PKD Fundraising, CarrierCheck: DNA Testing, Need Kidneys: Georgia, Gift of Life: Hyattsville, MD, PKD Kidney Breaks Guinness Record

PKD Fundraising

From The Post-Journal, Jamestown, NY, by KATRINA FULLER

Change For Chihopi Fundraiser Expands For Second Year

Bemus Point teens Allyssa Seeley, Cameron Rowe and Taylor Samuelson are gearing up for the second annual Change For Chihopi yard sale fundraiser for Camp Chihopi. This year, the event will not only feature a yard sale, but also a pulled pork dinner and a basket auction. P-J photo by Katrina Fuller

BEMUS POINT — A few area teenagers are bringing together a bigger and better fundraiser for Camp Chihopi this year.

Taylor Samuelson and Allyssa Seeley, along with Cameron Rowe and Madison Russo are continuing their success with last year’s Change For Chihopi yard sale fundraiser by expanding it. The teenagers will be seniors at Maple Grove High School in the upcoming year, and they are excited to help benefit a camp that gives a great summer experience to children who have had liver or intestinal transplants.

Aside from the yard sale, which will offer hundreds of items, the crew has organized a barbecue pulled pork dinner for early August with the help of Farmer Brown’s and a basket auction with items from businesses across the area.

Camp Chihopi is a part of the Childrens Hospital of Pittsburgh of UPMC, and offers a four-day experience of camp life with other children that have had similar medical experiences. The camp is for children ages 7 to 15 that have received liver and/or intestine transplants.

Last year, Samuelson and Seeley created the Change for Chihopi fundraiser by hosting a yard sale and accepting donations that they delivered in person. The pair worked as camp counselors-in-training last year.

For Samuelson, the fundraiser and volunteering opportunity were highly personal because her brother, Ryan, had attended camp there. He was born with a genetic disorder called autosomal recessive polycystic kidney disease.

Ryan has had four transplants in his life.

This year, Farmer Brown’s has partnered with Chihopi to hold a pulled pork dinner, which will include a pulled pork sandwich, coleslaw, baked beans, a brownie and a drink for $10. A basket raffle with baskets from businesses across the area will also be held, including items and certificates from places like Guppy’s, Honeycomb Hair Salon and Lighthouse Market.

Samuelson said the funds raised will go to a good cause. She said she is glad to see the event is expanding to include other things.

“It just helps to keep it fresh and keep the community involved,” Samuelson said. “Just stop by and see what it’s about.”

Seeley said even the smallest donations help the camp.

“It’s definitely going toward a great cause,” she said. “The children appreciate every bit of it.”

The event is scheduled for Aug. 4,5 and 6 from 9 a.m. to 7 p.m. and will be held at 3635 Route 430 in Bemus Point. To donate directly, visit www.givetochildrens.org/changeforchihopi.

PKD Research

From Eureka Alert

Sema4 partners with Helix to launch CarrierCheck™

A new, easy way for consumers to access a genetic screen for 67 hereditary diseases

THE MOUNT SINAI HOSPITAL / MOUNT SINAI SCHOOL OF MEDICINE

Sema4, an interdisciplinary health information company focused on empowering people to take charge of their health and data, today announced the launch of CarrierCheck™, a simple saliva-based test that provides individuals with a snapshot of how their DNA may affect their future children. CarrierCheck, the only carrier test that screens for 67 conditions that can be ordered by consumers online, was developed in collaboration with Helix, a personal genomics company that today launched the first online marketplace for DNA-powered products.

"Sema4 and Helix are perfectly aligned in their missions to help consumers gain greater access and understanding of their personal genomic data," said Sema4 CEO Eric Schadt, PhD. "We are excited to launch CarrierCheck, our first product on the Helix platform, to empower consumers with the understanding of their own DNA and gain insights useful to their future family planning."

While many companies, including Sema4, currently offer physician-ordered carrier screening tests, CarrierCheck stands apart in providing individuals with an online ordering pathway to a genetic test with easy-to-understand results that can reveal an individual's probability of being a carrier for any of the 67 hereditary conditions tested-- including cystic fibrosis, sickle cell disease, and polycystic kidney disease.

The process is simple: A consumer purchases CarrierCheck on helix.com and is then directed to the Sema4 website to create an account and complete a brief health history questionnaire. A physician from Sema4's partner network reviews the health history to ensure CarrierCheck is appropriate for the individual. Once approved, a saliva collection kit is mailed to the consumer. The saliva sample is then sent to Helix's CLIA- and CAP-accredited Next-Generation Sequencing lab, where Helix sequences the DNA and securely stores it for the customer. The portion of genetic data relevant to CarrierCheck is delivered back to Sema4 for analysis. Each customer can track their test and then view their personalized CarrierCheck report via their online Sema4 account, and genetic counseling services are also available to help customers understand their reports.

"We have been working with the Sema4 team since before their spinout from Mount Sinai, and we are proud to be working with a partner that is committed to pairing clinical-grade interpretation with our high-quality sequencing," said Justin Kao, Co-Founder and SVP of Helix. "Carrier screening is one of the most well-known and sought after types of DNA tests, and we are proud to feature CarrierCheck in our marketplace to provide people with an accessible carrier screen that also offers genetic counseling support."

Helix's proprietary technology, called Exome+, reads every letter of all 22,000 protein-coding genes in your body, which produces 100 times more data than most consumer genetics companies. CarrierCheck is available to purchase for $199 plus a one-time cost of $80 for the Helix DNA kit for new customers. With Helix, consumers only need to get sequenced once to access CarrierCheck and other products on the Helix marketplace. CarrierCheck and the Helix DNA kit are now available for purchase on the Helix website.

Gift of Life

From Hyattsville Life, Maryland, BY SANDY LUNDAHL

Chelsea School administrator with PKD receives ‘greatest gift’ from student’s father

Kristal Weems-Bradner, Interim Co-Head and Middle Division Principal at the Chelsea School in Hyattsville, shakes hands with Alec Casey at his graduation recently. In June, Alec's father Chris (not pictured) donated a kidney to Weems-Bradner, who has polycystic kidney disease. Photo courtesy of Pete Broyles, Chelsea School

There are many stories about educators who change students’ lives. But sometimes, it’s a student — or their family — who changes the life of an educator.

Kristal Weems-Bradner was diagnosed with polycystic kidney disease in her late 20s, a genetic disorder that runs in her family and can result in kidney failure. Now 48, Weems-Bradner has been on daily, peritoneal dialysis for more than two years. Weems-Bradner is the Interim Co-Head and Middle Division Principal at the Chelsea School in Hyattsville.

“My mother, some of my aunts and many of my cousins, including male cousins, all have the disease,” Weems-Bradner said. She says her mother received a kidney from a deceased donor that lasted for 6-7 years and then she returned to dialysis for the remainder of her life. Her mother died in January 2016.

“I knew what to expect,” said Weems-Bradner.

Polycystic kidney disease (also called 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. PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure, according to the National Kidney Foundation.

Weems-Bradner was on the transplant list, on dialysis and waiting for a deceased donor while friends and relatives were tested to see if any of them were a match. Her son, the best match, was disqualified when they learned he also has the gene for polycystic kidney disease.

Many people who need organ and tissue transplants cannot get them because of a shortage of donations, according to the National Kidney Foundation. Of the 123,000 Americans currently on the waiting list for a lifesaving organ transplant, more than 101,000 need a kidney, but only 17,000 people receive one each year. Every day 12 people die waiting for a kidney.

Two years ago, Weems-Bradner spoke to a biology class at Chelsea School about how kidneys function and different ways they stop working. After the class, Alexander (Alec) Casey offered her something precious: Alec offered to donate one of his kidneys. Unfortunately, donors must be at least 18 years old.

Fast forward two years.

“I’m 18 now,” said Alec, who recently graduated from Chelsea School. “Do you still need that ‘thing’?” he asked Weems-Bradner. “I want to give you my kidney,” Alec says he told Weems-Bradner the day after his 18th birthday. “She told me that I had to talk with my parents.”

With his parents’ approval, Alec went through the questionnaire process, but stopped when he learned — incorrectly — that people with tattoos could not donate. Rather, prospective donors are advised not to get a tattoo before donating because of the risk of infection.

That’s when Alec’s father, Chris Casey, 66, stepped in and went through the same extensive process and found out that he was a perfect match for Weems-Bradner.

Chris wanted to give back to a school and school official who had given so much for his son.

“It’s because of my affection for Weems-Bradner and the [Chelsea] school,” said Chris. “My son had been in public school and was not receiving the academic support he needed. Within 18 months of attending [Chelsea] he made substantial progress despite his dyslexia and ADHD. He received the highest score in the ACT reading test and was declared ‘college-ready.’”

Chelsea School is a small college-preparatory school for students with learning disabilities or Attention Deficit Disorder or Attention Deficit, Hyperactivity Disorder. Chelsea School serves students in grades 5 through 12.

“We try to build strong relationships with our students and family,” Weems-Bradner said. Each teacher becomes an advisor to two or three students, she explained, and stays in contact weekly with the family initially and then at least monthly to inform parents of their child’s progress and to find out about potential problems as early as possible.

“She [Weems-Bradner] changed my thinking about school and life,” Alec said. “When I first came to [Chelsea], my main purpose was definitely not school. I was fighting a lot. She gave me lots of advice and we had a really good connection. I would call her more than my advisor whenever I needed help.”

Weems-Bradner says she is “blown away” when she thinks about Chris’s donation of his kidney to her. She described her feelings in a Facebook post on June 30, 10 days after surgery:

I am an African American woman and I need to thank a white man for saving my life. In this day and age of such turmoil, especially between the races, … What are the chances of this man being a direct match when I had been waiting on the transplant list for 2 years without any potential matches (living or cadaver). On June 20th, Chris donated a kidney to me. This is one of the greatest gifts anyone has ever given to me. I am eternally grateful to [the Casey] family, for they are truly a blessing to me. … We are surrounded by hate, distrust and malice [and yet] there is truly good in the world, and there is truly hope!

Donation is not risk-free; it carries the same risk profile as having an appendix removed, says Give a Kidney, a charitable organization that promotes altruistic or non-directed living kidney donation. But it’s important to know that it is generally considered very safe to live with one kidney. Most people with one kidney live healthy, normal lives with few problems, says the National Kidney Foundation. In other words, one healthy kidney can work as well as two. [Read more]

Living with PKD

From WJBF, ABC Affiliate, Evans, GA By Samantha Williams

Local family in desperate need of kidneys

Polycystic Kidney Disease runs in the Browning family’s genes and has shown up in three generations so far. This family is heartbroken over recent news. A mother and a daughter are in desperate need for kidney transplants, but since the disease runs in the family, other family members can’t help.

Doctors recently told one of them that it’s crucial to get a transplant by the end of this year.

“I just want to see Jenna Claire grow up. She wants to be a vet, so I want to see that,” Angie Moon said.

She went to the doctor in December and found out her kidney function had dropped to 25 percent. When she went back just three months later, it had dropped rapidly to 18 percent. That’s when doctors told her she needs a kidney transplant by the end of the year or she will be put on dialysis.

“I knew what my long term life would be, would be dialysis, bad kidneys, transplant, but my mom didn’t have those problems until age 65. I figured I had more time. I didn’t think I would be sitting here at 43,” Moon explained.

It all started with Angie’s grandfather. He was 62 years old and at the stage where he needed to be put on dialysis, but he passed away before that was possible.

Angie’s mom, Phyllis Browning, was diagnosed with Polycystic Kidney Disease nearly 30 years ago and has been on MCG’s transplant list for the last four years. Like her father, Phyllis said she never talked much about her need for a kidney.

“That’s kind of been my theory since ’89… to live my life as best as I can, and if it’s God’s will that I get a kidney, I’m all up for is play,” Browning said.

But that all changed when her daughter, Angie, got blood results in March. Angie said she hasn’t fulfilled everything she’s destined for here on earth, yet. She said God isn’t finished using her.

“I know his plan for me would be a living donor because a living donor’s kidney gives me 25 years without dialysis, and if I take a deceased donor, it’s only good for ten years,” Moon said.

And Angie’s daughter, Jenna Claire, said she not only hopes her mom and granny find donors, but she hopes she doesn’t have to deal with the disease and heart ache in her lifetime.

“It kind of made me feel a little worried… yes, technically worried. I want her to be at all of my performances. I would say donate if you can,” Jenna Claire said.

“If this touches your heart, and you feel like you want to donate to my mom or me, don’t hesitate, whether it’s your blood type or not,” Moon said.

Jennifer Browning, Angie’s sister, will also need a kidney at some point in the future. You can be the answer this family is so desperately praying for. Angie said you can contact the transplant locations and request to be a donor.
She explained the process is not difficult and will be completely paid for by their insurance.

If you feel compelled to donate, call the transplant centers: Phyllis is at Augusta University Medical Center: 706-721-2888. Angie is at the Medical College for South Carolina: 843-792-1594.

From The Sun, United Kingdom, By Lizzie Parry, Digital Health Editor

RECORD BREAKING Doctors remove the world’s largest kidney from man – and it weighs MORE than a newborn baby

Doctors have removed the 'world's largest kidney' from a man at Dubai Hospital

Ahmad Saeed, 56, from Dubai, suffered polycystic kidney disease causing giant cysts to engulf his kidneys.

DOCTORS have removed the "world's largest" kidney from a man in Dubai.

The organ weighed 9lbs 3oz - more than an average newborn baby.

And the 56-year-old patient also had his second kidney, which was also severely enlarged, removed.

The operation took place at Dubai Hospital, after the man complained he was unable to walk or talk - and he is now living on dialysis while waiting for a kidney transplant.

Surgeons operated on Ahmad Saeed, taking out both of his enlarged kidneys, after diagnosing him with polycystic kidney disease.

It had caused several cysts to form on the man's kidneys.

The larger of the two measured 34cm by 17cm in diameter, and weighed 9lbs 3oz.

In contrast, a normal kidney measures around 12cm by 6cm and weighs 5oz.

Doctors at the hospital said the kidneys are the largest ever reported.

The last world record, they noted, was set at 4lbs 6oz.

Mr Saeed's polycystic kidney disease, caused his kidneys to swell in size.

"Before the surgery, I felt so tired and had an enlarged stomach. I couldn’t walk properly and I just wanted to stay in my room with the door closed." Ahmad Saeed

They grew so big they were soon crushing his internal organs, forcing him to undergo surgery.

Mr Saeed told how his failing health led him to become depressed and withdrawn.

He said: "Before the surgery, I felt so tired and had an enlarged stomach.

"I didn’t feel like talking to friends or going out at all.

"I couldn’t walk properly and I just wanted to stay in my room with the door closed.

"Now, I am back to normal, I can move, I can jump and I can run. No one believes that I have had both kidneys removed."

PKD Research: Grapefruit Juice Useful Against Cysts; Swimming & Shaving Heads for PKD, Gift of Life: Give Donors a Break, Teen in Helena, MT,

PKD Research

MiceTimes of Asia

The most useful juice for the kidneys

People who have kidney problems, doctors recommended to drink grapefruit juice.

Of course, if it is not contraindicated to you from other diseases.

Scientists at the University of London, found in the grapefruit a substance that can prevent the formation of cysts in the kidneys.

This substance called naringenin and is also present in other citrus fruits. It successfully blocks the formation of cysts in the kidneys, an effect which occurs when polycystic kidney disease, by regulating the PKD2 protein responsible for this.

This study was published on the eve of world kidney day, celebrated globally on 13 March and aims to raise awareness of the importance of kidneys and the risk factors for the development of kidney disease.

Discovery benefits naringenin can be a vital step forward in the future treatment and prevention of kidney disease, say the study authors.

One of them, Professor Robin Williams said: “this discovery is vital in helping us to understand how to control polycystic kidney disease.

Kidney disease are debilitating condition that can lead to death and finding an effective treatment is really urgent priority of scientists.”

PKD Fundraising

From MuskokaRegion.com, Ontario, Canada

Swimming Lake Muskoka from Gravenhurst to Port Carling for organ donations

Six swimmers taking a 30-kilometre trek from Gravenhurst Wharf to Hanna Park in Port Carling are raising funds and awareness for those living with organ issues.

Camp Kivita, a summer camp in Muskoka for children with organ difficulties/transplants, will receive 100 per cent of the funds raised.

This is the second year the swimmers, three returning swimmers and three new, are taking to the water. They are set to start at 6 a.m. Saturday, July 29, with Sunday, July 30 reserved if the weather is not co-operating. However, it is unlikely they will postpone.

“The only thing that will stop us is a thunderstorm or a gale,” said organizer and swimmer Ricky Jacobs.

Last year they raised more than $10,000 for Camp Kivita, which allowed 10 kids to attend the camp, and an Ontario award of merit for their efforts, which Jacobs’ said was very unexpected.They will be swimming relay style with each swimmer taking 30-minute legs. They anticipate finishing at Hanna Park between 3 and 6 p.m., although their arrival time at the park is a rough guess. Anyone wishing to see them off or welcome them in will be welcome.

Muskoka cottager Paul Jacobs and his battle with polycystic kidney disease was the catalyst for son Ricky to start the inaugural swim. He is on dialysis and near the top of the waiting list for a transplant.

The family has a longtime connection with and passion for Muskoka, which is why Jacobs’ says he wouldn’t hold the swim anywhere else.

In addition to his dad Ricky also swims for longtime friend Gini Buckman.

According to Ricky’s wife Livy, Buckman has Type 1 diabetes and now, at the age of 43, needs a pancreas.

Another swimmer, Wendy Chong, also has a personal connection. Her father is awaiting a heart transplant.

There are so many connections to the swimmers and the need for donors. Swimmer Nick Knezic will be doing the swim for the first time. It was New Year’s Eve when he mentioned he the idea of doing a long-distance swim. It was a perfect fit. Like the Jacobs’ family, Knezic has a connection with Muskoka as a Cache Lake cottager but he also has a link to the need for organ donor awareness. His father Dario died while on dialysis.

There is also a celebrity in their midst. They are joined by former Olympic swimmer Zsofia Balazs. Balazs was the first Canadian woman to compete in the open water 10-km swim. She placed 18th.

A pontoon boat, on loan from Walker’s Point Marina, will transport the swimmers waiting their turn in the water. There will also be a lead boat and a kayak guiding the swimmers.

A number of local businesses have stepped forward to sponsor event and they welcome more as well as people wishing to sponsor the swim for Camp Kivita.

There will be live updates via social media the day of the swim using the hashtag #organdonorswim, on facebook.com/organdonorswim, or visit kidney.ca/organdonorswim for more information.

From Bridport News, United Kingdom, by Rene Gerryts

Laura Lovelace had her head shaved to raise money for the polycystic kidney disease charity PKD in honour of her inspiring mum Sue

HER husband thinks she looks like Sinead O'Connor and loves her new look, her mum just thinks she's amazing and Laura Lovelace herself is just feeling the cold.

But the former Beaminster School pupil is also feeling very grateful to everyone who's made her head shave so worthwhile as she's raised more than £1,200 for the Polycystic kidney disease (PKD) charity.

She decided to go bald for the charity as a way of both paying tribute to her mum Sue Andrews whose kidneys failed necessitating a transplant and to the charity which helped her.

Laura, who now works in Waitrose in Bridport, said: "My mum's suffered with polycystic kidney disease for as long as I can remember.

"This year in March she had a kidney transplant because the disease caused kidney failure.

"While she was going through dialysis and everything that else that happened to her during that time she was really just held our family together and remained positive.

"She was just a real inspiration to me so I just wanted to do something to give back to the charity because without that charity coming up with dialysis and supporting all the research behind and things like that my mum wouldn't be here.

"I was inspired to do the head shave by Jo Harp one of my husband's friends who raised a lot of money. I wanted to do something that raised a lot of money and mum wouldn't let me do a sky dive.

"Donations are still coming in but so far we've raised more than £1,200."

Laura's not unused to different hairstyles but grew her hair long for her wedding last year and having decided on the head shave last December kept it growing it so she could also support the Little Princess Trust by donated her 16inch ponytail.

Apart from feeling the cold Laura's quite keen on her new look and husband Sam said he loves it.

She had the shave at Snip Hair and Beauty on the St Michael's trading estate.

Mum Sue, from Broadwindsor said she offered to do the head shave too.

"But Laura said I'd been through enough. I had peritonitis a couple of times too and almost missed her wedding last year through sepsis but was thankfully discharged from hospital less than 24 hours before she got married. It has been a tough time.

"I was waiting for a transplant for more than five years which is longer than average.

"Unfortunately I went into kidney failure because your kidneys deteriorate over time."

She had the operation at Southmead Hospital in Bristol.

She can be supported at justgiving.com/fundraising/Laura-Lovelace

PKD causes numerous cysts to grow in the kidneys which can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure. It is the fourth leading cause of kidney failure.

Gift of Life

From Chicago Tribune, by Paul Basken, Arthur Caplan

Commentary: Why price heroism? Organ donors can save taxpayers millions. They deserve a break.

At 5 a.m. on the first Friday of April, a perfectly healthy 27-year-old newlywed awoke in a hotel 300 miles from her home and walked into the nearby hospital. There, the modern-day American hero and true Wonder Woman let a team of surgeons cut open her abdomen and take out a vital organ. For the lucky recipient of her right kidney, Brittany Burton's imponderable kindness was an act of lifesaving heroism. And for all her fellow taxpayers, it was a living bequest worth as much as a million dollars.

One of us was the beneficiary of both of those gifts. Both of us badly wish that many more people in dire need could find themselves in the same happy position. And yet — largely because so many Americans don't realize the beneficence shown to them by heroines like Brittany that early spring day — many of those in need probably will die instead.

The math is pretty simple.

For those suffering kidney failure — from inherited conditions or other diseases — the only option for survival other than a transplant is dialysis. That means a laborious and time-consuming mechanical filtering of the blood — usually for many hours, three times a week — to replace the job done by the kidneys. This costs about $90,000 a year and rising. Most of that bill is covered by government insurance through Medicare.

The average five-year survival rate on dialysis is about 35 percent. Otherwise healthy people with an inherited condition such as polycystic kidney disease can fare better. People do find suitable donors after many years on dialysis, but it's not a realistic permanent solution for anyone. Those who survive lengthy periods on dialysis miss lots of work and family life and incur other costs — it's not hard to see that one dialysis patient can cost U.S. taxpayers $1 million or more.

Brittany spent months going through batteries of tests, suffering distractions during her honeymoon to avoid Zika and any other disqualifying bugs, getting holes poked in her arms, and finally undergoing major elective surgery, with no thought of getting any financial reward.

She can't truly explain her generosity. The closest she can manage is to point out a TED talk in which a Georgetown University professor tries to describe that rare breed of person who looks out at the world and doesn't see any one life — including people she has never met on the other side of the planet — as being any less valuable than her own.

For such a person, it simply seems illogical not to give up one kidney to save a fellow human traveler when science says that one remaining kidney is almost always enough to survive a full life.

One major problem for those dying of kidney disease is that not everybody thinks that way. But a second, and far more solvable problem, centers on the fact that Brittany didn't just donate for free. Instead, the government took her altruistic lifesaving donation as an opportunity to make money.

The big medical bills began arriving right after Brittany's beautiful kidney was tucked inside her recipient. Fortunately that recipient has pretty good insurance through his employer, and the out-of-pocket hospital and drug costs were pretty manageable.

The biggest expense, as it turns out, concerns the government. By law, Brittany cannot be paid a dime of compensation for the gift of her kidney. But markets in organs aside, shouldn't heroes be reimbursed for legitimate expenses? These amounted to maybe a few thousand dollars for trips by her and her husband to testing appointments around their home in North Carolina, and to the Baltimore hospital where she underwent additional tests and the transplant surgery.

Even more costly is Medicare. Although some kidney donors don't need any added coverage, some sign up for the government-run health plan — at $3,000 a year — because it is the only way to guarantee coverage in case they have complications related to the donation surgery. Brittany had her own private coverage through her job as a high-school counselor. But having submitted to a "voluntary" medical procedure, she could not expect private insurance to foot the bill in the rare event of a complication.

So the bottom line is that Brittany saved taxpayers hundreds of thousands of dollars a year, and in return the government's "thank you" note is a Medicare bill of $3,000 a year.

Even worse, Medicare only allows that coverage for 36 months, meaning that a hero like Brittany is on her own if she experiences some problem related to her donation after three years. It's a massive disincentive for any well-meaning person who wants to save a life and help cut government spending.

Our government's current ban on any kind of payments, other than the reimbursement of immediately obvious costs such as Brittany's airfare to Baltimore, simply goes too far. Heroes should not have to go broke as the price of their generosity.

Right now, about 100,000 Americans need a kidney. More than 4,000 Americans die every year while waiting for a transplant. There are fewer than 20,000 donor kidneys available for them each year. Transplants increase average survival rates more than tenfold.

If finding a living donor for a kidney patient can save the government tens of thousands of dollars a year, why not allow a small share of that amount to offer the altruistic some help to cover their costs of medical tests and future health insurance?

Brittany's not asking to be paid, and we aren't either. But saving lives and saving money, by encouraging more people to be like her, just seems a matter of common sense and common decency.

Paul Basken is a kidney transplant recipient and a staff writer at The Chronicle of Higher Education . Dr. Arthur Caplan is head of the Division of Bioethics at New York University School of Medicine.

From Independent Record, Helena, MT, by MATT NEUMAN

Helena teen receives life-saving kidney transplant from family friend

On the second floor of a Primary Children’s hospital in Salt Lake City, doctors wheeled Ashley Lindgren, 19, into the operating room just after 1 p.m., Tuesday, June 20. She was about to get another chance at a normal life.

For the last 10 months, Ashley had undergone near daily dialysis, the exhausting process of removing her blood, filtering it, and returning it to her body.

In early August 2016, Ashley’s single functioning kidney flipped over, twisting the arteries connecting to it, cutting off the flow of blood. She was life-flighted to Salt Lake City, where she underwent emergency surgery to try and save it.

The surgery failed.

Ashley had just graduated from Capital High and was set to begin studying theatrer in Missoula at the University of Montana that fall. She was in the midst of performing in Montana Shakespeare Company’s rendition of “King Lear” when all her plans suddenly came to a halt.

“I lost all of it overnight. All of my plans for the future, all of the people I left behind in Helena, it just all fell apart.”

For 10 months, Ashley’s life revolved not around gaining her education, hanging out with friends or pursuing her passions. It was centered around early morning dialysis, a process that after three hours of filtration, left her so worn out that she slept until 3 p.m. most days. But this summer, Ashley received a glimmer of hope.

Ashley first met Ryan O’Connell at her uncle Jay’s wedding. She was only a toddler, and he was a groomsman.

Ashley had been diagnosed at 6 months old with autosomal recessive polycystic kidney disease, a disease that leads to the growth of cysts on, and eventual failure of, the kidneys.

O’Connell, a friend of the family for about 30 years, said he knew she had kidney problems as a child, but had not heard much about it in years. He came across a GoFund.mepage created for Ashley’s family last September, learned her kidney had failed, and needed a transplant.

“I had just lost my job at New West Health when they closed down. And something just told me I was in the right place in my life to do something that really made a difference. Once we got the process started, I just knew it was going to happen.”

A dancer, golfer and actress at Capital High, Ashley was an outgoing, model student.

Ashley had her first transplant at age 14. Her mother, Tammy Lindgren, was a match and successfully donated one of her kidneys to Ashley. Doctors think that because Ashley was still young at the time, space was made as she grew, and her mother’s donated kidney moved around, and ended up flipping over and failing last year.

Her father, David Lindgren, did not have the same blood type, so could not donate to Ashley. He enrolled in a crossmatch program, where he would donate to someone who he matched in exchange for receiving a donation from someone who matched with Ashley. Unfortunately, the crossmatch never materialized.

In February, O’Connell started the process of becoming a donor for Ashley. He was a match, and passed the extensive exams, questionnaires and interviews.

His family was hesitant at first. O’Connell has two teenage boys of his own, and said his family was concerned about him volunteering to go under the knife.

“They were supportive once we did the research about how safe this process is. I think they also came on board once they saw my passion for doing this.”

On June 19, O’Connell, his girlfriend and sons caravanned with his parents down to Salt Lake City. That night, the night before the transplant surgery, the O’Connells and Lindgrens picked up dinner to-go from Ashley’s favorite restaurant, Olive Garden, and headed back to the hotel to eat.

“They don’t have one in Helena, so it’s really a treat for me. Chicken fettuccine alfredo. You just can’t beat that,” he said.

Ashley said the dinner conversation wasn’t overly emotional, even though it was the culmination of so much struggle and pain.

“The word ‘surreal’ kept coming up,” O’Connell said. “Even now, just thinking we did that, you know the conversation just stops.”

On Tuesday morning, O’Connell went into Utah University Hospital, on the same campus as Primary Children’s. The surgery took less than three hours. O’Connell said he heard some voices as he slipped under the anesthesia, and woke up to his family waiting for him.

Later that night, he found out that Ashley’s surgery was a success.

By 7 p.m., Ashley said she could feel her new kidney working. After almost a year of constant tiredness, she felt alert and focused, even after a four-hour-long surgery.

“I could finally take it all in, like everything had been blurry for so long.”

The surgery left her with 19 staples and a crescent-shaped scar on the left side of her abdomen. She calls it her moon scar.

Ashley will be in and out of Salt Lake City until July 25 for follow-up tests to make sure everything is working properly. After that, she will finally pick up where she left off a year ago, and will be off to the University of Montana for a theater degree.

O’Connell said he never could have imagined the feeling of self-satisfaction he got after the surgery. He asked others to keep the Lindgrens in their thoughts while Ashley heals, and to keep an eye out for all she will be able to accomplish now.

“I’m really just a guy with an extra kidney. Ashley and the Lindgrens are the true heroes with what she has been through. I’d really like to raise the awareness of being an organ donor. Not everyone can donate a kidney or a lung or whatever, but if it is something you are able to do, there are options out there to help offset some of the costs. I would just hope everyone can find something that brings them this level of deep satisfaction that I have.”

PKD Research: Epigentic regulator of cyst growth; Kidney Transplant: Using Sub-Optimal Kidneys, Robotic Surgery, Living Kidney Donors Needed

PKD Research

From Nature.com, by Andrea Aguilar
SMYD2 is a novel epigenetic regulator of cyst growth

Autosomal dominant polycystic kidney disease (ADPKD), which is caused by mutations in PKD1 and PKD2, is the most common inherited kidney disease, but no FDA-approved treatment currently exists. In a new study, Xiaogang Li and colleagues report that the methyltransferase SMYD2 is an epigenetic regulator of cyst growth in ADPKD. [To read more requires article purchase]




Kidney Transplant News

From Philly.com, by Dennis Thompson

Are Doctors Discarding Donor Kidneys That Could Save Lives?

U.S. doctors are discarding donated kidneys that could keep people alive for years, simply because the organs are not top-quality, a new study claims.

"Suboptimal" kidneys from older donors with health problems perform much better than expected, and would preserve a patient's life much longer than dialysis, said lead researcher Dr. Sumit Mohan, an assistant professor at Columbia University's Mailman School of Public Health.

About 73 percent of lower-quality kidneys received by Columbia patients were still functioning five years after transplant, Mohan and his colleagues found.

"To our surprise, yes, they did worse than the best-quality kidneys, but they didn't do that poorly," Mohan said.

By comparison, the five-year survival rate for kidney patients on dialysis is about 35 percent, Mohan said.

"If I don't get a kidney, my alternative is to stay on dialysis," Mohan said. "Even getting a suboptimal kidney provides a huge survival advantage."

Unfortunately, about 1 in 5 donated kidneys winds up in a trash can in the United States, Mohan said, even though the United Network for Organ Sharing shows more than 97,000 people are now on the waiting list for a kidney transplant.

These kidneys are discarded because biopsies of donated organs reveal scarring or other problems that make them less than ideal, Mohan said.

When is a donor kidney good enough?

Some low-quality kidneys are rightfully discarded, Mohan said, but he suspected that many donor kidneys could still provide years of good function.

To test this idea, Mohan and his team reviewed 975 kidney transplants that occurred at Columbia University Medical Center between 2005 and 2009.

Kidneys from living donors provided the best outcome for patients, with 91 percent still working five years after transplant regardless of whether the organ was damaged, the researchers found.

Living donors undergo intense screening to make sure they are healthy enough to donate a kidney, Mohan explained. In addition, kidneys from living donors are not damaged during organ preservation and transport.

"You should take a living donor kidney regardless of anything else you know about that living donor," Mohan said. "It's always going to be better than a deceased donor kidney."

But high-quality kidneys from deceased donors functioned well, with nearly 82 percent still working after five years, the researchers found.

Surprisingly, most lower-quality kidneys also remained viable for nearly as long as the best kidneys, with 73 percent still working five years after transplant, the study showed.

By eight years after transplant, 62 percent of optimal kidneys and 53 percent of suboptimal kidneys from deceased donors still functioned, Mohan said.

The findings were published online July 6 in the Journal of the American Society of Nephrology.

Are biopsies the best way to decide?

The problem?

Doctors rely too heavily on biopsies in judging whether they will accept a kidney for transplant, said Mohan and Dr. Richard Formica, director of transplant medicine at the Yale School of Medicine.

Biopsies of donated kidneys are often reviewed by pathologists who are not kidney experts, Mohan and Formica explained. These general pathologists are not as capable as specialists of performing a nuanced review of each organ's quality.

In addition, biopsy results can vary depending on where the tissue sample is taken from the kidney, and might not accurately reflect the overall quality of the kidney, Formica added.

Finally, many biopsy samples are frozen, and the freezing process can distort what a pathologist sees under the microscope, Formica said.

"I don't think the way we do biopsies currently in assessing whether or not organs get transplanted gives the clinicians the ability to make an informed decision," Formica said. "That's the problem with biopsy."

Mohan and Formica couldn't say whether the problem extends to other donated organs, such as hearts or livers.

Doctors might be choosier regarding kidneys because patients can be kept alive through dialysis, whereas a person needing a new heart or liver will die without the donation, Formica said.

Lower the bar to save more lives?

"People don't realize if I turn down a kidney that's coming for somebody, it's not that that person is going to sit on the waiting list forever just waiting for the perfect kidney," Mohan said. "There's a significant possibility they're going to die before the next kidney shows up, because the mortality rate on dialysis is so high."

Mohan believes that transplant doctors should rely more heavily on a donor's medical records to decide whether a kidney is viable, and use biopsies solely to help evaluate truly questionable donations.

"If you know age of the donor, the gender, the race, the clinical history, you pretty much already can guess 9 times out of 10 what the biopsy is going to show you," Mohan said. "Looking at a bad biopsy shouldn't sway you further away from using that kidney."

The U.S. organ donation system also should consider changing the way it distributes donated kidneys, to provide people further down the waiting list the option of taking a less-than-perfect kidney if it suits them, said Formica, secretary of the American Society of Transplantation.

"If you're 65 or 70 years old, waiting six years for a kidney isn't really an option," Formica said. "You're either dead or you're not going to have any more fun in your retirement. However, if you could get a kidney that was not perfect but was good enough, if you could get that kidney in two years and then get to take that Danube River cruise you always wanted. That's not a bad trade."

More information

For more on transplant trends, visit the United Network for Organ Sharing.

From The Indian Express, Mumbai

Robotic kidney transplant surgery done successfully in Mumbai hospital

Unlike regular kidney transplantation where the patient receives the kidney through a larger muscle cutting process, robotic surgery is conducted with only a small incision and involves no cutting of muscle.

MAHARASHTRA became the third state in the country to record a successful robotic kidney transplant after Gujarat and New Delhi. The kidney transplant surgery, conducted on July 2 at HN Reliance Foundation Hospital and Research Centre, (HNRF), Mumbai, saw a woman donating a kidney to her husband. Unlike regular kidney transplantation where the patient receives the kidney through a larger muscle cutting process, robotic surgery is conducted with only a small incision and involves no cutting of muscle. The Da Vinci robot is used in a specific way to ensure tremor free movement of the instrument thus causing no damage to the graft kidney. This ensures minimal chances of infection and faster recovery of the patient and the donor.

Andheri resident Leena Murlidharan (55) donated the organ to her husband C N Murlidharan (59) after he was admitted to the hospital with renal failure. “The family was apprised about the latest robotic technology and its benefits, including lesser risk of infection, lesser pain, and a faster return to normalcy. Higher magnification and finer scaled movement of robotic instruments ensured greater precision in this act,” said Shruti Tapiawalla, consultant at HNRF.

Doctors said that the particular robot has been in use previously for other surgeries but was used for the first time for a transplant. A team of doctors led by Dr Inderbir Gill, Head of Department, Urology and Robotics, HNRF, and MD, Distinguished Professor and Chair, USC Institute of Urology, University of Southern California conducted the surgery. “The cost of this transplant is not much higher than a regular transplant process which is worth Rs 5-6 lakhs,” Tapiawala added.

“It has been a privilege to perform Mumbai’s first robotic kidney transplant at the hospital considering it is the first of its kind in Maharashtra. The team worked together and we are thrilled the patient and the donor are doing well and the operation was a great success,” Gill said.

Gill added that robotic surgery allows kidney transplantation to be performed with great precision, minimal blood loss, and lesser chance of post-operative infection. “This is an advanced procedure performed in very few centers in the world,” he added.

Murlidharan had been on dialysis for the past one-and-a-half years. He said, “The robotic surgery involved much lesser pain. I was initially reluctant, but the doctors convinced me about the benefits. I am happy that I went ahead with it.” Narrating her experience, Leena said, “I decided to give my kidney for my husband’s normal life,” who added that she did her own research about the surgery before going ahead with it.

Patients suffering from chronic renal diseases tend to prefer renal replacement compared to dialysis for various reasons. Only three centers in India including Mumbai have performed these transplants as of now.

Living with PKD

From TurnTo10, NBC Affiliate, Providence, RI, by BARBARA MORSE SILVA

Living kidney donors needed, advocates say

The wait for a kidney in New England from a deceased donor is four to five years, and the expected lifespan is almost half that of a kidney from a living donor.

That’s why a nurse from Lifespan is hoping to raise awareness, hoping to get a retired Providence firefighter a living donor soon.

"It's been difficult for him because he's the type of guy who's always a go, go, go person,” said Nancy Thibault of her husband of 11 years, Raymond.

Raymond said he found out he had an inherited form of kidney disease, polycystic kidney disease, when he was in his 20s. His mother had it too.

"I just kind of put it off. It didn't really bother me until two years ago," he said.

That's when his health started going downhill.

"A lot of fatigue, I was getting tired, nauseous," he recalled.

Raymond’s kidneys were failing and for more than a year now, he has been on dialysis three days a week, every week, for about four hours a day.

His 10-year-old son, Ray, explained how dialysis works: "It's like a machine that the blood goes through and filters his blood because his kidney doesn't work."

About six months ago while talking about the importance of living kidney donations, the Thibaults met Sheila Drew, a nurse at Lifespan. Five years earlier, she had donated a kidney to a Coventry woman.

“ I said, 'Well, I work at a hospital. We have a transplant center. Somebody must need my kidney,'" she recalled.

That was after she tried to donate one of her kidneys to a little Massachusetts girl in need but a better match was found. Drew then offered to donate to someone in need in Rhode Island. That person turned out to be Carol Ryan of Coventry in August 2012. They met in the hospital just days after the operation.

"And the two of us just looked at each other and there was a flood of tears,” said Drew. “I didn't know the woman from anywhere but I knew we're sharing body parts."

Since that time, Drew and Ryan have been good friends. And Drew has become a zealot about others becoming living donors.

"Sheila's an amazing person and actually it inspired us there's actually people out there that are willing to donate and it's sort of given us a little bit of hope," said Nancy Thibault.

So, the Thibault family hopes and Drew continues to preach.

"Wherever I can I tell my story," said Drew.

To qualify as a living donor, you must be at least 18 years old and in excellent health. Recovery can last up to three months. Drew said she bounced back much sooner than that. She has lunch often with the women she now refers to affectionately as "Kidney Carol."

PKD Dialysis 10x Faster with Graphene Membrane, PKD Walk: Boston; Memphis Toddler Needs Kidney; Help Homer Glen Woman; Transplant Games Athlete

Dialysis Research

From Institution of Mechanical Engineers, by Joseph Flaig

New graphene dialysis membrane could be 'amazing' for seriously ill patients

A new filtering process using the versatile 2D material graphene could have “amazing” possibilities for people with serious diseases, an expert has said.

Engineers at MIT have made a functional dialysis membrane from a sheet of the material, a single layer of carbon atoms linked together in a hexagonal lattice. The dialysis process filters molecules out of a solution, such as removing waste products from the blood of patients with kidney disease.

The graphene dialysis membrane is much thinner than existing examples, which are normally made of cellulose or synthetic polymers, with a thickness of 1nm compared to the previous thinnest 20nm. As a result, the graphene can filter molecules out of solutions 10 times faster, said the MIT department of mechanical engineering team led by Piran Kidambi.

The increased efficiency could “make a serious difference to patients, particularly those who are suffering from blood illnesses or kidney disease,” said Helen Meese, head of healthcare at the Institution of Mechanical Engineers. “Going into hospital for long periods of time can be time-consuming and painful, and can affect people quite severely if they are having to go two or three times a week for dialysis.”

Quicker filtering and increased portability with graphene membranes could let patients stay at home or visit their GP surgery rather than hospital, she added, saving costs and possibly helping patients recover faster.

The new membrane could have many other uses, said the MIT team, including purifying drugs for pharmaceutical companies and isolating molecules during medical diagnosis of patients. Current membranes work slowly because they are relatively thick, the engineers said, with molecules travelling through “winding paths” to the diluted solution.

“Because graphene is so thin, diffusion across it will be extremely fast,” Kidambi said. “A molecule doesn’t have to do this tedious job of going through all these tortuous pores in a thick membrane before exiting the other side. Moving graphene into this regime of biological separation is very exciting.”

The team filtered a variety of molecules with diameters between 0.66nm and 4nm out of solutions with their 1cm² membrane. The graphene was customised to “selectively sieve” the molecules, with oxygen plasma used to make holes of different sizes.

The engineers plan to make the membrane bigger, and to create more “tailored” pores to allow more molecules through, something which would cause problems for the super-strong, thin and conductive material in other applications.

“What’s exciting is, what’s not great for the electronics field is actually perfect in this field,” Kidambi said. “In electronics, you want to minimize defects. Here you want to make defects of the right size.”

The study was published in Advanced Materials.



PKD Walk

From WCVB ABC Affiliate Boston, MA

Kathy Curran to Emcee the Boston Walk for PKD on Saturday, September, 30th

Location:
Artesani Park
1255 Soldier's Field Road
Brighton, MA 02135


Event Information:
Check-in/Onsite Registration: 9 a.m.
Penny Kids Dash: 10 a.m.
Walk Begins: 10:30 a.m.
Walk Distance: 2.8 miles

Polycystic kidney disease (PKD) — one of the most common, life-threatening genetic diseases — strikes both adults and children. It often leads to the need for dialysis and a kidney transplant. It affects thousands in America and millions worldwide, who are in urgent need of treatments and a cure.

Come join the many walkers who are devoted to supporting PKD research and creating better lives for those who have been impacted by PKD.

Please unite to fight PKD. Join the PKD Foundation in Brighton and support the 2017 Walk for PKD today!



Living With PKD

From WMC NBC Affiliate, Memphis, TN

Mid-South family needs help as baby awaits kidney transplant

A baby born last year in Memphis needs your help.

Elena Liriano needs a kidney transplant. She's the daughter of Suzanne Taylor and Leonidas Liriano, and she was diagnosed with Polycystic Kidney Disease.

Doctors at Le Bonheur Children's Hospital said Elena needs the kidney transplant in order to survive.

"Her kidneys weren't functioning," her mother Suzanne Taylor Liriano said.

Within the first week of the little girl's life, she was on a path to dialysis. But now, she needs a transplant to survive.

The cost of a transplant often exceeds $500,000, so the Children's Organ Transplant Association (COTA) is stepping in to raise money to help pay for Elena's procedure.

"We have copays of course, and all the expenses of taking the time off work for the transplant and other hospitalization associated costs," Liriano said.

The family is planning to have the transplant next year once Elena reaches a safe weight of 22 pounds for the surgery.

"The great thing about CODA is that 100 percent of the proceeds go for Elena for her whole life. So, she needs a kidney transplant at age two, she will likely need more than one in her life to have a full life," Liriano said.

Volunteers are needed to help with the fundraising activities. Individuals or groups interested in helping COTA can contact Lia Savino at 901-481-4989 or liajofisher@mail.com.

If you wish to donate to the cause you may mail your donation to Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403; write a check or money order that's made payable to COTA, with “In Honor of Elena L” written on the memo line of the check; or you may donate online at this link.

From Homer Glen Patch, Illinois, By Andrea Earnest

Homer Glen Woman Battles Kidney Disease

Christine Hare, of Homer Glen, was first diagnosed with polycystic kidney disease in 2007, after a hospitalization to remove her appendix. During this hospitalization, a CAT scan showed that Hare's kidneys were full of cysts. She almost died during her surgery.

"I woke up in cardiac ICU at Good Samaritan Downers Grove the next morning," Hare said. "Every doctor and nurse said I should not have been alive and no one could figure out how I pulled through."

Hare said during her surgery, fluids backed up to her heart, causing her to nearly die.

"I never had health problems before this," Hare said. She described polycystic kidney disease as a "silent disease." She inherited it from her mother and grandfather.

After she got out of the hospital, Hare started seeing a nephrologist, a kidney specialist, every six months for blood work, and she changed her eating and exercise habits.

In January 2015, Hare's condition worsened when she received some blood work that had her nephrologist suggest peritoneal dialysis. She had surgery to place a catheter inside her abdomen in March 2015, and soon after began 10-12 hours of dialysis every night.

"Sometimes it's very painful, but it's keeping me alive," Hare said.

Hare has a GoFundMe Page set up by one of her co-workers to help with the costs of her various medical expenses.

"I still ask everyone to please share and find it in their heart to donate," Hare said. "My family needs help now more than ever." Hare's medical expenses have escalated, and she also receives peritoneal dialysis supplies.

"I receive 50 boxes a month of IV bags that help me survive," Hare said. "I do dialysis every night for 12 hours."

Hare continues to work part-time during the day at Charter Fitness of Homer Glen. Hare and her husband both work to support their family.

"Sometimes it's a toss up of 'do you pay this bill or put food on the table?'," Hare said. "There's days I feel nauseous and extremely tired, but I have to work to pay the bills."

According to her GoFundMe, Hare is now in end stage renal disease, but has hopes of finding a kidney donor to help improve the quality of her life.


"I love my family and I want to be here to see my kids grow up," she said.

Visit Hare's GoFund Me here.

From Ventura County Star, CA, by Tom Kisken


After kidney transplant and liver problems, Venturan competes in Transplant Games


There's a reason Tom Henry can't talk about Wayne Huss without crying.

If it wasn't for Huss, Henry wouldn't be talking about setting track and field records in the World Transplant Games this week in Malaga, Spain.

The 60-year-old athlete from Ventura wouldn't be alive.

When Henry was a senior in high school, polycystic kidney disease killed his father. Eventually, it ended the lives of his sister and his half-sister.

Henry survived the disease that shuts down kidney function because Wayne Huss died on March 17, 1994, at age 27. He was killed in a traffic collision that Henry said involved an impaired driver. Less than two days later, one of his kidneys was transplanted into Henry at UCLA Medical Center.

It was a gift that brought more gifts. A year after the transplant, Henry's son was born. Henry competed in a litany of national and world competitions for transplant recipients, winning dozens of medals. A 2006 TransWorld journal article speculated he could be one of the world's most honored transplant athletes.

It's because of Huss, said Hickey, who talked to the man's father after years of trying to find his donor.

"It was a hard conversation," he said, tears causing him to stop and start again. "I'm telling this man ... thanking him for saving my life and realize at the same time he lost his son. ... It's really hard. It's been 23 years and I can't get through talking about it."

Henry, once a computer forensics specialist, left Ventura Friday for the Malaga World Transplant Games, his first such competition in seven years. The opening ceremonies for the biennial event involving more than 2,000 athletes who have gained hearts, lungs, livers and kidneys came on Sunday.

Henry's games begin Thursday.

His 40-year-old daughter, Amanda Heinritz, made the journey with him. She'll watch as he competes with other 60-somethings in the 50-meter freestyle swim, shot put, javelin throw, discus and the cricket ball throw.

"I'm breaking all four of the world records," he said of the track-and-field events in an interview at his East Ventura home, decorated with a Kobe Bryant framed jersey and a NordicFlex exercise machine.

The pledge may sound extreme, but Henry won at least three gold medals at his first Transplant Games America and never really stopped winning over the next two decades.

Once a high school track and field standout and then a semi-professional football player, he holds the World Transplant Games record in the shot put and the ball throw in records verified by the World Transplant Games Federation.

In practice sessions leading up to the Malaga games, Henry said, he routinely bested the current records for his age group.

There's another reason not to take Henry's claims lightly, said his friend, Dennis Crandall, of Oxnard.

"Tom is the most competitive person I've ever met," Crandall said. "He takes everything in life and he takes it to the hilt. He just goes after it. ... It could be cards or tossing a Ping-Pong ball in a cup, it's a competition. Game's on."

Henry competed in every Transplant Games of America from 1994 to 2010. Then his liver started to grow. He was diagnosed with polycystic liver disease, a condition related to his kidney problems. He said cysts caused his liver to grow abnormally, bringing circulation problems and making simple movements painful.

He couldn't compete. He stopped going to the Transplant Games.

"I didn't think I was ever going to compete in sports again," he said.

Henry went through surgery three years ago to reduce the size of his liver. Eventually, he started to feel like himself again. Competitive juices surged.

He decided retirement was premature. He started riding his bike again and working out. He made plans for the Malaga Games in a journey that will cost him about $4,000.

He's doing it because he can, because he's a transplant recipient who doesn't know how long his health will hold up. It's a life where nothing can be taken for granted.

"I'm celebrating a gift that was given to me," he said, urging people to become organ donors. "The way I celebrate it is to go out and compete with athletes who all have had transplants, spreading the word that we're all, you know, back to normal. We're healthy."

After the games, Henry plans to move to Utah to be closer to his two daughters and his grandchildren. Salt Lake City is also the home of 2018 Transplant Games of America. He'll likely compete again.

"I know he's going to compete," Crandall said. "He's the type of person who always has to be doing things... He just has that competitive spirit. Everything is a challenge."