Sunday, January 25, 2015

Perfect Match; Different Types of Dialysis; PKD Clinical Trials

Gift of Life

From Kearney Hub, Kearney, Nebraska, By AMANDA BRANDT Hub Staff Writer

A perfect match: Kearney woman receives a kidney from her boyfriend

Amy Glenn

Amy Glenn needed a kidney.

Her own were deteriorating, the result of a genetic disease attacking her organs.

Rowland Trampe, Glenn’s boyfriend, had an extra kidney. His were healthy and a near-perfect match.

The story is half medical drama, half “the craziest thing I’ve ever done for love” tale.

It’s the story of Amy Glenn’s new kidney.

Swelled to the size of footballs

Healthy kidneys are the size of a fist. The pair of organs filter the blood, removing waste and regulating levels of certain chemicals. Polycystic Kidney Disease is exactly what it sounds like: kidneys are covered with fluid-filled cysts, which can cause them to swell and decrease functioning capability. According to a National Institutes of Health website, 600,000 people in the U.S. have the disease, and it’s the fourth leading cause of kidney failure.

Glenn operates a State Farm Insurance agency at 311 W. 11th St. in Kearney. The former cosmetologist was diagnosed with Polycystic Kidney Disease two years ago, after a routine checkup came back with some troubling results.

The genetic disease came as a surprise to 46-year-old Glenn, who was adopted. After some research, she discovered her biological mother has the disease. Glenn’s 18-year-old special needs daughter was also diagnosed with the disease after a routine back X-ray. Her other two children haven’t been tested.

After the diagnosis, there wasn’t anything Glenn could do. Her kidneys swelled to the size of footballs, filling her abdomen and causing discomfort in her petite frame. Then, her energy levels plummeted.

“You live with it until you can’t take it anymore,” she said.

A summer check-up brought bad news: Her kidneys were extremely deteriorated. Glenn was placed on the transplant list in July, hoping a match could be found in a cadaver before she had to go on dialysis.

Almost a perfect match

Trampe, a farmer and rancher in the Riverdale/Amherst area, met Glenn through her insurance business. The two have been dating for about eight months.

After she was placed on the transplant list, Trampe wanted to see if he was a match. He had never considered organ donation and didn’t even know his blood type.

“I told her I was going to take the test, and jokingly I told her I was going to be a match,” the 54-year-old said.

Trampe called a number, filled out paperwork and sent in blood samples. The preliminary results were promising. There were more blood samples, more tests, and then the word came back: His kidney was almost a perfect match for Glenn.

“For me to be a perfect match like that the first time ... that doesn’t happen very often,” Trampe said.

He underwent intense physical scrutiny, including chest and lung X-rays. He had to have a psychological evaluation, ensuring he was mentally sound to give away one of his vital organs.

In October it was determined he would be her donor. They set a donation date of Dec. 17.

Glenn was nervous her body would reject the transplant. The weekend before surgery, she asked him one last time: Are you sure?

"I had two kidneys. I only need one.” Trampe said. “I had no hesitation.” [Read more]




From Mirror, United Kingdom, By Cher Heasmer


Hayley Maddocks donated one of her kidneys to her father Michael after his grew to 17 times the size of normal

Lifesaver: Hayley (c) didn't think twice about donating a kidney to dad Michael

Hayley Maddocks, 25, refused to take no for an answer when dad Michael was taken ill and his kidney started functioning at just 10 per cent

Hayley Maddocks had watched her father battle a devastating kidney disease all her life - but she never thought one day she would end up saving his.

But when a scan showed dad Michael's kidney had swollen to the size of a newborn baby, she didn't think twice about donating hers.

Mr Maddocks, 48, suffers from the genetic disorder polycystic kidney disease which caused his organ to function at just 10 percent and left it 17 times larger than normal.

Hayley, 25, offered to donate one of her healthy kidneys - but her dad REFUSED.

“He said if I gave him one my body would have to survive on just one, and if that one failed I would become seriously ill,” Hayley said.

“But when he started losing his appetite and became seriously ill, I realised I had to help.”

Hayley, from Birmingham, refused to take no for an answer and when her kidney proved a match for her father’s, supported by her mother Debbie and siblings Mark, Jack and Amy, she convinced Michael to accept. [Read more]




PKD Research

From The Chronicle of Higher Education, By Paul Basken


A Modern Clinical Trial: 7 Years, 1,000 Patients, and Plenty of Questions About Cost 1

The trial I participated in cost $40-million, and the combination of drugs being tested failed. That doesn’t mean the project was a waste of time, but it does show why many experts think clinical studies need an overhaul.

It was my ritual for seven years.

Every day, take two sets of pills—one labeled, the other a mystery. Every three months, take three sets of blood-pressure readings, twice a day for a week. Once a year, collect urine for 24 straight hours, lug it everywhere in an ice pack, then get it through airport security for a flight from Washington to Boston.

For me and about 1,000 other participants in our medical trial, the payoff for such tedious detail came back last month: The combination of the two common types of blood-pressure drugs being tested didn’t make any significant difference in the progression of our inherited kidney disease.

That was disappointing. But it didn’t necessarily mean that the trial was a failure, a waste of the time I spent on it, or a poor use of the $40-million in taxes that paid for it. The trial’s participants got top-notch medical attention for our polycystic kidney disease, and our records will almost certainly help others with PKD, now and in the future.

For instance, kidneys in PKD patients can easily double in size as our fluid-filled cysts grow. The study has now given scientists and policy makers an unprecedented amount of data relating kidney size to disease progression. That information could be critical to proving or disproving potential new therapies for PKD.

And the trial, known as HALT-PKD, may serve an unintended purpose, too. It could highlight some of the lingering inefficiencies in our nation’s standard medical-trial structures, which are in the process of getting some badly needed updates.

Randomized clinical trials are widely recognized as the gold standard for proving whether a treatment or practice really works. In our trial, everyone took two sets of daily pills. For half of the participants, the second pill was just an inert placebo. Neither the patients nor the trial doctors knew who was really getting both medications, allowing for a rigorous test of the two-drug combination.

All of that logistical structure can mean a huge financial cost. Randomized trials now account for about 20 percent of the $30-billion annual budget of the National Institutes of Health. Private drug companies spend more than $30-billion on them.

Yet drug trials fail at a rate of about 90 percent. That level of failure has attracted serious attention now that U.S. medical research has entered a period of tighter budgets, accelerating technological advances, and extensive procedural reassessments. In that light, much about our trial’s design and execution illustrates a system of human experimentation that’s ripe for overhaul.

Just the patient-travel costs of our trial totaled enough money for the NIH to have financed several standard-size research projects. That’s because the 1,044 volunteer participants could be found only with a nationwide recruitment, leading to a structure in which they were required to visit an academic medical center in one of six American cities every six months, with airfare and hotel costs reimbursed.

Given the study’s failure to show a benefit from its primary objective, it’s "a very reasonable question" to ask whether the money was well spent, admitted one of the trial’s principal investigators, Vicente E. Torres, a professor of medicine at the Mayo Clinic, in Minnesota. [Read more]
TVA Medical, Inc., today announced it has won the 2014 Innovations in Cardiovascular Interventions (ICI) Best Start-Up Innovation Award. The company received the top international honor for its everlinQTM System, a catheter-based technology designed to create hemodialysis access for chronic kidney disease patients in a minimally-invasive procedure. The investigational technique has the potential to revolutionize how patients with chronic kidney failure receive ongoing hemodialysis. Today, dialysis patients typically receive open vascular surgery that often requires repeat procedures in order to be connected to the dialysis machine. [Read more]




Living with PKD

From JamBase

Eric Bolivar Suffering From Polycystic Kidney Disease


We've long been a fan of New Orleans drummer Eric Bolivar's work in such projects as Pimps Of Joytime, Some Cat From Japan, Bonerama, The Anders Osborne Band and backing Tab Benoit, so we're saddened to find out that Bolivar is dealing with a serious medical issue.

Eric revealed he's been hospitalized and diagnosed with Polycystic Kidney Disease in a post on Facebook:

"I don't even know where to begin. Thank you thank you thank you to all of you for the unbelievable and overwhelming outpouring of love and support. It means the world to me. Hugs and kisses to all of you. I'm still at the hospital (LSU in New Orleans) and will be for at least a few more days. So if you haven't heard, I have polycystic kidney disease. There are multiple and apparently inoperable benign cysts on my kidneys. They say that it's hereditary and nothing to do with anything that I did or didn't do to myself. They also said that it's a good thing I got this a bit later in life as kids with this don't always make it. I have a few more rounds of dialysis here before I start dialysis at home. For those that have been asking, I don't know anything about transplant protocol yet but I'm about to find out. Btw to the people who have asked about that, I am forever grateful for you to have even considered what you're considering. The road ahead is unclear on a lot of fronts at this point, so I have a lot to figure out. I know with all of you behind me I'll be ok. Thank you all so much and hope to see you out there soon! Love love love (as Seal would say) To be continued" - Eric Bolivar

Bolivar's friends, fans and family have started a Go Fund Me campaign to help raise money for what's sure to be many medical and personal costs the drummer will need to pay for his treatment and while he's sidelined from his role as a full-time musician. The page notes, "Eric has been diagnosed with level 5 kidney failure, and will require dialysis daily for the rest of his life, and possibly a kidney transplant. This will sideline him from doing what he was meant to do for a living for who knows how long, and he desperately needs our help." We really hope Eric's back on stage and gets healthy as soon as possible.




From Express & Star, United Kingdom

Kay's plea to get disease on the run

Kay Turner and her son Charlie, aged three, who has polycystic kidney condition. Kay has set up a PKD Virtual 10K run to raise money for the PKD charity.

Kay Turner and her son Charlie, aged three, who has polycystic kidney condition. Kay has set up a PKD Virtual 10K run to raise money for the PKD charity.


Two members of her husband's family died of a hereditary disease – and now her three-year-old son, husband and sister-in-law are battling it.

But Kay Turner is determined to make a difference for future generations by boosting a charity's search for a cure for polycystic kidney disease.

And now she has set up a fundraising run with a difference to bring in hundreds of pounds.

The 5km run can be done at any time, anywhere, and people can donate the money they generate in sponsorship for the Polycystic Kidney Charity.

The family has been hit by the news that more cysts have been discovered growing on three-year-old Charlie's kidneys in recent weeks.

As they do not know what the future holds for Charlie, 33-year-old Mrs Turner, of Chasetown, has decided to focus on her charity campaign. [Read more]





From Hamilton Chapter, PKD Foundation of Canada

Dialysis: Different Types for Different Patients

Wondering which type of dialysis is right for you? Dr. Catherine Clase will introduce the different types of dialysis, and discuss their benefits and disadvantages in a public presentation on Jan. 25 in Hamilton.

Hamilton, Canada, January 20, 2015 --(PR.com)-- Dialysis treatments are not easy, either in a medical setting or at home. There are different types of dialysis -- hemodialysis and peritoneal dialysis -- and not everyone is a suitable candidate for both. Some patients prefer one over the other because they find it easier to do, more comfortable, or more convenient.

Dr. Catherine Clase, a Nephrologist with St. Joseph’s Healthcare Hamilton and an Associate Professor of Nephrology at McMaster University, will begin a discussion about dialysis by explaining the similarities and the differences between the types.

"I’m delighted to have this opportunity to talk about different dialysis options," Dr. Clase said. "No-one ever wants to go on dialysis, but if your kidney function is too low to stay well, and there isn’t a transplant immediately available, it will keep you going. Knowing what the options are and working with the medical team is the best way to ensure that you stay as healthy as you can and that the treatment gets in the way of living as little as possible."

Following Dr. Clase's presentation at 2pm in Classroom B on the 2nd floor of the Juravinski Innovation Tower at 50 Charlton Ave. East, a recent organ transplant recipient, and a patient who is currently doing at-home hemodialysis, will talk about their personal experiences on dialysis.

"My transition to life on dialysis happened at the same time as my transition into parenthood," said Arie Pekar, who received a kidney from a live donor last year.

"All the while, I focused on being a new dad, keeping my business running successfully and advocating to find a living kidney donor. I learned how to dialyze at home to give me more time with my family and more flexibility for my work schedule."

"It can be difficult to be learning about dialysis once your kidney function has declined to the point where dialysis or a kidney transplant are your only choices in order to stay alive," said the Hamilton Chapter Coordinator for the Polycystic Kidney Disease (PKD) Foundation of Canada. [Read more]

Sunday, January 18, 2015

Mapping Cat Genomes - PKD Mutation in Same Gene as Humans: PKD & Facebook - 5 Years Later

PKD Research

From Genetic Literacy Project, Ewen Callaway | January 14, 2015 | Nature News

Expanded efforts to sequence cat genomes may provide clues to human disease


Cats may have beaten dogs on the Internet but felines have been a rare breed in genetics labs compared with their canine counterparts. Now, at last, cats are clawing their way into genomics.

At a meeting this week in San Diego, California, a close-knit group of geneticists unveiled the first results from an effort to sequence the genomes of 99 domestic cats. The work will benefit both humans and felines, the researchers say, by mapping the mutations underlying conditions that afflict the two species, such as kidney disease.

In 2004, a team led by geneticist Leslie Lyons of the University of Missouri in Columbia (and owner of two female cats, Withers and Figaro) discovered that mutations that cause polycystic kidney disease — a major cause of renal failure in older individuals — occur in the same gene in humans and cats4. Cat versions of type 2 diabetes, asthma, retinal atrophy and numerous other conditions have close similarities to human disease. Cats can also become infected with a virus that is closely related to HIV and experience symptoms similar to those of people with AIDS.

Lyons’ team is cobbling together funding from anywhere it can find it. The researchers are asking private owners, breeders and even pet-food companies to donate the U.S. $7,500 needed to sequence the genome of a single cat, which could be one of a donor’s choice.

With the money raised so far, the team has sequenced the genomes of 56 cats, including fancy breeds such as Burmese; cats with specific diseases; and a kitten named Dragon and his parents Ares and Marcus — the hope is to use the feline trio to narrow down the genetic basis for traits they share, such as their silver, curly coats. [Read more]


From PKD Foundation

PKD Foundation Fellowships

For decades, the PKD Foundation has funded research aimed at accelerating treatments to patients so that one day no one will suffer the full effects of polycystic kidney disease. We are excited to announce that the Foundation has released a Request for Applications (RFA) for two fellowships, which will each be funded for $50,000 a year for two years (pending submission of first year report).

The PKD Foundation is interested in fostering research in the area of polycystic kidney disease with the goal of furthering our understanding of the physiological, biochemical and genetic mechanisms of this disease. This fellowship is designed to allow trainees to obtain significant research experience as they initiate careers in polycystic kidney disease research.

Eligibility

Fellows may submit a proposal that examines any aspect of polycystic kidney disease biology. Applicants must:

Hold an M.D. or Ph.D or the equivalent degree.

May not have completed more than three years of research training after completion of the M.D. (or equivalent) or two years of postdoctoral research training after the Ph.D. at the time of application submission.

Complete research under the direction and mentorship of a sponsor.

Not hold another full fellowship award although institutional supplemental support is acceptable.
Commit a minimum of 75% of time to research during the fellowship period.

Application Procedure

Fellowship page application coming soon!

The electronic application opens on Jan. 26. Please see the Application Sections tab for detailed application information.




Living with PKD

From WTNH, Channel 8, New Haven, CT, By Ann Nyberg-News Anchor

Living with Polycystic Kidney Disease

NEW HAVEN, Conn. (WTNH)– Polycystic Kidney Disease is hereditary, and patients will need a kidney transplant.

Antoinette Necklas of Guilford, her mother, brother, and sister, have the disease. Necklas just went on the transplant list with hundreds of others in the state. She and her doctor, Joni Hansson, talk about the disease and what it’s like to go on such a list.

“At first it was really scary, like I didn’t know what to expect,” said Necklas. “You go through a lot of testing, so not everybody can get a transplant. You have to get for an EKG, you have to go through a stress test, you have to make sure your colonoscopies are up to date, breast exams, and teeth cleaning. The person donating the kidney has to go through testing also. They want you to be healthy and the person who is going to donate.”

“We’re hoping to keep her kidney function stable,” said Dr. Hansson. “When people have Polycystic Kidney Disease, probably the most beneficial thing you can do for them is to control their blood pressure, control their blood pressure with certain medications early on, make sure they stay well hydrated, and avoid medications that can actually harm the kidney and follow over time.”

Necklas, a mother of three, remains hopeful, just like so many others, that she will find a donor.




From GlobalNews, Abbotsford, British Columbia, Canada, By Amy Judd

Abbotsford Police inspector donates kidney to department detective

VANCOUVER – Inspector Kevin Wright of the Abbotsford Police Department is set to give one of his colleagues a very important gift this week. He is donating one of his kidneys to Detective Roy McBeth, a Domestic Violence Unit investigator.

“I’m incredibly humbled and quite overwhelmed,” said McBeth of the gesture.

He has been with the department since 2004 and has faced many challenges in his job and in his role as an athlete and competitive cyclist. However, his greatest challenge was in the form of a medical diagnosis, which indicates that the degenerative kidney disease, Polycystic Kidney Disease (PKD), identified in his youth, is now creating a medical emergency.

Based on his diagnosis, McBeth would likely be facing a future involving kidney failure and dialysis. PDK runs in McBeth’s family, so the potential donor pool was narrowed down to family and co-workers. With some reluctance, McBeth appealed for help in June, 2014, and that is when Wright, along with many others, stepped forward.

Wright turned out to be a match and on Wednesday, he will become a living kidney donor for McBeth. [Read more]




From KCRG, ABC Affiliate, Cedar Rapids, Iowa, By Chris Earl, KCRG-TV9

The Facebook Kidney Story: Five Years Later

CEDAR RAPIDS — Life moves on for both John Burge and Nick Etten but these two will be forever intertwined by what’s inside.

It was more than five years ago when these two men emerged from a conference room at the University of Iowa Hospitals and Clinics with a story that would stretch from Iowa to newspapers in Germany, Norway and Russia.

In September 2009, John’s son, Matthew, put out a post that his father, diagnosed with polycystic kidney disease, required a transplant. Matthew wrote on Facebook that his dad needed a new kidney.

“It’s genetic and that runs through my family, which is part of the reason looking outside the family was so important in the first place,” said Burge.

Nick, then 24 and, like Matthew, a student at Kirkwood at the time, replied that he would offer up his kidney.

That is how a global news story is made.

It’s also how a life is extended.

John Burge is now 55 and still living in the same Cedar Rapids home as at the time of the transplant. John and Nick, now 29, wear shaggy beards for the winter, giving them a far different appearance than they did in December 2009, when the operation took place.

Yet this bond will always remain for the two men. One giving up a kidney to save the other.

“There’s not a day that goes by where I don’t think about it,” Burge said about the donation Thursday. “What a wonderful gift I’ve been given and the opportunity to live my life like I was before.”

Burge was able to take in the juice of life, the milestones that any father would treasure and cherish always.

“My daughter got married this year and that was huge, my ability to get up there and dance with her and that moment and that would not have been possible without that transplant.”

Sunday, January 11, 2015

Gifts of Life from Brothers, Boy Friends & Strangers

Gift of Life

From Nebraska TV, ABC Affiliate, By Lauren Scharf

Woman Battles Kidney Disease Receives Organ from Boyfriend


It isn't everyday you receive the gift of life, but one Kearney woman needing a kidney transplant did recently receive such a gift.

Her journey to find an organ match is a remarkable one -- after just eight months of dating, Rowland Trampe on a whim checked to see if his kidney would work for his girlfriend Amy Glenn, a lifesaving commitment.

"I knew I was going to have one, I just thought I would be further down the road," explained Glenn.

After months of fighting the discomfort of a hereditary Polycystic kidney disease Glenn knew a transplant was her best option.

"I have cysts on my kidneys and that they basically keep growing to the point that they just shut the kidneys down, and so mine were still functioning a little bit and so it was either go on dialysis now or get a transplant done," she explained.

Glenn was put on the transplant list in July with an estimated two year wait, and then her boyfriend started to learn more about her disease.

"I told her I was going to be a match and then I was kind of joking but when I took the first blood test and they called me and they told me I was about 98 percent perfect match, they said that was pretty good," explained Trampe.

"I thought it was amazing because usually you have to get more than one person tested to even have a match and then they have to be really healthy so it was a miracle really that he was a match, and a perfect match," Glenn said.

Without much hesitation, the date for surgery was set, December 17.

"I wasn't worried about it and to know that it was going to help her have a better quality of life," Trampe said.

"An emotional roller-coaster up and down and then praying the kidney takes. Getting it from a live donor, and luckily everything went really good and smooth for us," described Glenn.

As each day gets better for the couple, Amy wants to emphasize the significance of donors.

"Once you have gone through this you realize how important donors are. And you know, I am very, very, extremely blessed and thankful that things went you know the way they did for myself," said Glenn.

"It's a commitment. It is, but I think it is a worthwhile commitment, I really do. You can put it on your driver's license and I have always been asked that but I have never had done it, but I will now," said Trampe.

"Best Christmas present I could have gotten," said Glenn. [Read more]




From Iowa City Press-Citizen, by Holly Hines

Hills man donates kidney to sister in Florida


Dan Beck of Hills poses with his sister, Sara Hendrzak,


As a child, Sara Hendrzak eagerly awaited visits from her older brother, Dan Beck, when he was away at college.

Decades later, Beck, 59, paid Hendrzak a life-changing visit when he traveled from his residence in Hills to Jacksonville, Fla., in December to give her one of his kidneys.

Hendrzak, 49, has polycystic kidney disease, a condition that was causing kidney failure. She was diagnosed with the disease, which is genetic and causes clusters of cysts to develop on the kidneys, at age 17. However, she didn't start showing symptoms until five years ago.

Hendrzak and one other sibling among her six brothers and sisters also has the condition.

She said Beck's decision to donate his kidney was humble, generous and invaluable to her.

"It meant the world to me," Hendrzak said.

Facing a need to begin dialysis treatments if she didn't receive a new kidney, Hendrzak said she experienced severe fatigue in the weeks leading up to her surgery. She said she had little energy for anything but sleep and work at her job as a nurse case manager.

Her kidneys were functioning at just 7 percent of their capacity before the surgery on Dec. 16.

Beck said during the past year, he watched his wife, Jane, receive dialysis treatments for kidney failure caused by diabetes. She died in June at the age of 60.

He said when Hendrzak's need for a kidney first arose, he couldn't donate because he was busy caring for his wife. His other sister, Mary Ann Wagner, stepped up to give her kidney, but she was not eligible to donate.

When Beck learned Wagner was ineligible, and after watching his wife go through dialysis, he made the decision to donate.

"I sure didn't want Sara to have to do that," he said. [Read more]




From Morris Sun Tribune, Morris, Minnesota, By Lois Torgerson, The Northern Star




Editor's Note: This story originally appeared in The Northern Star on Thursday, Dec. 25, 2014. It's reprinted here with permission from the newspaper staff.


It's not about me; it's all about Kyle!" That is Ricky Anderson's first comment as I came to interview him for this great story. You see, Kyle Athey became Ricky's kidney donor last September — and now Ricky is anxiously waiting to go back to his job at Border States Cooperative in their fertilizer department.

What could be better than the gift of life? That is what Ricky Anderson received from a young man, Kyle Athey, who grew up in the Athey family home as neighbors of the Anderson family in Clinton. This is a "Christmas Story" of two parts — one of the recipient — and one of the donor's.

Ricky was suffering from Polycystic kidney disease, the same disease that took the lives of his mother and grandmother much too soon many years ago. He became involved in HelpHOPELive, a non-profit organization that helps the transplant community, a program through the North Central Kidney Transplant Fund, and as a result, a very successful local benefit was held for Ricky in late March 2014.

Move forward into June — A phone call to the Andersons' home brought some great, almost unbelievable news to Rick and Lori. A call from a young man, Kyle Athey, who had begun the testing as a donor early last winter — a process that only a very few people knew anything about.

Kyle learned about Ricky's disease and that his Mom passed away from it at the young age of 52. That was the first that Kyle thought about looking into the donor program.

Kyle began the testing process and when he found out he was a match, he asked his transplant coordinator, Cherish, at Sanford hospital in Sioux Falls, if he could be the one to let Ricky know about the "match." When he called Kyle asked, "Do you remember me?" "Of course," Rick said, recalling the little fellow who lived in his neighborhood all his life. You see Ricky is 54 and Kyle is 24 years old. [Read more]




From Pilot Mountain News, Walnut Cove, North Carolina, By Reverend Judy Smith

I Am Blessed

What I am thankful for:

God has been so good in my life. I had an inherited disease, Polycystic Kidney Disease. I had been on renal (kidney) dialysis for two years from 1998 to 2000. Those two years were very difficult as I had had surgery to remove both my kidneys due to my doctor’s recommendation; the kidneys were quite large and I was on the transplant list.

I met James Smith at a church and we started dating. Both of us had experienced the deaths of our former spouses. We dated one month, November, and got engaged the following month, Dec. 26, 1999. We were contemplating our wedding date. I felt strongly it should be on Friday, Jan. 28, 2000. I didn’t know why, I just knew it had to be that date.

The week before our wedding, Friday, James came to my home and I told him how sick I felt. I had about given up and really did not think I would live until our wedding date. He said “I found you and really don’t want to lose you.” Sunday night at 11 p.m., I received a call from the hospital that they had a kidney for me.

We had a snow storm and snow was on the ground and in the streets. We headed to the hospital in Winston-Salem and crossed railroad tracks not far from my home. I told James we are excited and happy, but, there is a family mourning for their loss of their loved one. We prayed right there in James’s pick-up for that family.

I had to spend the night waiting for the transplant team to evaluate whether I was a candidate to have this kidney. I laid in the hospital bed and James sat the entire night in a straight-back chair next to me. I turned to him and asked, “This is our very first night together, what do you think?” He stated “Not much!” Shortly after, (Monday morning) a member of the transplant team came into my room and said, “It’s a go!” They took me into surgery and everything was a success. [Read more]




PKD News

From Manchester Evening News, United Kingdom, By Katie Fitzpatrick

Battling grandad is named as Kidney Research UK ambassador


John Roberts needs a kidney transplant in order to overcome polycystic kidney disease. Picture: Joel Goodman

A grandad waiting for a lifesaving kidney transplant has become an ambassador for a leading charity which help people in a similar situation.

John Roberts has a rare and severe form of polycystic kidney disease, which has caused his kidneys to swell to forty times their normal size.

The condition also means his kidneys are working at just nine per cent of their full capacity.

John, 56, hopes to have the larger, left kidney removed this year – the body can function with just one kidney – and he will then be placed on dialysis until a match is found for the remaining organ.

But despite the painful condition, which he has lived with since 1995 and also causes shortness of breath, he remains positive and says he’s looking forward to raising awareness in his new role as an ambassador for Kidney Research UK.

John, who lives with wife Linda in Irlam, will visit patients at local hospitals and community groups to share his story and give advice.

He said: “I am looking forward to the role.

“I’ll be talking to people about kidney disease and Kidney Research UK. I am very honoured to have been asked by Kidney Research and I am very excited about my role.”

A normal kidney should only weigh half a pound but John’s weigh about 19 pounds.

As well as his ambassador role, John is also urging others to sign up to become an organ donor and help the 10,000 people waiting for a transplant in the UK alone.

The former first aid trainer is desperate to see his three grandchildren Sam, six, 10-year-old Jenna and 11-year-old Faye grow up and says he needs the transplant in order to lead a normal life.

He added: “I am feeling very positive. By the end of the year my kidneys could stop working altogether, but I am going to be on dialysis and the left kidney will be replaced with a fully functioning one.” [Read more]

Meeting Jan 17, 2015, from 2 to 4 PM, Location: Centre Generation Emploi, 7000 Avenue du Parc, Office 414, H3N 1X1

Come join us as the PKD Foundation of Canada’s Executive Director, Jeff Robertson provides the group with an inside look at the Foundation; discussing past, present and future research grants and what is in store for the PKD Foundation of Canada on a national level in the coming years.

We will also take some time to discuss current and future goals for the Montreal Chapter with respect to advocacy, education, support, awareness and fundraising initiatives. This is a great opportunity to have your voice heard and to make the greatest impact in the PKD community, both on a local and national level.

The Centre Generation Emploi is within walking distance from Parc Metro Station – Blue Line.

This presentation is part of an ongoing series of two-hour informational support meetings hosted by the Montreal Chapter of the PKD Foundation of Canada. They are open to the public, free of charge and the venue is wheelchair accessible. Registration is not required. Free onsite parking is available, and the venue is easily accessible from Parc Metro Station.




From PKD Foundation

PKD Foundation Welcomes New Chief Scientific Officer

Dr. David Baron


We're excited to announce our new Chief Scientific Officer, who will be joining the PKD Foundation on Feb. 9, 2014. David Baron, Ph.D., will be leading the Foundation's work in research toward finding treatments and a cure. Baron's background in biomedical sciences and drug development will keep us moving forward with progress in research.

Baron is particularly interested in the Foundation's work as he has PKD, along with several family members. Baron received a kidney transplant in 2009. Also, his main research focus has been the movement of electrolytes and water across normal and abnormal epithelia.

Baron joins us out of retirement from Takeda Global Research and Development (Deerfield, Ill.) in 2013. During his retirement, he traveled and served as a legal and regulatory expert witness in toxicology and pharmacology, which he has done since 1989. Baron was with Takeda since 2001, where he began as their first U.S. Director of Toxicology and most recently was Vice President, Nonclinical Safety and Risk Evaluation for the U.S. and European Union.

Other roles he had prior to Takeda include Senior Science Fellow for Global Toxicology with Pharmacia (Skokie, Ill.), and increasing positions of responsibility with Searle/Monsanto (Skokie), becoming a Monsanto Science Fellow in Metabolism and Safety Evaluation. At Searle, he was head of quantitative light and electron microscopy. He also represented Safety Assessment on drug development teams. Earlier in his career, he was on the faculty of the Medical University of South Carolina (Charleston, S.C.).

With an NIH grant, he founded the Core Structure-Function Laboratory in the Department of Pharmacology. Baron received his B.A. in Biology and Ph.D. in Anatomy from The University of Chicago. His did his postdoctoral fellowship in pathology and pharmacology at the Medical University of South Carolina. He has been a grant reviewer for the National Cancer Institute, given invited seminars and has served on several national scientific boards.

Sunday, January 4, 2015

Get Gift of Life; Dancing Again; Visualizing Worldwide Kidney Disease; Urinary BioMarkers for PKD

Gift of Life

From Lancashire Evening Post, United Kingdom

Lorraine determined to help others get gift of life

Determined: Fundraiser and transplant patient Lorraine Pooley

Kidney transplant patient Lorraine Pooley is determined to help others after receiving the gift of life.

The 53-year-old has become a dedicated campaigner for renal patients and has spent much of her time this year raising awareness.

She campaigned during the British Transplant Games, spoke as part of the National Kidney Conference 2014 and has even been to Westminster with fellow patients, donors and carers.

Lorraine, of Chapel Street, Brinscall, said: “Organ donation has allowed me to have a voice this year.”

Lorraine was in renal failure due to polycystic kidney disease, a life-threatening hereditary condition that led to the death of her father, aged just 36, and other close relatives.

The condition caused so much fluid to build up in her body that Lorraine says she spent years looking as if they were pregnant.

She was given medication but in 2010, doctors told her they would have to remove one or both of her kidneys.

A kidney was removed and she had dialysis until a transplant was carried out using a kidney from her youngest sister, Melissa Wilding, on February 14, 2013.

The operation went well and Lorraine’s health improved, although she does still have the disease and complications.

Lorraine said: “Having the transplant from my sister has given me a better quality of life and it has enabled me, more than anything, to use my voice to help others in the same situation. However, my polycystic kidney disease is still there. It will always be that way.”

Exactly a year after the transplant, Lorraine held a party at Brinscall Athletics Club to celebrate the anniversary and support fund-raising appeal Kidneys For Life.

Among the guests were her family, her surgeon and friends made in hospital.

Since then, Lorraine has been committed to raising awareness of kidney disease and organ donation.

It has been a busy year for Lorraine. She raised more money for Kidneys For Life when she was involved in organising a joint fund-raiser at the Rose And Crown pub in Chorley town centre.

In July during National Transplant Week, she urged people to tell their families if they wish to become organ donors, so they would be aware when they died.

Lorraine was went to Westminster with the British Kidney Patient Association to talk to a group of MPs about organ donation and calls for an “opt out” system. [Read more]




From CommonHealth. WBUR 90.9, Boston, MA, By Grace Clackson

My Body, My Life: How A Kidney Transplant Got Me Back On The Dance Floor

(SaundiSeptember/Compfight)

In recent years, exercise was not on my radar. Like many others, I was busy balancing work and family. Honestly, I thought regular gym dates were only for overweight people. It wasn’t always this way — I loved dancing growing up but just couldn’t make room for it in my adult life.

But all of that changed in 2010.

I found myself more and more fatigued and around the same time my mother died from polycystic kidney disease (PKD), I learned I too had inherited the genetic kidney disorder. Most people with PKD, a chronic kidney disease where clusters of cysts develop primarily within the kidneys, get the disease between their 50’s and 60’s.

I was on the verge of kidney failure at 44 years of age.

Eventually doctors told me that the only cure was dialysis or a kidney transplant. At this point I had three young children and the news was debilitating. But we quickly gathered up some courage to ask for help. My brother was not a fit since he too had PKD; my husband had a different blood type. I went to the Internet to ask for a kidney. Our community rallied and my nephew-in-law was generous enough to go through a battery of tests that revealed a nearly perfect blood match.

On February 28, 2011, I had a successful kidney transplant in my native Philippines. As soon as my anesthesia wore off, I felt a light turn on–the extreme fatigue was gone. My donor and I recovered quickly and we were back on our feet within a month after surgery. Four months later, the honeymoon was over and I was back in the hospital with an mysterious infection. Many feared the worst, suspecting post-transplant lymphoma, but it turned out to be an infection caused by natural bacteria in the gut.

All of this resulted in major weight loss. I felt very weak and for the first time in my whole life, I was told to see a nutritionist so that I could gain weight efficiently. Soon, I started working out twice a week with a personal trainer. Within three months, I started feeling great, seeing changes in my body, and gaining strength. Eventually, I stopped working with a trainer and started my own daily exercise regimen. I combined weight conditioning on my own and attended group exercise classes, trying everything from pilates to yoga, bootcamp to cardio dance.

(Courtesy of Grace Clackson)

In my first year of exercising regularly, I discovered that fitness is essential to my everyday life. It kept me sane, happy and made me a better person to everyone. As life returned to normal, I made the decision not to return to work and instead focus on my family. I started attending dance classes again and began to learn Latin ballroom dances. I enjoyed ballroom dancing so much that I participated in local Pro-Am competitions. While doing this, I discovered that my normal exercise regimen wasn’t good enough–I needed to train like dancers do. I discovered “barre” conditioning classes and fell in love. This type of workout combines all the elements of exercise that I love and need for ballroom dancing- free weights, dance-based movements, core-focused exercises and stretching. I felt stronger and had the endurance to be in competition the whole day.

This experience–the transplant, the recovery, the exercise-fueled empowerment, led to my desire to help other women feel the same way. This year I started training to be a group fitness instructor and decided to open my own studio. I truly believe that no one should have to go through a life crisis to discover that exercise should be part of their life.




PKD Research

From UMASS: University of Massachusetts Medial School, By Jim Fessenden

Scientific America article highlights UMMS research that led to the discovery of ciliopathies

Over the last decade cilia, the tiny, bristly, hair-like structures that dot cell surfaces, have gone from relative obscurity to a position of importance for understanding multiple complex human diseases now collectively known as ciliopathies. These diseases, which are caused by abnormal or absent cilia, are now known to be at the root of a number of genetic disorders, from polycystic kidney disease to some forms of retinal degeneration.

Scientific American, George Witman, cilia, polycystic kidney disease, ciliapathies, cilia dysfunction, UMass Medical School, UMMS, UMassMed
George B. Witman, PhD

A news article about ciliopathies published in Scientific American explains how research by George B. Witman, PhD, professor of cell & developmental biology and Gregory J. Pazour, PhD, professor of molecular medicine, led to the discovery that cilia dysfunction causes polycystic kidney disease (PKD), which affects about 12.5 million people worldwide.

From the initial discovery, numerous other links between cilia dysfunction and disease have been made. Commonly known motile cilia beat back and forth outside the cell and help regulate fluid flow. It turns out most human cells also have at least one primary or nonmotile cilium that functions more like a molecular antenna. This cilium is what detects and conveys important messages to its cell about the local environment.

“The signaling machinery is concentrated in the cilia,” Dr. Witman said. “All in this very tightly controlled constrained space.”

When cilia don’t form properly the resulting miscommunication can disrupt organ formation during development and lead to congenital disease.

Witman, who authored a separate review article published by BioScience in December, said the future may include cilia-based gene therapies that could potentially treat diseases such as retinal degeneration before it causes blindness.




From HumanoSphere.org, By Lauren Hashiguchi

Visualizing the rise of chronic kidney disease worldwide


Non-communicable diseases today account for nearly 70% of all deaths globally, according to the latest results from the Global Burden of Disease study, an ongoing project to measure the impact of disabling and deadly conditions across the world.

Among the major non-communicable killers such as chronic obstructive pulmonary disease, diabetes, and stroke, one of the lesser-recognized but increasingly significant causes of death is chronic kidney disease (CKD).

In 2013, nearly one million people died from CKD. While this represents less than 2% of all deaths globally, it is a 135% increase from the number of CKD-related deaths in 1990.

While the global increase in CKD-related deaths is driven in part by people living to older ages, there is no scientific consensus on what is making this increasingly prominent among younger adults, with a near doubling of CKD-related deaths among people aged 15-49 since 1990.


Probability of death from chronic kidney disease among both sexes, ages 15-49, 2013
Chronic Kidney Disease younger
Source: Global Burden of Disease Study 2013. To explore the data visualization online, go tohttp://ihmeuw.org/2u5i


Certain regions are more greatly affected. Central America is experiencing notable declines in life expectancy because of the rise of chronic kidney disease, which causes 6% of all deaths in this region. Some of these regional and age-based differences are even more clear in the following graphic, which shows the global probability of death from CKD among older adults (as compared to the graph above focused on those between 15-49 years old).


Probability of death from chronic kidney disease among both sexes, ages 50-74, 2013
ChronicKidneyDiseaseGBD
Source: Global Burden of Disease Study 2013. To explore the data visualization online, go tohttp://ihmeuw.org/2u5k


Called out as a “forgotten non-communicable disease” by GBD collaborator Alan Lopez, this condition causes considerable disability and is fatal if untreated. The disease affects populations in many low- and middle-income countries where the expensive treatments required – dialysis and kidney transplant – are not available. [Read more]



From Nephrology News

Study finds potential urinary biomarkers for autosomal dominant polycystic kidney disease

A new study published in Clinical and Experimental Nephrology demonstrates that three urinary biomarkers, NGAL, M-CSF, and MCP-1, are potential candidates for indicating autosomal dominant polycystic kidney disease (ADPKD). Researchers from the Japanese Society of Nephrology measured 28 biomarkers in urine taken from ADPKDpatients to compare with that of healthy subjects, and performed a gene expression analysis of the kidney from DBA/2FG-pcy mice (ADPKDmodel animals) to identify prospective biomarkers. Additionally, they investigated the DBA/2FG-pcy mouse urine samples to determine the biomarkers’ efficacy. http://link.springer.com/article/10.1007/s10157-014-1078-7

The researchers reported were statistically significant differences in 12 of the 28 prospective urinary biomarkers between urine from ADPKDpatients and that from healthy subjects. Six of these matched with highly expressed gene products of DBA/sFG-pcy mouse kidneys. Among those six biomarkers, NGAL, M-CSF, and MCP-1 showed significantly higher values in the urine of DBA/2FG-pcy mice than that of wild type.