about the event visit www.cardiff10K.cymru or call 02920 343951.




From Fundly.com

PKD

From Sereda Mills

In lieu of wedding gifts we would like to rise money for the PKD foundation. Polycystic Kidney Disease.




From ABC News, By TOM MURPHY, AP HEALTH WRITER

Travel costs that could dissuade potential kidney donors from volunteering for life-saving transplants will be reimbursed by the nation's biggest insurer starting next year in a move designed to encourage more donations.

UnitedHealth Group says that it will pay back up to $5,000, not counting lost wages from missed work, becoming the latest insurer to reimburse people who donate for an organ transplant.

Insurers cover the medical expenses for someone who donates an organ, but many plans do not pay the cost of getting to the surgery site, staying near it while recovering and making medical appointments tied to the donation. Some states offer tax breaks for these costs.

People who travel to donate a kidney can miss at least two weeks of work and spend $5,000 or more, according to Harvey Mysel, president of the nonprofit Living Kidney Donors Network. He says these costs can discourage people from becoming donors.

"It is a challenge for many people," he said.

It is illegal to pay someone to donate an organ, but other insurers like Aetna, Cigna and the Blue Cross-Blue Shield carrier Anthem also cover some of the expenses a donor incurs.

Starting in January, UnitedHealth will reimburse lodging and travel expenses beginning with a doctor's initial evaluation and continuing for up to two years after the donor surgery. UnitedHealth will limit this initially to its fully insured coverage, which typically entails individual plans and coverage offered through small employers.

But company officials say they may expand the reimbursement if it proves successful.

The insurer covered 75 transplants from living donors last year through its fully insured coverage, according to Dr. Jon Friedman, an executive with UnitedHealth's Optum subsidiary. He couldn't say how many cases involved travel. He said UnitedHealth decided to reimburse for the additional expenses in order to spark more interest in live organ donation. [Read more]




  • Sunday, June 12, 2016

    PKD in Kids, Diagnosing PKD, PKD: Kidney Search Starts Over; Gift of Life: Santa Clarita, Milwaukee

    Living with PKD

    From BMJ (British Medical Journal), United Kingdom

    Autosomal dominant polycystic kidney disease in children

    Article authors:
    Satyamaanasa Polubothu, academic clinical fellow1,
    Amanda Richardson, paediatric nephrology specialist trainee2,
    Larissa Kerecuk, consultant paediatric nephrologist3,
    Manish Sinha, consultant paediatric nephrologist2

    Screen now to save later?

    Autosomal dominant polycystic kidney disease (ADPKD) was previously known as “adult PKD” because most cases come to medical attention during adulthood. However, clinically important morbidity such as hypertension and cardiovascular disease occurs much earlier. Screening children could detect those affected, and randomised controlled trials show that early intervention reduces disease progression. Despite this, very few children from families with the condition are currently assessed in the United Kingdom.

    ADPKD is the most common inherited kidney disease and accounts for 10% of people under 65 years on renal replacement therapy in the UK.1 Often asymptomatic during the first three decades of life, the condition typically presents with abdominal pain or an incidental finding of hypertension. Renal disease is characterised by gradual bilateral cystic dilation of the renal tubules, with eventual compression of normal renal parenchyma and kidney enlargement. After patients develop hypertension, the disease has an accelerated trajectory, with a … [Read more]




    From News-Medical, By Sally Robertson, BSc

    Diagnosing Kidney Cysts

    Kidney (renal) cysts are fluid-filled sacs that form on one or both of the kidneys. Usually, these cysts do not cause symptoms or kidney damage, in which case they are referred to as simple kidney cysts.

    Simple kidney cysts are very different from the type of cysts that develop when a person has the genetic condition polycystic kidney disease (PKD), which causes scarring of the kidney tissue that can eventually damage the kidney and lead to kidney failure.

    Simple cysts sometimes cause symptoms if they have become large enough or have started to press on other organs. They can also become infected, leading to pain and fever.

    Diagnosing Simple Kidney Cysts

    Since these cysts do not generally cause symptoms, they are usually only discovered when a test or scan is performed for some other condition. When a cyst is found, imaging tests are performed to determine whether it is a simple cyst or a sign of a more serious condition. The imaging tests that may be employed are described below.

    Ultrasound

    Ultrasound employs a device called a transducer to bounce sound waves off organs and generate an image of their structure. Images of the whole urinary tract can be created and used to distinguish between cysts that are harmless and those that signal more serious conditions.

    Computerized tomography

    In a computerized tomography (CT) scan, a combination of X-rays and computer technology is used to generate 3D images. This may involve a dye being injected, which is referred to as a contrast medium. For these scans, patients are required to lie down on a table, which is moved into a device shaped like a tunnel where the X-rays are obtained. These scans can reveal tumors and cysts present in the kidneys.

    Magnetic resonance imaging

    Magnetic resonance imaging (MRI) scans use magnets and radiation to create very detailed images of soft tissue and organs. This process may also involve the use of a contrast medium. Here again, a person lies on a table that is moved into a tunnel-like machine. These scans also reveal the presence of any cysts or tumors.

    Diagnosing PKD

    PKD is usually diagnosed using ultrasound, which is the most non-invasive and cost-effective way of diagnosing the condition. If a person is at risk of PKD, but is aged older than 40 years and has an ultrasound scan that shows the kidneys are normal, then they are unlikely to have PKD. Occasionally, a CT scan or MRI scan may be used to find cysts that are too small to be detected by ultrasound. When cysts are found, MRI is the technique used to monitor the growth and volume of both the kidneys and the cysts.

    Sometimes, genetic testing is performed, which involves a sample of blood being taken and checked for gene mutations known to cause PKD. This is not always recommended because it is expensive and not always reliable. Genetic testing fails to detect PKD in around 15% of patients who undergo the test. Situations where genetic testing may be recommended include the following:
    Where there is uncertainty in diagnosis after imaging techniques have been used
    Where a person is younger than 30 years of age and has a family history of PKD, a negative ultrasound, and intends to have a children
    Where a person with a family history of the condition wishes to donate a kidney

    Reviewed by Susha Cheriyedath, MSc

    Sources
    https://www.kidney.org/atoz/content/polycystic
    http://www.niddk.nih.gov/health-information/health-topics/kidney-disease/polycystic-kidney-disease-pkd/Pages/facts.aspx
    http://pkdcharity.org.uk/
    https://www.kidney.org/atoz/content/simple-kidney-cysts
    Further Reading
    Kidney Cyst Removal




    From Boston Globe, By Eric Moskowitz, Globe Staff

    Cambridge educator must start search for kidney anew

    Cambridge, Massachusetts -- 1/19/2016- Parent Julia Kanno (R) hopes to be able to donate a kidney to after-school program director Christine Tierney the two pose for a portrait at Cambridgeport School in Cambridge, Massachusetts January 19, 2016. Jessica Rinaldi/Globe Staff Topic: 21kidney Reporter:

    Christine Tierney has to restart her search for a kidney donor after a parent who appeared to be a potential match was ruled out because of hypertension.


    A popular Cambridge educator with a life-threatening kidney disease needs a new donor, after a parent who appeared to be a potential match has been ruled out because of previously undiscovered hypertension.

    Christine Tierney, who runs an after-school program celebrated for its arts and enrichment offerings as well as its free-wheeling sense of fun, was diagnosed eight years ago with polycystic kidney disease. The inherited condition causes ever-larger clusters of cysts to form inside the kidneys, eventually overwhelming them and causing them to fail. [Read more]




    Gift of Life

    From KHTS, AM 1220, Santa Clarita, CA, Posted by: Kimberly Beers

    Santa Clarita Man Getting Second Chance Thanks To Organ Donation

    James Zimmerman, a long time Santa Clarita resident with polycystic kidney disease, thought he had run out of options and prepared himself and his family for his life on dialysis until a friend decided to give him a second chance at life by donating one of her kidneys.

    Debi Rodriguez and James Zimmerman.


    James Zimmerman, a long time Santa Clarita resident with polycystic kidney disease, thought he had run out of options and prepared himself and his family for his life on dialysis until a friend decided to give him a second chance at life by donating one of her kidneys.

    Hometownstation.com ran a story about James, his disease, and his immediate need for a kidney in February.

    “We were hoping to get a donor to keep him off of dialysis,” said Vicci Zimmerman, James’ wife. “Your chances of not rejecting a kidney, of not having complications, and doing better with immunosuppressant drugs post surgery are greatly improved if you don’t go onto dialysis first.”

    Polycystic kidney disease, or PKD, affects about 600,000 people in the United States today. PKD produces large cysts on the kidneys that are filled with toxic fluid and make it impossible for the kidneys to drain and remove the excess. An average adult kidney is about the size of a clenched fist, but Zimmerman’s kidneys are much larger, estimated to weigh about 22 pounds each.

    “His kidneys are unable to process out the toxins from his blood,” Vicci Zimmerman said. “His quality of life at this point is not very good.”

    James was diagnosed when he was 20 years old, and he lived with the disease for over 30 years, not needing a kidney transplant until now due to his healthy lifestyle.

    Gerry Rodriguez, a friend of the Zimmermans for years, was on hometownstation.com searching for information about a tragic incident that happened by his home in Canyon Country and stumbled upon a story about James’ need for a kidney. Gerry showed his wife Debi, who immediately decided to give James one of hers.

    When asked if he was surprised about his wife’s instantaneous decision to undergo surgery, Gerry said it’s just who his wife is.

    “Knowing her, it didn’t surprise me,” said Gerry.

    Gerry and Debi said they’ve raised their children to be selfless, and this was evident when their daughter Olivia was “ready to step in” if Debi wasn’t approved to donate her kidney.

    “The way we’ve raised our kids, they’ve always had that spirit of giving,” said Gerry. [Read more]




    From Milwaukee Journal-Sentinel, by Jim Stingl

    Acquaintance donates kidney, solves family dilemma

    Paul Bentley meets with Cassie Peterson-Huber in the Preoperative Clinic at Froedtert Hospital. Bentley found a kidney donor in Peterson-Huber, a family acquaintance.

    Paul Bentley meets with Cassie Peterson-Huber in the Preoperative Clinic at Froedtert Hospital. Bentley found a kidney donor in Peterson-Huber, a family acquaintance. Credit: Gary Porter



    Cassie Peterson-Huber saw my column in March about Paul Bentley needing a kidney, so she gave him one of hers.

    You don't expect to get a kidney from one of the Brewers' racing sausages, but more on that in a minute.

    Donor and recipient are both recovering nicely from the transplant last week at Froedtert Hospital.

    "From what I heard, I had a really great kidney, and it's working just as it's supposed to in the new body," Cassie said.

    "It functioned immediately," Paul said.

    The surgery was routine, if we can ever call opening people up and swapping parts routine. But the story of Paul and his family is not.

    The Oostburg man's polycystic kidney disease, diagnosed when he was in his 40s, was passed genetically to two of his four sons. The hope is that the sons without the disease each will someday donate a healthy kidney to a brother when he needs one. Meanwhile, Paul's wife, Judy, gave him one of her kidneys nine years ago.

    Unfortunately, that kidney failed. Then the sons wondered if one of them would need to donate to their 70-year-old father instead.

    Judy led an all-out effort to find a live donor, and that resulted in a dozen people coming forward to be screened, including 29-year-old Cassie.

    She is not a stranger to Paul and his family. She competed with the two youngest sons, Nate and Mike, in Shorewood swim club starting in about the seventh grade. In more recent years, they were friends mostly on social media.

    "I used to time her at swim meets," Paul said, never dreaming that this child would someday provide him with a lifesaving kidney.

    Cassie was troubled when she read of the difficult decision faced by Paul's sons.

    "So I thought, you know what, let me at least try. If I'm not a match, then I'm not a match. I knew we both had the same blood type, so I thought there would be a really good chance," she said.

    Cassie, who lives in Walker's Point, discussed it with her fiancé, Juan Antonio Rodriguez. They plan to marry on Oct. 14 in Milwaukee. That's right, she jumped into the process of donating a kidney while planning a wedding.

    She and Juan met working together at Miller Park on the Brewers crew that creates fan experiences, and they continue in that job. Both have donned the costumes and run their share of sausage races, Cassie usually as the bratwurst in hot pink shoes. [Read more]

    Sunday, June 5, 2016

    Wearable Artifical Kidney Clinical Trial results, Living with PKD: Tennessee; Dialysis: Building Better Blood Vessels

    PKD Research

    From NDTV, India

    Wearable Artificial Kidney May Replace Dialysis, Shows New Clinical Trial

    Wearable Artificial Kidney May Replace Dialysis, Shows New Clinical Trial

    A wearable artificial kidney may be a viable dialysis technology that can give people with end-stage kidney disease the freedom to move around during treatment, according to the results of a new clinical trial.

    The technology may become an alternative to conventional hemodialysis for people with end-stage kidney disease.

    Present-day treatment generally requires three sessions a week on a stationary machine that restricts patients' ability to walk around while it is attached and running.

    In contrast, a wearable device would allow patients to be mobile and untethered. It could also provide additional treatment benefits from longer sessions or more frequent days of dialysis.

    The clinical trial of a prototype for such a device was performed with seven patients at University of Washington Medical Centre in the US last year. The patients were treated with the device for up to 24 hours.

    The US Food and Drug Administration-authorised trial was conducted to determine the safety and efficacy of the device - its ability to take over some functions of failed kidneys.

    The researchers also wanted to ask the participants about their impressions of the experimental treatment, and to compare those with standard dialysis treatment.

    The device was shown to effectively clear the blood of waste products, like urea, creatinine and phosphorus, while also removing excess water and salt. These are normally filtered out and removed by working kidneys.

    The usual diet for patients on standard dialysis is highly limited. In contrast, on the wearable artificial kidney, the patients' blood electrolytes - like sodium and potassium - and their blood fluid volume remained balanced during the test, even without any diet restrictions.

    Regulating the volume and composition of body fluids is another job of normal kidneys.

    During the trial, the participants tolerated the treatment well and did not have any serious, adverse effects.

    The circulatory system, which keeps blood moving throughout the body, stayed stable in all the patients.

    However, the trial was stopped after the seventh patient because of technical problems with the device. These included the excessive formation of carbon dioxide gas bubbles in the dialysis solution, and intermittent variations in solution and blood flow.

    These technical complications will need to be addressed through device redesign and refinement to enhance safety and reliability prior to any further, long-term studies of the wearable artificial kidney, researchers said.

    The findings provide proof of concept that a wearable device along these lines could be developed as a viable, novel dialysis technology, they said.

    The patients participating in the study reported greater satisfaction during their treatment with the wearable artificial kidney when compared to their ratings of care during conventional dialysis centre treatment.

    The findings were published in the journal JCI Insights.




    Living with PKD

    From The Wilson Post, Gallatin, Tennessee, by SABRINA GARRETT

    Woman of Wilson: CarryAnn Misamore


    CarryAnn Misamore, of Mt. Juliet, discovered her calling at a young age.

    Misamore, who grew up in the Pacific Northwest, remembers gathering wild lilies to bring her mother as a girl. "Then as I grew older, I used to watch a show called "Three's Company" and thought how fun it would be to be Janet, one of the characters, because she worked at a flower shop," she recounted.

    Misamore carried the dream for years - until 2005. With the support of her husband, Steve, she quit her corporate job and started her own flower shop. Fresh by CarryAnn, now located in Mt. Juliet, was born.

    One of the most rewarding aspects of her job as a floral designer is helping brides get ready for their big day.

    "After I have met with a bride (and) we gushed over all the details of her imagined wedding day, a few months later I get to hand her the bouquet. It is so personal, and at that moment I think for a bride it all becomes real," she said. "They often get emotional, and I love it."

    Regardless of if the creation is for a wedding, charitable event or "just because" - Misamore loves making people smile.

    "No one ever sees flowers and frowns. Flowers always bring joy even on a day of loss, they soften the sorrow and fill the sad space," she said.

    Misamore herself has had some sad space - being diagnosed with Polycystic Kidney Disease.

    "Just saying it out loud was a challenge at one time because I just didn't want anyone to know. It is characterized as a terminal illness because there is no cure," she explained. "PKD causes numerous cysts to grow in the kidneys. These cysts are filled with fluid. If too many cysts grow or if they get too big, the kidneys can become damaged."

    About 50 percent of people with PKD have kidney failure by age 60.

    In September 2015, Misamore's kidneys had grown so large they had reduced the function to the point that dialysis was needed.

    "I made a video (on vimeo.com) asking for a donor," she said. "Vanderbilt received blood kits from people all over the country that wanted to be my donor."

    There were more than 50 matches.

    "This was overwhelming to me and to Vanderbilt. They had never had such a large response," Misamore said. However, her brother, Kelly Lambson, of Seattle, was her perfect match.

    On January 27, 2016, Misamore had both kidneys removed and began dialysis. She had to heal before the transplant could take place.

    "With God's grace, on April 12, I had a life-saving, successful kidney transplant. I could not love my brother more and am so grateful to so many people that selflessly offered their kidney, their love to a stranger, the prayers from all over, the support of my church, The Bridge Fellowship, and the amazing abilities and expertise of my Vanderbilt team," she said. "I encourage all women to know - when you feel lost, hurt, devastated, alone, hopeless, overwhelmed or sad - know that miracles happen in each breath, and that even in a dark time God will provide a light."

    In her spare time, Misamore enjoys time with her husband of 12 years and their fur-babies, a dog named Toby and a cat named Kathryn.

    "I love to go for rides with my husband in 'Ole Red' - his 68 Ford F150. I love baking. I love playing with Toby. I love spending time with my family and I love living."

    Misamore admires her mother, Lue Simerly, and her late grandmother, Ann.

    "Both of them play a key role in the woman I have become," she said. "In addition, I really am inspired and admire all women. I can look at any woman and find hope. There is a story and an amazing strength in every woman, if you just open your heart and see it."




    Dialysis Issues

    From MedScape, by Rebecca E. Cooney, PhD

    Building Better Blood Vessels

    Editor's Note: Regenerative medicine continues to flourish. Yet it is still a major breakthrough when new techniques are demonstrated to be both safe and effective in humans. One area with great promise is in the successful grafting of blood vessels in patients with renal disease.

    Medscape spoke with Laura Niklason, MD, who, along with colleagues, recently published a paper[1] in the Lancetreporting results from two clinical trials investigating the application of a new vessel grafting technique.

    Medscape: Let's begin by having you explain a bit about the issues facing patients with end-stage renal disease who must undergo dialysis. What are the particular challenges for this group of people?

    Dr Niklason: Patients who are on dialysis for kidney failure have a really challenging existence. They have to go to dialysis centers three times a week, for 3-5 hours each session, so that they can have their blood cleansed in the dialysis machine. It's a big burden for them and also very expensive for the healthcare system. It probably costs $80,000-90,000 a year for Medicare to care for each dialysis patient. It's burdensome for the patients, and it's also expensive for the system.

    One of the key drivers of patient discomfort and difficulty is failure of what we call "dialysis access." In order to do dialysis, we have to be able to withdraw blood from the patient at a high rate, around 1 L/min, to run it through a dialysis machine and clean the blood. In order to do that, we need a conduit, a connection between the patient's artery and the vein that is sitting underneath the skin. That conduit gets punctured with large-bore needles three times a week in order to draw blood out of a patient, clean it, and then return it to the patient.

    One of the things that really contributes to the difficulties of the dialysis patients is when this dialysis conduit fails. When they become clotted, otherwise obstructed, or infected, then this conduit has to be removed, replaced, or intervened upon. And that contributes to morbidity and overall patient misery.

    What we're hoping to achieve with this new product, the human acellular vessel, is to hopefully have a graft that will suffer fewer of these complications and/or last longer, so that patients can go substantially longer before they have to get a new conduit placed.

    Medscape: Given the difficulties with viable biological alternatives, tell us about how you and your co-investigators settled on culturing acellular vessels.

    Dr Niklason: I think, as a comparison to other biological materials, there are two real distinctions of our vessel vs other products or other things that have been tested in man.

    Many other biological conduits are derived from animal sources—typically, pig sources or bovine sources, although there are some conduits that are also grown in sheep. For all of those xenogeneic constructs, they all have to undergo crosslinking, often with glutaraldehyde, in order to limit the immunogenicity of the product. When you do that, it becomes very difficult for the patient's own self to repopulate, remodel, and maintain the graft. In some instances, those grafts undergo dilatation and basically flow mechanical failure because the host can't repopulate the tissues. [Read more]