Transplant Crisis on BBC; Travel to Transplant; Rachel's Kids Donations; Donate Life Challenge; 30 years with a donated kidney

Gift of Life

From Scottish Sunday Express, By PAULA MURRAY

Donate the greatest gift to save a life

A FAMILY struck by genetic kidney condition have spoken out to highlight the crisis in Scotland’s organ transplant system.

Gary and Susan Robertson and their two sons feature in a heartbreaking new BBC documentary as they embark on the emotional rollercoaster ride of finding a suitable donor.

Gary is one of around 70,000 people in the UK with polycystic kidney disease, a life threatening, inherited illness which also affected his mother and grandfather.

Although he has known about the condition since he was 18 it wasn’t until around his 40th birthday five years ago that his health started to deteriorate.

However, neither he nor wife Susan, 42, had expected him to fall ill so young when the previous two generations had reached the age of 61 before needing a transplant.

The father-of-two was so desperately unwell the family’s life was literally put on hold.

Susan said she signed up as a living donor without his knowledge but after seven months of tests was told they were not compatible.

However, they singed up for a transplant chain and found matches involving two other couples and three hospitals in total.

She told the Sunday Express: “I was losing him. He became so quiet, he just was not the same man anymore.

“We knew the day would come when he needed a transplant but we had always believed he’d be more like his mother and grandfather and in his 60s before that happened.

“But that’s not how it worked for us.

“He went downhill rapidly.”

The couple, from Currie, near Edinburgh, kept their children, 13-year-old Murray and Sean, 10, in the picture from the start.

With hospital trips to dialysis sessions scheduled three times a week the boys became a huge part of the process.

Although they both have a 50 per cent chance of having the same condition as their father Susan and Gary will not have them tested as "there is nothing that can be done about it".

Gary's journey to better health has not been easy. He needed a pre-transplant operation after the surgeon found swelling in his kidneys caused by bursting cysts.

The, just 48 hours before the main surgery was due to go ahead, Susan developed a cold and the procedure was put on hold.

However, eventually three people with life-threatening illnesses were given a new lease of life last year.

Looking back at the "emotional rollercoaster ride" Susan said it had actually been a relief for Gary that she was not the perfect match for him.

The mother-of-two recalled: “Gary admitted he had been concerned that he might reject the kidney. He said he would have felt as if he was rejecting me and did not know how he could have coped with it.”

Last year 425 people in Scotland received an organ while around 550 remain on the transplant waiting list. [Read more]

From Forbes, by Peter Ubel

Your New Liver Is Only A Learjet Away: Part 2 Of 3

Irena Bucci was receiving follow-up care after delivering her second baby when the obstetrician discovered a problem with her kidneys. “My creatinine was rising,” creatinine being a waste product normally cleared out of the bloodstream by healthy kidneys, “and my doctor didn’t know why. I didn’t have high blood pressure or diabetes,” two diseases that are common causes of kidney failure. Bucci met with a number of kidney specialists, in hopes of uncovering the cause of her kidney failure. “But the tests didn’t discover one. And without a diagnosis, they couldn’t figure out how to treat my illness. They told me it was just a matter of time before my kidneys failed.”

In the absence of a transplant, kidney failure is usually treated by dialysis. With this treatment, patients no longer face imminent death. Prior to the emergence of dialysis, people with irreversible kidney failure usually died in a matter of weeks. On dialysis, many patients live for years. But they do not necessarily live in great health. The medical literature estimates that patients on dialysis face annual mortality rates close to 20%. Bucci desperately wanted to avoid that fate. “My doctor urged me to find a living donor, and get transplanted before I needed dialysis. A few even told me that since I am from Russia, I should go abroad and find someone willing to ‘donate’ a kidney.”

But Bucci was not comfortable receiving a kidney from a stranger—that struck her as both unethical and as medically dangerous: “Who knows what kind of organ you would get that way.” She also didn’t have any relatives who could serve as living donors. So she settled in for the long wait to receive a transplant from a deceased donor. At Georgetown University Medical Center, near where she lived, less than a quarter of their kidney transplant candidates receive a transplant in a typical year. Bucci knew that each one of those years she spent waiting for a transplant could be her last.

And then she read Walter Isaacson’s biography of Steve Jobs, and learned that he had flown to Tennessee to receive a liver transplant, and thought to herself: “Why don’t I do something like that!” She decided to get herself listed at as many transplant centers as possible, and travel to which ever one could find her a suitable organ.

Bucci began undergoing transplant evaluations at hospitals located relatively close to Washington D.C., but that operated in different transplant areas than Georgetown. In the process of undergoing those evaluations, she received some bad news that made it even more important for her to get listed at multiple centers – she had a PRA of 90. The PRA, or Panel Reactive Antibody test, estimates the percent of potential donor kidneys that a person’s immune system will reject. Probably as a result of her pregnancies, Bucci’s immune system was highly reactive; her body was choosy about what kind of foreign antigens it would tolerate. Whatever the reason for her high PRA, Bucci would be unable to accept 90% of eligible donors. As an IT expert with a Master’s degree in mathematics, it was not difficult for Bucci to figure out that her long wait for a kidney had just gotten longer.

That’s when Bucci began spending her free time getting herself onto as many transplant waitlists as possible. She researched hospitals in the Northeastern United States and made appointments at transplant centers with relatively short wait times. She stretched beyond the Northeast, even getting herself listed at two programs in Florida. And not surprisingly, she connected with Sridhar Tayur, the CEO of OrganJet, a company that helps patients receive distant transplants to reduce their waiting time for an organ. (See Part 1 for the origins of this company.) Tayur convinced her to add the University of Pittsburgh to her list of centers. She travelled to all those programs outside of work hours, because she did not want her employer to realize she had kidney failure. She was already noticing that her illness affected her concentration, and she did not want to give her boss a reason to relieve her of her job: “I didn’t want to hit them over the head with my illness,” she told me. “They weren’t going to learn about my kidney problems until I left work to get a transplant.”

From Seaway News, Cornwall, Ontario, By Adam Brazeau

Rachel's Kids' biggest 'Small Moments of Joy' donation yet

CORNWALL, Ontario - His battle with Polycystic kidney disease is no fairy tale story.

So before six-year-old George Jacobs and his family tour Disneyland thanks to a Cornwall-based charity, they're making a pit stop to meet his favourite silver screen star: Emmet from the Lego Movie.

For over two years, the youngster needed daily care at CHEO in Ottawa while on dialysis as he waited for a transplant. PKD, the inherited condition that affects kidney function, has no known cure.

In 2013, George’s long wait was over: a donor surfaced.

"He's been a lot better since then," said Mitchell.

During the long hospital visits he found strength in dreaming that one day he would meet the fictional character and visit the popular California attraction.

Enter Rachel's Kids' 'Small Moments of Joy' program.

The charity founded by Dr. Rachel Navaneelan has coordinated with an American foundation to help send the Akwesasne family of four to Disneyland, and several other large amusement parks along the way, including Universal Studios Hollywood, SeaWorld, Legoland Hotel, and Busch Gardens.

Tickets, travel expenses, food, and accommodations are all taken care of.

George (III) will be making the two-day trek with George (Junior) Jacobs (dad), Sabrina Mitchell (mom), and Kayden Jacobs, 11, (big sis'). They leave on Thursday (July 2) and plan to return on July 13.

“The kids are getting really excited,” said Mitchell. “I just want to say thanks for everything Rachel’s Kids has done.”

As a patient of Dr. Navaneelan's, she would discuss George's condition. When his immune system strengthened, allowing him to travel, the Rachel's Kids board of directors decided to "make his wish come true."

George's father noted that this is the family's most extravagant adventure to date.

Watching her brother fight back from having 20 per cent kidney function to his current state of a rambunctious boy has been “very emotional. [Read more]

From The Langley Times, British Columbia, Canada, by Gary Ahuja

Healthy McBeth readies for GranFondo

Roy McBeth (above, right) was the recipient of a new kidney from his boss, Kevin Wright (left). McBeth won the Prospera Valley GranFondo Fortius Changing Gears contest and has spent the past few months (photo below) preparing for the 160-km GranFondo ride. The fourth annual ride begins and ends in Fort Langley on July 19.

While cycling 160 kilometres in less than five hours is an above-average time, Roy McBeth has his mind set on bettering his 2014 mark.

Competing in the Prospera Valley GranFondo for the first time in 2014, McBeth finished the grueling ride in 4:53:38, which was good for 43rd in the men's 35 to 44-year-old age group.

It was also 43 minutes better than the average time (5:36.58) of all 502 participants for that distance.

"I was not feeling very good, but I had made it," McBeth said.

"I don't think I was slow by any means, but I would like to improve on that."

What makes his 2014 time even more impressive was the fact McBeth did so with a kidney functioning in the 15 to 17 per cent range, by his estimation.

McBeth, who is now 45, has cycled for the past 20 or so years, competing in mountain biking, road racing, cyclocross, triathlons and Xterra, which is off-road triathlon events.

But he always did so while struggling with a hereditary genetic condition called polycystic kidney disease (KPD).

It is a disorder that causes multiple cysts to form in the kidneys.

McBeth's grandmother died of the condition in her late 30s while his dad passed away in 2010 at the age of 63.

McBeth was diagnosed as a teenager.

"There is not a lot you can do for the disease," he explained.

"The best options are to live a healthy lifestyle, watch your diet and don't drink excess alcohol, that sort of stuff.

"I knew it was coming. It was more trying to get out in front of what the end game was from what I had seen from other family members and knew that I didn't want to go that route with the years of dialysis, kind of wasting away in that manner."

"I didn't start to notice any decline in my health and my physical performance and competing until my mid 30s; that's when the kidney decline really started to accelerate (and) by the time I was in my 40s, things were really started to become problematic," he added.

Things really began to go downhill about two years ago.

McBeth began to suffer high blood pressure, fatigue and lethargy. Cysts also began to grow on his kidneys, becoming so enlarged that it became harder to exercise because the cysts would push on his diaphragm, making it harder to take deep breaths. He also suffered nausea, headaches and just generally not feeling well.

"Things sort of snowballed and once things go bad, they pick up and get bad quite fast."

He was facing either dialysis — a process that removes waste and excess water from the blood and must be performed four or five hours every second day — or a transplant. [Read more]

From Journal Pioneer, Summerside, Canada, by Eric McCarthy

Recipient reflects on 30 years with sister’s kidney

Sisters, Yvonne Baglole, left and Tish Lidstone, enjoy a chat. This Saturday the pair mark a special milestone, Yvonne’s 30 years with the kidney Tish donated.

Yvonne Baglole was just a week into her three-times-a-week trips to Halifax for kidney dialysis when her doctor advised dialysis wasn’t going to work.

Her only hope was a kidney transplant.

Her brother and sister had already been tested, just in case, and her sister, Tish Lidstone, was identified as a perfect match.

But Baglole was reluctant. “I didn’t want her to jeopardize her own health for mine,” she reflects.

‘You don’t have any more choice. You either die or you get the transplant done,’ her husband, Jimmy recalls the advice from her kidney specialist.

“I knew I was going to do it for her and I never gave it a second thought,” Tish said of her on-the-spot decision to give Yvonne a kidney.

“She’s my sister. She’s my pride and joy.

I’m 11 years older than her and I looked after her.”

Tish was 61 and Yvonne was almost 50 when the transplant was performed on July 4, 1985. This Saturday they mark the 30-year milestone of that life-saving transplant.

Tish, now 91, said she’s never had any ill-health because of her decision.

As for Yvonne, “it’s made my life,” she said. Doctors could tell the kidney was functioning within five minutes of the transplant.

“That’s 30 years of life,” Tish acknowledges.

When the sisters were asked whether the kidney transplant created a special bond between them over the past 30 years, Tish responds, “Yeah, for the last 79 (years).”

“When you’re older like that and you get a baby coming into the household, it’s quite a prize,” Tish recalls. “We thought she was the most precious thing.”

“She’s been my protector for all my years,” Yvonne acknowledges.

Yvonne was born with Polycystic Kidney Disease, but only learned of it following the death of her brother Orville Betts. An autopsy determined he had PKD. Family members were subsequently tested. The other two members of her Betts family didn’t have the disease. Through time her kidneys wasted away to the point that dialysis or a transplant became necessary. [Read more]