Gift from Within: Cycling Across Canada, Gift of Life: Boston, Middletown CT, PKD Events: Huron, SD

PKD Life

From CTV Ottawa, Canada

Kidney donor cycles across Canada raising awareness

The woman cycling across Canada to raise awareness for organ donation, after giving her own kidney to her mother one year ago, is making a stop in Ottawa.

Eileen Fheng says her mother was suffering from polycystic kidney disease and was in desperate need of a new kidney.

Zheng donated her kidney to her mother in February 2015.

“Her health was deteriorating and it was deteriorating very quickly, and if I didn’t give it to her at around the time that I did, I don’t think she would be here right now,” said Zheng.

Now she wants to encourage others to sign up for organ donation.

“You can be a living organ donor and still be able to continue your life and live healthily,” said Zheng.

She started her ‘Gift From Within’ tour in British Columbia in May and plans to cycle to St. Johns Newfoundland.

Zheng admits the journey can become tiring, but in her weakest moments, she remembers her mother.

“I can’t even compare with the people that are actually sick and ill and have a disease and waiting for organs and going through dialysis or chemo – so I would say it is hard, but it’s not that hard,” said Zheng.

Zheng is currently fundraising and actively looking for sponsors to continue her journey. She is also encouraging people to not only sign up for organ donation but to let their loved ones know of their decision. You can find more information on her journey here.

From WBZ Channel 4 CBS Affiliate Boston

Donor Found For Methuen Coffee Shop Owners Seeking Kidney

A new sign posted outside Kiki and Wayne Bernard’s coffee shop means good news for the Methuen couple seeking a kidney donor.

In June, the sign outside Common Grounds read, “Kidney wanted, type O, inquire within.”

Now it reads, “Thank you. Thank you. We have a donor!”

Kiki suffers from polycystic kidney disease or PKD, a serious genetic disorder which causes cysts to grow in the kidneys until they can no longer function properly. And lately, hers have not.

PKD has no cure and the genetic component is strong. Kiki’s mother and sister both succumbed to the disease. Now, Kiki’s doctors say her kidneys have only about a year left and she needs a kidney transplant.

“It has progressed to where my kidneys are no longer functioning as they should. They’re functioning at about 20 percent,” Kiki said.

After posting the sign outside their coffee shop, Common Grounds, the couple received dozens of applicants but none were a perfect match.

However, Wayne’s niece, Lisa Twombley was.

“I kept telling her, it’s going to be me. I’m going to be your donor. You’re going to get one of these kidneys,” Twombley said.

Twombley is blood type O positive, just like Kiki. Now, she must undergo tests to make sure she his healthy enough to give up her kidney.

“It’s thrilling that she would do something like this,” Kiki said.

From Middletown Press, Middletown, CT, By Kathleen Schassler

Middletown Mayor Dan Drew perfect match for kidney donation to city woman; surgery date set

It seems that Mayor Dan Drew will go to any lengths to serve his city’s residents.

Even if it means giving up a kidney.

One local mom and lifelong Middletown resident was surprised by the high-profile match made by Yale-New Haven Hospital in her search for a living donor for a kidney transplant.

“It has been a crazy day,” said Olivia DiMauro, 45, by email on Monday. “I got a call the other day from Yale saying someone wanted to meet up with me.”

It turns out, DiMauro’s match was the mayor, who was tested along with others that stepped up to help. “Mayor Dan Drew was a perfect match for me,” she said. “Our surgery date is set and everything is moving forward. I still can’t believe it.”

Drew declined to comment for this story but did say he’ll need to rest a bit after the surgery but isn’t anticipating a lengthy recovery. According to city charter, Deputy Mayor Robert Santangelo acts as mayor during temporary vacancies in the mayor’s office.

The hospital stay and recuperation varies on the individual donor and the type of procedure performed, according to the National Kidney Foundation.

Joyce Albert, a donor nurse at Yale-New Haven Hospital, told the Press that after the procedure, the average hospital stay is two to three days and the doctor advises the patient to do no heavy lifting for six weeks.

Last January, DiMauro reached out to The Press to share her story. “I am looking to you for help in this as I do not know what else to do,” she wrote.

As a busy working mom of two teens, DiMauro said then that she worried about future limitations that polycystic kidney disease could impose on her life. Medical issues from the inherited condition led the city native to seek a living organ donor and a second chance at a healthy life. “I will have to start the dialysis process soon if I do not find a donor,” she said at the time.

Polycystic kidney disease is an inherited disorder in which clusters of cysts — sacs containing water-like fluid — develop within the kidneys. The cysts can grow very large and can develop in the liver and elsewhere, according to the Mayo Clinic. The disease can cause a variety of serious complications.

Added to the national organ transplant list in November 2015, DiMauro, a part-time stylist at Salon Cheveux, is currently enjoying good health — that is, apart from the need for a kidney, she said. Other same-stage patients her age usually have additional symptoms, according to Dr. David Minor, her nephrologist, DiMauro said.

Nevertheless, she, husband, Sal DiMauro, and children, Dante, 14, and Ava, 12, worry about her health. “They’ve seen my mom and my sister struggle,” said DiMauro, whose mother has been on dialysis since her grandchildren were in diapers.

DiMauro did not have to go through kidney failure, like her mother did, to learn she had the disease. Instead, she discovered it by the time she was a teenager, she said. “When you age, it gets more difficult,” said DiMauro. “My doctor wants to be proactive before we need to begin dialysis.”

Since the disease is hereditary, some family members are excluded from being able to donate. Husband Sal was tested but they learned he is not a match. [Read more]

From Plainsman, Huron, South Dakota

Road race early-bird deadline looms: 35th-Annual event will take place Sept. 3 in Huron

Andy’s Road Race, Bike Ride and Harvey Gleich Memorial Walk will once again raise funds for the Polycystic Kidney Disease Foundation in Harvey’s memory. From left are: Carissa and Noah Koops, Harvey’s daughter and grandson; Peggy Gleich, Harvey’s wife; and Laurie Marcus, Andy’s Road Race director. PHOTO CONTRIBUTED

Registration is now open for the 35th annual Andy’s Road Race, Bike Ride and Harvey Gleich Memorial Walk, which will be held Saturday, Sept. 3, at Memorial Park in Huron.

The road race, named after a former Huron track coach Andy Kleinsasser, is divided into various age groups running the 5K and 10K races. There is also a 5K fun walk and 5- and 23-mile bike rides for participants of any age and fitness level. For the younger kids, there is a fun run for elementary children (no registration fee required).

Again this year, the 5K fun walk honors the memory of longtime Andy’s participant and supporter Harvey Gleich.

Proceeds raised from walker registrations will be donated to the Polycystic Kidney Disease (PKD) Foundation in Gleich’s name.

Last year, the event raised more than $1,200 for the PKD Foundation.

The event will be held during the State Fair, and all participants will receive a free one-day gate pass to the Fair.

The S.D. Beef Council will provide free beef jerky to participants.

Medals will be awarded to top finishers in each division of the 5K and 10K races.

The 5K/10K race will be chip-timed by AllSportsCentral.

Early-bird registration for the run or bike ride is $25 until July 29 and $30 until Aug. 19.

Registration received between Aug. 20 and 30 is $35.

Walker registration is $30, which includes a donation to the PKD Foundation.

All registration fees include refreshments and a performance t-shirt.

Businesses interested in a sponsorship or a corporate rate for employee participants should contact Kim Rieger at 353-6573.

More information and registration is available online at www.huronregional.org/andys or www.allsportcentral.com or by calling Laurie Marcus at 350-2943.

Boston: PKD Walk; Gift of Life: Missouri, Longmont, CA five year success

Walking for PKD

From WCVB, Channel 5 ABC Affiliate, Boston

Sunday September 11, 2016: Boston Walk for PKD

Boston Walk for PKD raises funds to treat and cure polycystic kidney disease (PKD)

This year, Elizabeth Caruso will join thousands nationwide to come together and walk in support of those affected by PKD, one of the most common, life-threatening genetic kidney diseases. It affects hundreds of thousands in America and millions worldwide, who are in urgent need of treatments and a cure. PKD is the fourth leading cause of kidney failure.

The 2016 Boston Walk for PKD, sponsored by exclusive television partner WCVB, is planned for Sept. 11 at Artesani Park (1255 Soldier’s Field Road, Boston) with PKD patients, their families, friends and members of the PKD medical community fundraising and walking together to unite to fight and end PKD. WCVB'S Kathy Curran returns to emcee. Registration is at 9 a.m., with the Penny Kids Dash beginning at 10 a.m. and the Walk beginning at 10:30 a.m.

This is Elizabeth’s sixth time participating in the Walk for PKD, and her fourth time running the walker registration. She walks in support of her sisters, Ashley and Samantha, whose diagnoses came as a surprise in the past few years until the family discovered Elizabeth’s grandmother and father both have the disease, too. Joining her this year will be her husband, her parents, grandparents, aunts, uncles and cousins.

Elizabeth walks to raise awareness and funds in hopes that there will be a cure before her sisters need kidney transplants. She believes that walking for PKD makes a difference in the fight to end the disease because every year when she talks about the Walk or hosts a fundraiser, there are more and more people learning about PKD for the very first time.

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; more than 11,000 strong. The Walk for PKD is hosted in more than 50 cities nationwide. Since 2000, the Walk for PKD has raised nearly $24 million. This money raised supports the PKD Foundation’s efforts to fund research to find treatments and a cure, and to provide information and support to people affected by PKD.

Register for the Boston Walk for PKD at walkforpkd.org/boston.

About PKD

PKD patients in the U.S. are in urgent need of treatments and a cure. PKD causes cysts to grow in the kidneys, eventually leading to kidney failure. Once a person has kidney failure, dialysis or a transplant are the only options to treat the damage the disease has caused. Parents with the disease have a 50 percent chance of passing it on to each of their children. 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. A relatively rare form of PKD, autosomal recessive polycystic kidney disease (ARPKD), affects approximately 1 in 20,000 children, and often causes death in the first month of life.

About the PKD Foundation

The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for PKD to improve the lives of those it affects. We do this through promoting research, education, advocacy, support and awareness. Our goal is that one day no one will suffer the full effects of PKD. For more information about PKD and the PKD Foundation, visit pkdcure.org or call 1.800.PKD.CURE (753.2873).

Gift of Life

From Fulton Sun, Fulton, MO, by Rob Crouse

Westminster fraternity alumnus makes life-saving donation

Westminster College has been the source of countless stories where students and alumni have performed selfless acts of service to make a difference in the lives of other people. But perhaps the most remarkable of all stories is the sacrifice Tom Rigdon, class of 1970, made to save the life of his fraternity brother Rod Mohler, class of 1971.

The two men grew up only a few miles apart in Oklahoma, with Rigdon, 68, from Newkirk and Mohler, 67, from Ponca City. Rigdon and Mohler both enrolled at Westminster and become Sigma Alpha Epsilon fraternity brothers. Over the years they became close friends, getting together on occasion while life continued in their respective small towns. Rigdon became an attorney, and Mohler operated his own construction business.

Everything was going well for the two men until Mohler was diagnosed with polycystic kidney disease. His physician told him if he had to have kidney disease, this was the most slow-growing and would give him time to try to deal with the illness. After several years, Mohler finally began dialysis on his birthday, May 13, 2013. Since he had known for three years his kidneys were failing, Mohler had already placed himself on a donor list.

He spent the next two years on dialysis with no possible donors in the picture. His sister was rejected because of her small size and some kidney problems of her own. An attorney friend from Ponca City came forward to volunteer but was rejected because of his high blood pressure.

Rigdon checked on Mohler regularly to see how he was doing. In early 2015, the two men and Tom's wife, Mary, a William Woods graduate who had known Mohler for years, attended a wedding reception together and had an opportunity to visit in depth. Two days later, Rigdon called Mohler and said he was willing to donate a kidney if the organ was found to be a match.

The tests were conducted, and Rigdon's kidney was a match. On March 9, 2015, the surgery took place and was a success.

Today, both men are doing well. Mohler has returned to construction work remodeling houses, and Rigdon walks to his busy law office every morning.

"Tom Rigdon went above and beyond what any friend could ever be expected to do," Mohler said. "Words can never express how grateful I am that he has given me my life back."

From Longmont Times, Longmont, CA, By Karen Antonacci

mark of successful kidney transplant

Longmont resident Chris Allsup, 40, left, donated a kidney to his friend Arron Silva, 44, of Los Angeles, five years ago. Silva is in Longmont visiting Allsup to celebrate the anniversary. (Lewis Geyer / Staff Photographer)

The Silva family of California is vacationing in Colorado this week, celebrating a peculiar five-year anniversary.

Five years ago Tuesday, Chris Allsup of Longmont donated a kidney to his friend, Arron Silva of Los Angeles.

Allsup, 40, said the two met in college and kept in touch afterward, but when Silva came to Colorado in 2010 for Allsup's sister's wedding, the family knew something was off.

"I didn't know he was in such bad shape," Allsup said. "Both kidneys were in failure and he was doing dialysis all the time. ... When I saw him, he was just yellow. The dialysis wasn't cleaning everything out that it needed to, and he'd put on a lot of weight because there was a lot of foods he couldn't eat like greens and stuff like that because they weren't good for the kidneys."

Silva has a genetic disorder called polycystic kidney disease, in which cysts grow on the kidneys, eventually prohibiting them from properly filtering blood.

While the disorder is genetic, it strikes when the patient is an adult, usually in the 20s or 30s, Silva said.

Silva was diagnosed and placed on the list of people in Los Angeles County in need of a kidney. He was told the wait time for a kidney would be between four and seven years.

"I was on the list for one year without going on dialysis and then another year and a half on dialysis," said Silva, whose mother also had the disorder and died from complications associated with the cysts. "When I came up for Chris' sister's wedding, I had to ship up a bunch of my fluid because I was doing home dialysis."


When Allsup heard about Silva's disorder, he offered to donate a kidney, but Silva didn't think much of it initially.

"I had lots of friends — you know, 'I'll give you a kidney, I'll give you a kidney,' and they wouldn't really follow through. And I get it, there's all kinds of reasons why," Silva said. "So at the wedding he said, 'I'll give you my kidney,' but I didn't have the number (for prospective donors) with me because I figured if someone really wanted to they would push for it."

But Allsup was serious. He called Silva once he was back home in California and asked again for the number. From there, Silva said, the University of California Los Angeles hospital system staff corresponded with Allsup but kept Silva largely out of the loop.

"Someone can call and (the donor) sets it up," Silva said. "And usually when that is happening, they are not telling me the recipient any of what's going on. ... I told him, 'No worries if he needs to back out. I get it,' and he'd just call and say, 'I did another test today' and I would say 'OK, cool.'"

Allsup said from his perspective, it all happened very quickly.

"I had to bug him a couple times to get that (donor) number and I did and went down and got tested and it came back I was a match," Allsup said. "I did some testing out here and then I flew out to UCLA to get more testing and when I finished that, it was all very sudden. It was like all systems go at that point."

On July 19, 2011, surgeons transplanted Allsup's kidney in to Silva.

Silva's body had a minor rejection of the kidney one week later, the day they were supposed to have a going away dinner for Allsup. But it was only minor and things since then have largely been smooth sailing, Silva said.

Silva still has his two kidneys, which are roughly the size of footballs because of all the cysts. Occasionally a cyst will burst, causing him severe pain and he has to go back to see his kidney specialist. One of those times he agreed to take part in research that was using ultrasound technology to get a look at internal organs. When he saw his two non-functioning kidneys and Allsup's functioning kidney inside him via the ultrasound, Silva said he was shocked.

"It was pretty scary. I had never seen it myself. There are just all these little balls all over my kidneys," Silva said. "And the doctor showed me how my native kidneys had hardly any fluids going through them and he showed me Chris's transplanted kidney full-on moving fluids. It's amazing."

Allsup said the two joke about the transplant all the time, with Allsup saying Silva owes him big time.

"I don't tell everybody about it," Allsup said. "It just seemed like the right thing to do."

Pay it Forward: Kidney Donation Voucher, Home Dialysis

Paying it Forward

From Health Line, by Kristen Fischer

Donate a Kidney Now, Get a Voucher for One Later

An innovative program allows you to help a loved one — and a stranger – with a kidney transplant.

Howard Broadman, a lawyer and retired judge from California, knows his grandson, Quinn, will probably one day require a kidney transplant.

By the time Quinn needs his help, however, Broadman said he may be dead or too old to donate a healthy organ.

“I approached UCLA and asked, ‘Why don’t I give a kidney to someone who needs it now, then get a voucher for my grandson to use when he needs a transplant in the future?’ And that’s just what we did,” Broadman said in a statement.


How the program works

Broadman worked with Dr. Jeffrey Veale, a transplant surgeon who helped initiate the program at the Ronald Reagan UCLA Medical Center.

The voucher program is relatively simple.

A person donates their kidney and selects a recipient for a future donation.

The recipient receives a voucher that can be used if they need a living kidney donation. Living kidney donations are made when a person who is alive donates one of their two kidneys and goes on living with the remaining one.

The program could change the face of kidney donation in the United States, bringing more donors to the operating table.

The American Society of Transplant Surgeons has endorsed the program, which is being used at nine other transplant programs across the United States under the umbrella of the National Kidney Registry (NKR).

Essentially, you donate when it is convenient and others receive if it’s necessary, Veale told Healthline.

There are 26 million people with chronic kidney disease in the United States. Some may progress to end-stage renal disease and would be ideal candidates for transplant, the National Kidney Foundation reports.

There also are 500,000 people in the U.S. with a functioning transplanted kidney. The new organ typically lasts 10 to 20 years.
Risks, logistics, and legalities

Ruthanne Leishman, who heads up the Kidney Paired Donation program for United Network for Organ Sharing (UNOS), said transplant surgery comes with pain and a risk of infection.


There is, however, only a low risk of death.

There is a waiting list for deceased donations but not for living donations, Leishman said. Her organization manages deceased donor allocation on behalf of the Health Resources and Services Administration, an arm of the Department of Health and Human Services.

Unlike donations from the deceased, which only go through UNOS, living donations go through a variety of organizations such as the NKR.

Veale told Healthline that a donor can add up to five people onto a voucher. Potential recipients must have kidney disease and the voucher can be used only by the first person who needs it.

For some families with genetic polycystic kidney disease, they usually know someone will need a transplant in the future, so being able to name multiple possible recipients can be helpful.

“Whoever would need the transplant first, the voucher would go to that person,” Veale said.

Vouchers are not transferable and they expire when the donor passes away. In that case, if the recipient does not use it, the donation becomes altruistic, meaning it would go to a stranger instead of a specified recipient.

Vouchers cannot be sold to another person and cannot be withdrawn.

To make sure the recipient is who they say they are, doctors complete human leukocyte antigen (HLA) typing and record the recipient’s blood type — a sort of blood fingerprinting system. [Read more]

Dialysis News

Health Leaders Media, by Scott Mace

Behind the Expansion of Home Dialysis, Rigorous Training and Texting

More training and the use of timely communication are helping home dialysis patients overcome some of the workflow problems they face there.

Home-based kidney dialysis remains a relative rarity, with only one in ten U.S. patients able to receive peritoneal dialysis and hemodialysis at home, according to national averages.

But driven by the staggering cost of outpatient dialysis treatments and improvements in home dialysis technology, one chain of dialysis clinics has been able to double that average. And it aims to double it again through an innovative program involving feedback from patients as well as nephrologists and payers.

The costs paid by Medicare tell the tale: While dialysis patients represent less than 1% of the Medicare population, they also represent 6% to 7% of the total cost of Medicare.

Satellite Healthcare, based in San Jose, CA achieved its doubling through its Wellbound Centers, which are dedicated to peritoneal dialysis and hemodialysis and include a training room or space to instruct patients how to perform home dialysis. It serves 7,000 patients in six states.

For two days in June, Satellite brought patients from its service area to San Jose, CA to brainstorm new technology and workflows in an effort to double its home dialysis rate again to 40%.

"There's absolutely a feeling in the nephrology community that we can bring the benefits of home therapies to a greater number of patients," says Graham Abra, MD, medical director at Wellbound San Jose. He is also a practicing nephrologist at Stanford Medicine and clinical assistant professor at Stanford Medical School.

Less Travel, Better Quality of Life

A major benefit of home dialysis is eliminating the travel time required for patients to get to and from dialysis clinics. "They have clinical benefits, in that these therapies in general often lower the number of blood pressure medications and phosphorous-binding medications that patients need to take," Abra says.

"In general, people's quality of life appears to be better on these therapies than on in-center therapies. They recover more quickly after the dialysis treatments that are performed at home. An average in-center patient might take 6 to 8 hours to feel normal after a dialysis treatment, and that could be as low as an hour or so for someone doing home treatment."

Just as Abra believes the dedicated training space at Satellite Wellbound centers has made a big difference in the amount, quality, and effectiveness of home dialysis training, he believes a recent brainstorming session could help dialysis patients at home to get past some of the dialysis workflow problems they face there.

"We heard a lot about the challenges of managing the supplies that are used in the home for peritoneal dialysis and home hemodialysis," Abra says.

Timely Communication

"We heard a lot about the challenges of setting up someone's house in order to do the dialysis at home. I think those are really important details that impact people's quality of life, and often aren't front-and-center in a nephrologist's mind necessarily, [or] even the clinic staff."

Abra points to the Apple iPhone's text messaging as an example of a technology which is currently underutilized to smooth issues and improve patient experience.

He says he was "really struck by the idea that many of our patients have struggles with communicating in a timely manner back and forth with the clinic, with keeping track of their treatment logs, with supply ordering, with alarms that frequently come up on [their home] machines for which they have to search through a big binder of stuff to figure out what they are."

Abra thought technology could be "very helpful."

"All these things kind of scream, 'gosh, put that in an app that can be easily accessed on a tablet or a smartphone, so that you can quickly communicate with your healthcare provider either by text or image.'"

"You can quickly look up common things that are happening with your dialysis machine and troubleshoot it, you can potentially send in your logs electronically so that you're not dealing with pencil and paper, and your healthcare team has timely access," he says.

"There's been huge impetus and focus on advancing the quality."

Satellite executives are in the midst of ranking the many ideas that came out of the workshop, and plan to roll out innovations at small scale in several Wellbound Centers before deploying them widely.

Transplant Games, Gift of Life, Dialysis Cruising

Gift of Life

From Greensboro.com, North Carolina, By Jennifer Atkins Brown

'We are now connected for life,' kidney donor says

Hugh Black (left) donated a kidney to Scott Greene after meeting him at a Presbyterian Pilgrimage. “I made sure enough people knew about what I was doing so I wouldn’t back out,” Black jokes.

Thirteen people die each day waiting for a kidney.

Scott Greene, 53, had been on the national transplant waiting list for almost two years when he received a kidney May 31 — from a man he met at a spiritual retreat.

Of the 19 people who completed paperwork to be considered as a donor, all but one knew Greene through his work and leadership with the North Carolina Presbyterian Pilgrimage, a three-day Christian spiritual growth experience.

One of them was Hugh Black, a perfect match.

Greene and Black met five to six years ago through the Presbyterian Pilgrimage, and Greene was the photographer at Black’s wedding.

“When I got the call that I was a match and made the decision to give Scott my kidney, I made sure enough people knew about what I was doing so I wouldn’t back out,” Black said with a laugh. “At first I was apprehensive, then honored and then humbled to think that something inside me could give life to someone else.”

Black, 60, knew Greene’s other option was dialysis for the rest of his life, four hours a day, three days a week, and learned a living donor kidney can prolong life 20 years.

“After that I had no hesitation,” Black said. {read more]

Life with PKD

From Hill Country Community Journal, Kerrville, TX

Local athletes participate in Transplant Games

Kerrville area residents (from left) Pat Mossman, Niki Pillatzke and Dene Kyrish all participated in the recent National Transplant Game in Cleveland, Ohio.

Hill Country residents recently returned to Texas after participating in The National Transplant Games held June 10-15 in Cleveland, Ohio. The Games are an opportunity for individuals from across the USA to “Celebrate, Compete, and Commemorate.”

The Ultimate Gift of Life supported three people in their efforts to compete and celebrate life during the Games. They joined Team Texas Life Warriors, a group of 65 athletes and 88 others traveling from Texas. A total of almost 10,000 living donors, transplant recipients, donor families and supporters came together for five days of competition, special events and remembrance of the donors who have saved lives.

Individuals competing from the Kerrville area were Dene Kyrish, Pat Mossman and Niki Pillatzke.

Kyrish donated a kidney to her sister, Dorcella Sunday, almost 10 years ago. Sunday, from Frederickburg, Texas, was diagnosed with Polycystic Kidney Disease and needed a kidney transplant. Kyrish agreed to be tested and was a match. Kyrish participated in the track and field events in Cleveland and won gold medals in the 400M, 200M and 100M events. Her husband, Leon, was her coach, and they both also participated in the 5K.

Mossman, from Kerrville, participated in the Virtual Triathlon by competing in the 500-yard swim, 20K cycle and 1,500M run on Saturday, Sunday and Monday. He medaled in all three events and once the times were combined, he won a gold medal for the Virtual Tri. Mossman gave a kidney to his brother-in-law in 1998 when he was suffering from kidney disease. Mossman’s wife, Debbie and his 5-year-old grandson were there to cheer him on.

Pillatzke received a liver when she was six months old. Today, she is 14 and was able to participate in the 5K walk/run, 100M run, softball throw and long jump. She won a gold and two bronze medals in her events, competing against a very strong group of transplant recipients in the 13-19 year old age group. Her grandmother, Terry Outfleet, attended and joined all the rest of the Texas Team in congratulating her on her success.  [Read more]

Dialysis News

From Cruisers Choice, By Andy Hodges

Kidney Dialysis for Cruise Ship Passengers

Many patients with kidney disease are unable to travel on cruise ships because they require a dialysis machine when traveling, but that recently changed and the process is easier than you think.

There's a company called Dialysis at Sea Cruises that helps individuals and their families experience their cruising vacation by offering the procedure right on the ships. They send a board eligible/certified nephrologist with two or more dialysis nurses on the cruise.

"Our medical staff is English speaking and recruited primarily from North America. Twenty-four hours a day, patients can 'beep' our shipboard dialysis staff, and if necessary, they can reach our stateside medical support personnel around the clock," their website reads. "We use the new generation Fresenius 2008K for your dialysis treatment. It provides maximum flexibility for your specific prescription with excellent performance and reliability."

Dialysis at Sea provides services on select cruise lines they include: Royal Caribbean, Celebrity, Holland America and Norwegian. There has been some talk that Carnival might be added as another company to offer these services, but we haven't been able to verify.

The cost of dialysis on cruise ships is based on a flat rate determined by the length of the trip. While some insurance companies might pay a percentage, it's an out-of-pocket expensive until the kidney patient is reimbursed. Medicare and Medicaid do not cover this service, which is very unfortunate.

"The DASC staff members on board the ship were pleasant, helpful, and accommodating, especially Johnny the RN and Marc the LPN, and Dr. Karp. The dialysis facility was comfortable and the use of large beds was very relaxing," Janice and Pasquale wrote.

Dialysis is a treatment that filters and purifies the blood using a machine to keep a body in balance when the kidneys fail. The procedure has been used since the 1940s. This procedure helps keep your body in balance when the kidneys can’t do their job. Dialysis was discovered by Dr Willem Kolff, a young Dutch physician, who constructed an artificial kidney in 1943. Since then, he's been considered the father of dialysis.

According to the National Kidney Foundation, the kidney dialysis side effects when on a cruise may be the discomfort when the needles are put into the fistula or graft, but most patients have no other problems and the treatment itself is painless. "However, some patients may have a drop in their blood pressure. If this happens, you may feel sick to your stomach, vomit, have a headache or cramps. With frequent treatments, those problems usually go away."

Some might call it a medical breakthrough to offer the treatment on cruise ships, and it seems to be gaining more popularity. Right now, there appears to be more people using the service on Holland America than any other cruise line.

PKD: New Drug Target, Kidney Transplant With No Diaylsis, Engineered Blood Vessels, Kidney Calcification

PKD Research & Medical Issues

From Science Daily

Virtual tissue technology reveals new drug target in polycystic kidney disease

Advanced computer simulations show that failures of cell adhesion and inhibition cause two types of kidney cyst formation

The upper images show two views of the mushroom-shaped cysts that result from the loss of cell adhesion in the nephron. The lower images show the formation of cysts that spread across the surface of the nephron like plaque due to the loss of contact inhibition. Both images were generated in CompuCell3D.
Credit: Indiana University

Using virtual tissue technology, researchers at Indiana University have identified a potential new drug target in the fight against polycystic kidney disease, an illness with no effective FDA-approved treatment that affects 200,000 people per year in the United States.
The study appears in the journal Molecular Biology of the Cell. It reveals that errors in how cells stick together give rise to two forms of kidney cysts.

These cysts can cause an adult kidney -- normally about the size of a fist and weighing less than a pound -- to grow to the size of a football that weights 20 to 30 pounds. Currently, only dialysis or a kidney transplant can delay death from the disease.

"This is the first study to show the actual cell behaviors caused by mutations in genes causally linked to polycystic kidney disease, an important new step in the path towards treatment," said Dr. Robert L. Bacallao, associate professor of medicine at the IU School of Medicine in Indianapolis.

The technology used in the study was developed by the Biocomplexity Institute at the IU School of Informatics and Computing, directed by James A. Glazier, professor in the IU Bloomington Department of Intelligent Systems Engineering. Julio Belmonte and Sherry G. Clendenon of the Biocomplexity Institute are the primary authors on the paper.

"Not many medical researchers are employing virtual tissue technology," Glazier said. "The majority of researchers who use these simulations are pursuing basic science. So it's extremely exciting to apply the technology to research directed at identifying drug targets to help people suffering from a specific disease."

To conduct the study, Glazier's team took data from Bacallao's medical research to develop a virtual nephron -- the core, tube-shaped functional unit of the kidney -- using an open-source software program. Called CompuCell3D, the program was developed by Maciej Swat of the Biocomplexity Institute, who is also a co-author on the paper. The computer model simulated cell activity triggered by mutations in PKD1 and PKD2, the genes implicated in polycystic kidney disease. [Read more]

From News Wise, University of Maryland

Patient Avoids Dialysis Through Simultaneous Polycystic Kidney Removal and Kidney Transplant During 28-Person Kidney Swap

Baltimore, Md. – June 27, 2016 – In a first-of-its-kind procedure in the United States, a patient was able to avoid dialysis when surgeons simultaneously removed two diseased kidneys and also transplanted a kidney from a living donor – all as part of a 28-person paired kidney exchange (PKE). The procedure, performed in May on a patient with polycystic kidney disease (PKD), eliminated the need for the patient to ever undergo dialysis.

“We worked closely with the National Kidney Registry, which coordinated the 28-person swap that led to a compatible living donor for our patient,” says David B. Leeser, MD, associate professor of surgery at the University of Maryland School of Medicine (UM SOM) and chief of kidney and pancreas transplant at the University of Maryland Medical Center (UMMC), who developed the plan. “On the day of the transplant, we removed our patient’s two large kidneys, weighing 10 pounds each, precisely timing our procedure with the hospital that was providing the donor kidney, so our patient was able to avoid dialysis.”

The recipient’s wife was unable to donate a kidney to her husband, due to incompatible blood types. Because kidneys from living donors have better outcomes than those from deceased donors, a kidney swap was the only option for him to get a living donor kidney. As part of the PKE, the patient’s wife donated a kidney to another patient, continuing the chain.

“The success of the procedure was even more dramatic because the UMMC pair was the key to fast-track repair for this swap that involved 28 surgeries over a three-week window,” says Garet Hil, CEO of the National Kidney Registry (NKR). “These kinds of bold and complex breakthroughs are what we have come to expect from NKR member centers that are always looking to find new ways to improve the lives of patients suffering from kidney failure.”

Leeser explained that University of Maryland surgeons routinely remove both polycystic kidneys during a transplant, with one team working in one operating room, and another team in an adjacent OR to procure the donor organ. While another center had combined PKD removal with a PKE swap for a patient who was already on dialysis, this procedure was especially complex due to the need for precise timing in the absence of dialysis. [Read more]

From International Business Times, By Vittorio Hernandez

Engineered blood vessels top list of new medical technologies worth watching

The bioengineered blood of Humacyte, called Humacyl, has the potential to eliminate surgeries to resectioning the existing blood vessels of a patient for procedures such as coronary artery bypass. Humacyte

Halfway through 2016, several medical breakthroughs have been made by startups and established research establishments expected to have a major impact on medicine in the coming years. Leading the list is Humacyte’s engineered blood vessels.

The North Carolina-based startup grows human tissues in labs which could be implanted safely in the body. Designed for kidney dialysis patients, Humacyte uses donor cells to grow human tissue needed to make the blood vessels, reports The Wall Street Journal.

The patients’ immune system does not reject the blood vessels since Humacyte cleanses the donor cells prior to implantation. When the bioengineered blood vessels are merged with natural cells, the patient is less prone to infection and more durable compared to metal tubes usually used to facilitate blood flow during dialysis, according to two mid-stage studies by Humacyte, published in the Lancet journal in May.

Making blood vessels is a step forward in bioengineering functioning human tissues which regenerates similar to natural tissue, says Laura Niklason, co-founder of Humacyte and anaesthesiologist and scientist at Yale University. She adds engineered blood vessels are still a far cry from engineered whole organs which could be about 20 years away.

Humacyte is just one of the institutions involved in tissue engineering. At Harvard University, Jennifer Lewis uses a 3-D bioprinter to layer a mix of cells in the form of blood vessels. Mesoblast in Australia is developing tissues grown in the lab made from stem cells for use to repair organs or form new blood vessels. Another startup, Organovo in San Diego, uses also 3-D printing to make kidneys and livers for transplant, reports Statnews.

The bioengineered blood vessel of Humacyte, called Humacyl, is waiting for approval by the US Food and Drug Administration. The product has the potential to eliminate surgeries to resectioning the existing blood vessels of a patient for procedures such as coronary artery bypass by the use of Humacyl instead, reports CNBC. [Read more]

From News-Medical, By Jonas Wilson, Ing. Med.

Calcification and the Kidneys

Calcification is the abnormal accumulation of calcium salts in body tissue. This abnormal accumulation of calcium in the kidney is referred to as nephrocalcinosis, which means a generalized increase in the kidney’s calcium content rather than a localized increase seen in calcified renal infarction and tuberculosis.

Nephrocalcinosis can be associated with renal stones, however, it is more likely to be due to an underlying metabolic disorder. It may be divided into three categories although there is a substantial degree of overlap between them.

These categories are chemical, microscopic, and macroscopic nephrocalcinosis. It can also be differentiated into medullar and cortical nephrocalcinosis.

In chemical nephrocalcinosis, there is predominantly an increase of calcium in renal cells. This increase is seen particularly in the tubular epithelium and results in significant compromise to renal function and structure, leading to increased water, potassium, sodium, magnesium, and calcium excretion.

Microscopic nephrocalcinosis is only seen with a magnifying instrument and presents with calcium precipitates in crystalline form as phosphate and/or oxalate. Macroscopic nephrocalcinosis presents with large areas of calcifications that do not require magnifying in order to be seen.

The most frequent form of nephrocalcinosis is medullary nephrocalcinosis. It is characterized by the involvement of the renal medullary pyramids. Moreover, it usually is associated with dysregulation of calcium homeostasis (balance or equilibrium).

Cortical nephrocalcinosis is a much rarer form of nephrocalcinosis and it typically involves the entire renal parenchyma. Serious metabolic derangements like end-stage kidney disease, hyperoxaluria (excess oxalate excretion in the urine), hemolytic uremic syndrome, and polycystic kidney disease are frequently implicated in cortical nephrocalcinosis. [Read more]