Sunday, February 22, 2015

Peritoneal Dialysis: A gentler process; Study shows patients starting dialysis sooner; Call for PKD to be included in EU action on chronic disease

Kidney Dialysis

From Today Singapore, BY MATTHIAS TAY


Peritoneal dialysis: A gentler treatment process for kidney patients


Before going to bed, Madam Sarbanon Buang, 63, hooks herself up to a dialysis machine, which draws out waste that has collected in her body during the day and injects a fresh supply of a glucose solution.

The procedure, carried out with the help of her husband and caregiver Yassin Buang, is repeated several times over a 10-hour period nightly, leaving Mdm Sarbanon free in the day to go about her daily activities.

Mdm Sarbanon is among the relatively few kidney patients in Singapore who choose to take up peritoneal dialysis (PD), which can be done at home, but is shunned by many patients due to concerns about having to perform the procedure by themselves.

This is despite the fact that PD has many advantages — it is a gentler treatment process that lessens the burden on the kidney, said medical professionals.

The take-up rate for the procedure remains low, at about 330 patients as of June last year — compared with close to 3,000 on blood dialysis or hemodialysis (HD), said the National Kidney Foundation (NKF).

Asked how the foundation would expand on its outreach for PD, senior nurse clinician Tang Woon Hoe said: “We are working in this area, to slowly introduce PD to all nursing homes in Singapore. As the whole nation ages, I think the nursing home is one facility people will require. We also foresee that more of our PD patients may need nursing homes, so we are also looking at that.” [Read more]



From MedicalXpress

Why are kidney patients starting dialysis sooner?

Over time, patients with advanced kidney disease have been starting dialysis progressively earlier in the course of their disease, likely because doctors are embracing higher levels of kidney function as being appropriate for dialysis initiation. The findings come from a study appearing in an upcoming issue of the Journal of the American Society of Nephrology (JASN).

Over the years, US patients with advanced kidney disease seem to be starting dialysis earlier in the course of their illness, which could mean that some patients will spend a significantly longer time on dialysis. To understand why patients might be initiating dialysis earlier, Ann O'Hare, MD, MA, Paul Hebert PhD (University of Washington), and their colleagues conducted a study using the electronic medical records of 1691 veterans in whom the decision to start dialysis was made at a VA medical center from 2000 to 2009.

The researchers found that, as for the wider dialysis population, patients in the study were starting dialysis with higher levels of kidney function in more recent years. Over time, there were no measurable differences in how sick patients seemed to be at the time of initiation to explain this trend or in the documented reasons for dialysis initiation. For example, neither the percentage of patients who were acutely ill nor the distribution of different types of clinical signs or symptoms present around the time of dialysis initiation changed appreciably over time. Cardiopulmonary and gastrointestinal signs and symptoms and weakness and/or fatigue were the most commonly documented. Also, while treatment decisions were occasionally driven by level of kidney function in the absence of other clinical signs or symptoms, this practice was no more common in recent compared with earlier years. [Read more]




PKD Policy

From The Parliament Magazine, Written by Tess Harris and Dr Richard Sandford on 20 February 2015 in Opinion Plus
PM+: Kidney disease must be included in EU action on chronic conditions

ADPKD treatment could set the standard for tackling complex genetic conditions, argue Tess Harris and Dr Richard Sandford.


"Treatments to prevent or slow other forms of chronic kidney disease do not work with ADPKD. There are currently no approved medical treatments to delay the disease's progression"

Accounting for one in ten patients needing dialysis or a kidney transplantation at a cost of €1.5 billion annually in the EU – Autosomal dominant polycystic kidney disease (ADPKD) is one of Europe's leading causes of kidney failure.

ADPKD causes fluid-filled cysts to grow in the kidneys, causing enlargement, pain, infections and abdominal distention.

Most patients also have liver cysts and high blood pressure, with many at risk of bleeding in the brain and other complications.

This is a chronic, progressive, and incurable inherited disease with a profound and often unrecognised impact on patients and their families and represents many of the healthcare challenges of our times such as rising healthcare costs, an ageing society and inequalities in access to healthcare.

The European commission is quite rightly acting on the main chronic diseases, such as heart disease, cancer and diabetes.

We think that chronic kidney disease should also be included in such actions, as its growing health impact is well recognised and linked to cardiovascular disease and diabetes.

However, ADPKD justifies the need for specific measures that take into account its genetic basis, effect on multiple family members, relatively low prevalence compared with the major diseases already mentioned, and its multi-faceted and variable life-long course.

Treatments to prevent or slow other forms of chronic kidney disease do not work with ADPKD. There are currently no approved medical treatments to delay the disease's progression, nor are there any European-wide recommendations or common pathways to guide care.

Although national healthcare policies are the competence of EU member states, the commission can add value in improving ADPKD care by sharing best practice and supporting both research and the creation of centres of excellence.

A European-wide network of ADPKD reference centres would generate more research and education, and establish harmonised, integrated, patient-centred care pathways.

The commission is presently supporting the establishment of European Reference Networks (ERN) for rare diseases, as originally envisaged by the directive on patient's rights in cross border healthcare.

How different diseases should be grouped within such networks remains an open question but in our view, ADPKD merits the establishment of a specific ERN, given the number of affected patients and their needs.

The commission should also support research into disease-modifying treatments to extend and improve the lives of patients with this disease and to reduce the impact of the condition on healthcare systems. [Read more]




Finding A Kdney

From Inter-mountain Catholic, Salt Lake City, By Christine Young

Catholic woman's friends rally to find her a kidney

Catholic woman's friends rally to find her a kidney

Shirley Callanan has polycystic kidney disease (PKD) and is in need of a matching kidney donor.
Callanan has been a member of the Catholic Woman’s League for almost 10 years, and serves on its board. Her friends in the CWL have rallied around her to find a donor by telling friends and setting up a Facebook page that has reached more than 3,000 people.
“Shirley is a very dear friend of mine and she is such a model of faith,” said Cece Holt, a longtime member of the CWL. “To look at Shirley, she is the epitome of good health, thanks to good nutrition and her commitment to daily exercise.”

Callanan and her husband, Tom, are members of the Cathedral of the Madeleine, and Tom is president of the Catholic Community Services board of directors.
The appeal for a donor started three weeks ago when Callanan’s doctor told her that it was time to start kidney dialysis; her kidney function is 5 percent and it should be 85 percent.
Callanan was diagnosed with PKD in 2009. PKD is an inherited disorder in which clusters of cysts develop primarily within the kidneys, resulting in reduced kidney function, which leads to kidney failure.

“My father died of PKD when he was 46, and his mother died of kidney disease in her early 60s,” said Callanan. “My sister also had PKD at age 60, and had a transplant five years ago. Our cousin was her donor; they are both doing well. Oddly, my mother lived to be almost 101.”
PKD causes high blood pressure, a symptom Callanan has had for 33 years. “My father had high blood pressure, so we were watching mine and slowly my kidney function declined,” she said.
PKD affects both kidneys; typically the onset of the disease comes between the ages of 50 and 60; Callanan is 68. The cause of the disease is unknown; there is no cure and treatment options are dialysis or a transplant.

A number of people have been screened as donors for Callanan, but so far she hasn’t been notified that there is a match.

“I would like to be a donor,” said Tom, but his blood type is incompatible with his wife’s.
The couple’s two children cannot be donors because they may carry the PKD disease.
“Having PKD, I worry about my children, my two grandchildren and my husband,” said Callanan. “I also worry about facing dialysis – it is so time consuming and I am active. I knew dialysis was in my future, but hearing it was so hard to take. I exercise six days a week and I work two days a week at the Madeleine Choir School.” 

Callanan and her husband have attended a class to find out her options for dialysis at home, which will take nine hours a day, or at a dialysis center for four hours, three days a week. [Read more]




From NewsOK, McLoud, Oklahoma

Fundraiser planned in McLoud for woman with kidney disease

When Elizabeth Monholland, of Tecumseh, was 14, she was diagnosed with polycystic kidney disease, which runs in her family. Over the years, her kidney function worsened, and doctors now say a transplant is necessary.

The average kidney transplant costs about $250,000. Even with health insurance, which will cover a portion of the costs, Monholland, 42, faces significant expenses related to the surgery. For the rest of her life, she will need follow-up care and daily anti-rejection medications, which are as critical to her survival as the transplant, according to a news release from Emily Joyner, director of communications for the National Foundation for Transplants.

For fundraising support and guidance, Monholland turned to the National Foundation for Transplants. The foundation is a nonprofit organization that helps patients raise funds to pay transplant-related expenses.

“My heart goes out to Elizabeth,” said Kay Horne, fundraising consultant. “I know she’d love nothing more than to be healthy enough to spend more quality time with her husband, children and precious grandchildren. At NFT, we’re dedicated to helping her raise the funds she needs to focus on her health, not her medical expenses.”




PKD Meetings

From PKD Foundation of Canada

Tues. Feb. 24 2015 – Vancouver Chapter Informational Meeting – Canadian PKD Symposium Recap & Chapter Brainstorming Session


Time: 6:00pm-8:00pm PST
Location: Burnaby Lake Sports Complex: Meeting Room #2, 3677 Kensington Avenue, Burnaby BC

Join us as we review highlights from the recent Canadian PKD Symposium that was held in Toronto back in November. Topics included:

Eating Healthy with PKD
Learn the Facts: The Basics of ARPKD and ARPKD
Understanding Living Kidney Donation
Update on Canadian Clinical PKD Research
Dealing with the Emotional Aspects of Living with a Chronic Disease

For the later half of the meeting, we will be joined by PKD Foundation of Canada’s Executive Director Jeff Robertson via SKYPE, to discuss current and future goals of the Vancouver Chapter with respect to advocacy, education, support, awareness, fundraising and volunteer 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.

This presentation is part of an ongoing series of two-hour informational support meetings hosted by the Vancouver 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.

Sunday, February 15, 2015

100th PKD News Post; Valentines Gift of Life; Know Kidney Problems; Wearable Artificial Kidney; High School Student Invents $500 Dialysis Device

Gift of Life

ABC 7 News, San Francisco Affiliate, by Wayne Freedman




SAN RAFAEL, Calif. (KGO) --A Bay Area musician is about to get a sweet gift for Valentine's Day.

Jesse Brewster has been dealing with a kidney illness for 20 years and he's about to get some help from an unexpected source.

When asked if she was worried about how to take care of the one she loves, Sarah Brewster responded, "I know what I'm getting mine for Valentine's Day."

Does she ever.

Sarah and Jesse pledged "for better or for worse" quite a few years ago.

Next week, right after Valentine's Day, they will take it to extremes. She is giving him one of her kidneys.

"I just feel we were meant to be in each other's lives and this is another way that's showing up," Sarah said.

The professional singer and songwriter, husband and father of two faces a life-threatening crisis -- polycystic kidney disease.

Polycystic kidney disease is the second most common inherited ailment in the world. If your parents have it, you stand a 50/50 chance of getting it, too.

Jesse's father had it and his brother died from it.

"I probably would have started dialysis later this year," Jesse said.

Instead, Sarah will take six weeks off from work to donate her kidney.

Their daughter, Isla, will get a crash course on anatomy. "We're going to tell her Daddy hasn't been feeling that well and Mommy has an opportunity to make him feel better," Sarah said.

And in this family, Valentine's Day will never be the same.

Sarah and Jesse already shared a house, a marriage and children. "First she gave me her heart. Now she's giving me a kidney," Jesse added.





Knowing Kidney Problems

From Nigerian Observer

How To Know You Have Kidney Problems

Most people are not aware of the fact that kidney diseases can be silent killers. They may not show any symptoms for a long time, till the situation becomes critical. Even young people are now prone to it. It is important to recognize the symptoms of kidney disease to catch them early. 

There are many reasons for kidney diseases. The most common causes are Diabetes and hypertension, even an unhealthy lifestyle with a high calorie diet. Certain medicines, lots of soft drinks and sugar consumption can also cause kidney damage, experts say (Martins, 2000). 

How Do You know you Are suffering From Kidney Problems? Change in your urinary function. The first symptoms of kidney disease are changes in the amount and frequency of urination. There may be an increase or decrease in the amount and/or its frequency especially, at night. It may also look more dark coloured. You may feel the urge to urinate, but unable to do so when you get to the restroom. 

Difficulty or pain during voiding. Sometimes, you have difficulty or feel pressure or pain while vomiting. Urinary tract infections may cause symptoms such as pain or burning during urination. When these infections spread to the kidneys, they may cause fever and pain in your back. 

Blood in the urine. This is a symptom of kidney disease which is a definite cause for concern. There may be other reasons, but, it is advisable to visit your doctor in case you notice it. 

Swelling: Kidneys remove wastes and extra fluid from the body. When they are unable to do so, this extra fluid will build up causing swelling in your hands, feet, ankles and/ or your face. 

Extremely fatigue and generalized weakness. Your kidneys produce hormone called erythropoietin which helps make red blood cells that carry oxygen in kidney disease, lower level of erythropoietin causes decreased red blood cells in your body, resulting in anaema. There is decreased oxygen delivery to cells causing generalized weakness and extreme fatigue(Joe, 1999). 

Dizziness and Inability to concentrate. Anaemia associated with kidney disease also, depletes your brain of oxygen which may cause dizziness trouble with concentration and so on. 

Skin rashes and itching: kidney failure causes waste to accumulate in your blood. This can cause severe itching and skin rashes. 

Feeling cold all the time. If you have kidney disease, you may even feel cold even when the weather is warm, due to anemia, pyelone phritis kidney infection may cause fever with chills metallic taste and Ammonia breath: Kidney failure increases level of urea in the blood (uraemia). These urea are broken down to ammonia in saliva causing urine-like bad breath called ammonia breath: It is also, usually associated with an unpleasant metallic taste (dysgeusia) in the mouth. 

Nausea and vomiting: The build-up of waste products in your blood in kidney disease can also cause nausea and vomiting. 

Shortness of breath: kidney disease causes fluid to build up in the lungs, also anemia is a common side –effect of kidney disease, starves your body of oxygen. You may have trouble catching your breath due to these factors mentioned (Joe,1999). 

Pain in the back or side: some cases of kidney disease may cause pain, you may feel a severe cramping pain that spreads from lower back into the groin if there is kidney stone in the ureter. Pain may also be related to polycystic kidney disease and inherited kidney disorder, which causes many fluid- filled cysta is the kidney, interstitial cystitis, a chronic inflammation of the bladder wall, causes chronic pain and discomfort. [Read more]




PKD Fundraising

From Cleveland.com, by Linda G. Kramer, City of Berea

Fundraiser helps fight rare childhood kidney, liver disease: Community Voices


Hundreds of supporters bid on auction items and dined on spaghetti and meatballs Friday night to help fight ARPKD/CHF - a rare childhood kidney and liver disease.

The fundraiser at St. Paul Lutheran Church raised $5,000 with proceeds going to the ARPKD/CHF Alliance - a national non-profit organization that raises funds for research and provides to support to families.

Jaina Cormack, 4, a preschool student at Grindstone Elementary School, and her sister, Chesley, 7 ½ months old, have both been diagnosed with autosomal recessive polycystic kidney disease (ARPKD), which occurs in only one of every 20,000 births. Congenital hepatic fibrosis involves the liver. Small cysts form on the kidneys and liver and eventually lead to organ failure and the need for transplants. There is no cure.

Jaina's and Chesley's brother, Dougie, 2, is a carrier. The disease is genetic and parents Doug and Lisa Cormack have no history of the condition in either family.

Lisa Cormack, a 2000 graduate of Berea High School, said Jaina is receiving treatment at Cincinnati Children's Hospital, where she will receive a liver transplant when the time comes, and at University Hospitals in Cleveland, which is treating the kidney portion of the disease. Both Lisa and Doug have tested positive as a match for a kidney transplant. Those won't happen until Jaina is older, probably around 10 for the liver transplant and in her late teens for the kidney transplant.

In the meantime, Jaina is on a low sodium diet and is on high blood pressure medication. "We're all eating much healthier now," Lisa said. Jaina's kidneys are enlarged as was the left side of her heart. Doctors monitor her on a regular basis.

Insurance is covering Jaina's treatments but would not cover genetic testing for the rest of the family. The Women's Group at St. Paul Lutheran Church, where the Cormacks are members, held a fundraiser to take care of that expense. In fact, the Women's Group cooked and served the pasta dinner on Feb. 6. Doug Cormack, who is in the landscaping business, said more than 100 baskets were donated for the reverse raffle. For a silent auction, Mayor Cyril Kleem donated a baseball bat autographed by Hank Aaron and a signed copy of Cleveland Brown Don Crockroft's book, "The 1980 Kardiac Kids." The mayor's brother, Anthony Kleem, an Americana artist, donated a piece of artwork.

Jaina is a very brave little girl, her mother said.

"She has been thrown into this medical world of doctor appointments, blood draws and ultrasounds and comes out with her head held high - and a sucker or sticker in hand," said Lisa, who is on leave as a music teacher with the North Ridgeville Schools.

"The worst part about childhood disease is the fact that her childhood memories will be filled with good times and happy adventures, but always with the underlying knowledge that she is different and sick despite how she may look to others," Lisa said. "It is hard has a parent to love her so much but not be able to fix this for her."

For more information on ARPKD, visit www.arpkdchf.org.




From MK Web, United Kingdom

GO PURPLE: Milton Keynes friends support purple kidney campaign for families

kidney


Two friends from Milton Keynes are encouraging the area to ‘Go Purple’ this March for Kidney Research UK.

Rosalie Osborne and Irona Dougherty are backing Kidney Research UK’s ‘Go Purple’ campaign which aims to raise vital funds for research into kidney disease, which doesn’t have a cure.

Both have first-hand knowledge of kidney disease. Rosalie's daughter in law Helen and grandson Alex suffer from a type of kidney disease called Polycystic Kidney Disease (PKD).

PKD is a genetic, hereditary condition where cysts form on the kidneys causing the kidneys to slowly stop working properly.




PKD Research

From MedScape, by Meg Barbor



Dr Gura helps assistant John Kundzins don a demo version of the wearable artificial kidney (Source: Stephen Brashear)



NEW ORLEANS — A wearable artificial kidney (Xcorporeal Inc.) enables greater mobility for dialysis patients, reducing their time in the chair and improving their quality of life, according to research presented here at the American Society of Nephrology 35th Annual Dialysis Conference.

The device, invented by nephrologist Victor Gura, MD, from the David Geffen School of Medicine at the University of California in Los Angeles, is currently undergoing its first human trial in the United States. Human clinical trials conducted in Italy and London have already been successfully concluded.

"Unmet needs in dialysis have remained relatively unchanged for the past 5 or 6 decades," Dr. Gura pointed out. There is still a need to reduce mortality, improve quality of life, reduce cost, improve access, and simplify care, he said.

Although better technology has been developed to treat patients with end-stage renal disease, this has not translated into better patient outcomes, he stressed.

To improve quality of life for dialysis patients, pill burden and time in the chair need to be reduced, dietary restrictions need to be less stringent, and patient fatigue needs to be addressed. "The day after dialysis, patients might have a life, but then the following day, they're on dialysis again. This is not quality of life," Dr. Gura explained. Patients may also suffer from sleep apnea, fear, and depression.

"When we tell a patient that dialysis will be necessary, the human reaction to hearing those words is, uniformly, devastation," he said.

Patients in need of dialysis have myriad questions about their quality of life, life expectancy, cost, and assistance. "We as a nephrology community are not doing very well, and the answers that we have for this conundrum of human suffering are not good enough," he said.

The artificial kidney was developed to allow patients to be more mobile during a dialysis session and to go about some of their daily activities while the device runs. Currently, patients are tethered to a cumbersome machine for 3 to 4 hours at a time, several days a week.

Miniature Battery-Powered Device

The dialysis device slowly and continuously removes fluids from the body at the same pace as healthy kidneys. When fluid is removed from a patient too quickly, the patient will crash, Dr. Gura noted. "If we remove it nice and slowly, as the kidneys do — over 24 hours instead of 3 hours — then mortality and morbidity are improved."

The miniature battery-powered dialysis device is worn like a tool belt. It is connected to the patient by a catheter, weighs about 10 pounds, and uses only 400 cc of sterile water. "Because we have a recirculating loop, we have 24/7 use of only 400 cc of water," he explained. Blood is filtered by our kidneys 24 hours a day, 7 days a week. "So if you only filter your blood 9 to 12 times a week, it doesn't work too well."

"We know that quality of life is better when we dialyze more frequently," Dr. Gura said. However, he pointed out, there are logistical obstacles to frequent dialysis. Although the number of patients in need of dialysis continues to grow, there is a lack of funds to pay for treatment and a lack of space in clinics.

"Only 10% of patients will dialyze at home," he reported. "If 90% of dialysis patients will not dialyze at home, how are they going to dialyze every day? Are we going to build twice the units to house them? Do we have the nurses or the capital to do that? The answer is no."

If we have less fluid to remove, less hypotension, a lower pill burden, and less hospital use, we could save some money, he said.

"Dialysis revolutionized medicine by showing us that even the failure of a vital organ can be replaced by appropriately timed medicine. And it didn't require a kidney transplant; a machine could do it," said session moderator Eli Friedman, MD, from the SUNY Downstate Medical Center in Brooklyn, New York.

"Dialysis, which first was cumbersome and difficult and required a surgeon, can now be moved to a wearable device, and that's pretty exciting," Dr. Friedman told Medscape Medical News.

When body fluids are at normal levels, health conditions such as pulmonary edema and hypertension will likely be improved or completely eradicated. And because users of the dialysis device receive continuous hemodialysis, patients can potentially be relieved of dietary and fluid restrictions and of the binders that control phosphorus and potassium levels.

"Daily continuous dialysis is beneficial if you can find a way to do it," Dr. Gura said. "In 5 years, I hope to see the national use of this device."




From Inquisitr, Montreal, Canada


Inventor Anya Pogharian And Her Dialysis Machine

A 17-year-old high school student, Anya Pogharian, developed a high school science project which “could end up changing the way dialysis care is delivered,” according to a CBC report.

The teen, who hopes her invention will one day be used overseas, poured over dialysis machine owner’s manuals over the internet before developing her own prototype utilizing simple technology which cost a mere $500 to develop. Compared to dialysis machines which currently cost around $30,000, Pogharian’s is essentially an inexpensive homemade alternative. She said she wanted to find a way to improve the procedure, as it “takes a lot of energy” out of the patients.

“It takes a lot of energy out of them (…) They’re very tired after a dialysis treatment. (…) You wouldn’t have to make your way to the hospital, which is a problem for a lot of patients. It’s not necessarily easy to make your way to the hospital three times a week, especially it you have limited mobility.”

Dialysis, a process which is typically used to treat those afflicted with kidney disease, is the process of cleaning waste from the blood. The entire process takes roughly four hours, twice a week. Anya indicated that ten percent of patients residing in India and Pakistan requiring treatment “can’t afford it or can’t have it in any way.”

Pogharian, who spent 300 hours on her new invention, chose to work on the medical contraption after finding inspiration in volunteer work at a hospital’s dialysis unit.

While the young inventor has been offered a summer internship by Héma-Québec to test out her new invention with real blood, she’s also earned what CBC referred to as a “slew” of awards and scholarships. Louis Thibault, director of applied research at Héma-Québec, said that the entire “population will benefit” from her invention due to the reduced cost of medical care to those requiring dialysis.

“All the population will benefit from that kind of instrument that will reduce medical care cost, hospitalization stays. Basically, it’s a great idea.”

The dialysis machine’s teen inventor said that she’s currently focused on doing well on her CEGEP midterm exams.

 

Sunday, February 8, 2015

Reverse Transplant Tourism; HOPe for a Cure; Eliminating the Need for Dialysis by 2025, Ranking Dialysis Centers

Kidney Transplant

From The Blade, Toledo, Ohio, by MARLENE HARRIS-TAYLOR


UTMC surgeon says program will save money in long run

Dr. Michael Rees, a University of Toledo Medical Center kidney transplant surgeon, has spent more than a decade developing ways to increase the number and quality of kidney transplants in the United States through a program he founded, the Alliance for Paired Donation.

Now Dr. Rees, who is also a professor of urology and pathology at the former Medical College of Ohio, is taking his expertise to focus on finding people in developing countries who don’t have the financial means for transplants, while increasing the number of kidneys available for U.S. patients.

Dr. Rees calls his new program reverse-transplant tourism.

A husband and wife from the Philippines, Jose and Kristine Mamaril, are the first participants to benefit from this innovative system that allowed Mr. Mamaril to receive a life-saving transplant in Toledo from an American donor in Georgia. His wife, who has a coveted blood type, reciprocated by donating a kidney to a man in Minnesota who previously would have had to wait years for a match.

According to the website Kidneylink, the average wait for people who need transplants and lack matching donors from their families varies between three and five years.

“In rich countries there’s not enough kidneys for people who have kidney failure, but there is plenty of money to pay for all the transplants. In poor countries, there’s lots of people that need kidney transplants and lots of available donors, but in poor countries they don’t have enough money,” Dr. Rees said.

This new program breaks down some of those barriers and helps bring people with the universal Type O blood into the U.S donor system, while helping someone from another country get access to free medical care.

One year of a kidney patient’s dialysis costs Medicare about $90,000, or nearly triple the $33,000 cost of a kidney transplant, Dr. Rees said. He argues his donor-matching system will ultimately save the federal government and private insurers money because it moves patients with kidney failure, also known as end-stage renal disease, off dialysis sooner.

“It is what health-care reform is all about. It increases access, so now poor people are getting access to transplantation. It reduces the cost of care and it improves the quality of care because a transplant’s a lot better than dialysis. The average person who gets a kidney transplant lives 10 years longer than if the same person had they remained on dialysis,” Dr. Rees said.

‘A miracle’

Mr. Mamaril, 31, had nearly given up hope of ever being able to afford a kidney transplant at home in San Pablo, in the Philippines’ Laguna province. He told his wife they could afford neither the transplant nor dialysis and tried to persuade her to give up on him and save their meager money to take care of their 8-year-old son.

The Mamarils are not poor by Philippine standards. Both college-educated, she is an accountant for Dunkin’ Donuts in Laguna while Mr. Mamaril had been operating a taxi business that transports passengers using motorcycles with trailers.

Everything changed for the family when he began to feel weak and dizzy in October, 2013 — a symptom of his kidneys failing. By the following January he started dialysis, but the couple had to borrow money from relatives to pay for it.

Mr. Mamaril, often speaking through an interpreter, said he worried constantly about how to pay for his expensive medical care. Dialysis or a transplant cost 10 times the family’s income, Dr. Rees said, and the Philippines has no public health system to help pay for transplants. [Read more]




PKD Fundraising

From PKD Foundation of Canada, Hamilton Chapter

Hamilton Chapter Fundraiser: HOPe For a Cure!

MAR
14
Time: 7:00pm - 11:30pm
Location: Royal Hamilton Light Infantry - Veterans, 1353 Barton Street E, Hamilton ON L8H 2W2





The PKD Foundation of Canada – Hamilton Chapter is proud to be hosting ‘HOPe For a Cure’! An evening featuring live music, swing dancing, silent auctions and fundraising fun.

PKD is one of the most common, life-threatening genetic diseases in the world; affecting approximately 66,000 Canadians and 12.5 million people worldwide. There is no treatment or cure for this disease. PKD will threaten the lives of every generation of every afflicted family until one is found. It equally affects men, women and children – regardless of geography or ethnic origin. The mission of the PKD Foundation of Canada is to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for PKD.

EVENT DETAILS:

7:00pm: Doors

7:30pm: Swing dance lessons

8:00pm: Live music featuring The Jumpin’ Jive Band

TICKETS:

$15 + $1.89 service fee in advance available here.

$20 at the door.

Be sure to join the official Facebook event here for up to date information on silent auction items, sponsorship opportunities and more!

This event is generously sponsored by The Jumpin’ Jive Band & David Trinh DJ Services.

Additional Sponsorship opportunities still available. Please contact us at hamiltonchapter@endpkd.ca for details.




Living with Dialysis

From Trinidad Express Newspapers, By Dennis Webster

Eliminating the need for Dialysis by 2025

According to the International Diabetes Federation, an organisation of over 230 national diabetes associations in 170 countries and territories, there were 135,600 cases of diabetes in Trinidad and Tobago in 2014. Presently there are also 300,000 people living with hypertension.
Research estimates that approximately 45 per cent of diabetics will develop kidney failure as well as about 15 per cent of people living with hypertension. This means that roughly 106,020 people will eventually require dialysis treatment. According to the National Kidney Foundation, you can expect to lose approximately one per cent of kidney function every year due to the natural aging process. This is compounded if you are living with diabetes and hypertension.

The US has about 300 million residents and presently dialyses about 450,000 people per year at a cost of about US$90,000 per person for a total of over 40 billion dollars annually. Patients on dialysis generally have a life expectancy of five-ten years. Many patients however have lived well on dialysis for 20 or even 30 years.

All living beings have something called genes, thousands of them. Our genes and their genetic coding (instructions) determine things like our appearance and how we survive. Everything is set up in our body in a specific order. Gene mutations (changes to the order) can occur leading to disease. Genomics, basically the study of genes, has found that changes in this order can lead to the development of certain diseases, one being kidney failure. Dr David Moskowitz of GenoMed, a company that searches for these anomalies has found that treatment of one such gene defect with the use of an inexpensive oral medication can stop the progression of kidney disease to ESRD (End Stage Renal Disease) requiring dialysis. His research has shown that 90 per cent of kidney failure can be prevented at a considerable cost reduction to the health care system while at the same time improving quality of life. GenoMed hopes to eliminate the need for dialysis by 2015. Their outcomes have been published and peer reviewed.

What is required according to Dr Moskowitz is that treatment be started when one’s creatinine level is less than or equal to 2mg/dl with two to three fairly inexpensive medications. Creatinine is a chemical waste product produced by your muscle metabolism and to a smaller extent by eating meat. Your healthy kidneys get rid of creatinine and other waste products (including excess water) in your urine. Checking the creatine level in your blood helps determine how well your kidneys are working. Normal blood creatine levels range from 0.7- 1.3 mg/dl. If you are living with diabetes and or high blood pressure and would like to get more information on how Dr Moskowitz’s research can help you or see his results, you can call 683-6145 or email me at gprl3012@gmail.com.





From The Ledger, Lakeland, Florida, By Robin Williams Adams


Kidney patients can judge by the stars when they compare dialysis centers on Medicare's website, checking how many stars a center gets as its grade.


Medicare has added star rankings to Dialysis Facility Compare. The new system gives a one-to-five-star rating, grades the agency said are based on information about the quality of care and services a facility provides.

Those with five stars are in the top 10 percent and those with one star are in the bottom 10 percent.

None in Polk got five stars.

Davenport Dialysis Center in East Polk, which received four stars, ranked highest among Polk County centers. Four stars means a facility, although not in the top 10 percent, is in the next 20 percent.

The lowest ranking — one star — went to RAI Care centers in Winter Haven, Lake Wales and Haines City.

Lake Vista Dialysis in Lakeland, Lake Wales Dialysis, Watson Clinic Kidney Center in Lakeland and Winter Haven Dialysis each got two stars.

Three-star recipients in Polk are Bartow Dialysis, Lakeland Dialysis and Lakeland South Dialysis.

Three-star facilities are in the middle 40 percent of dialysis centers judged.

Information wasn't available for Winter Haven South Dialysis.

Two dialysis centers near Polk County, Poinciana Dialysis and Plant City Dialysis, got three stars and two stars, respectively.

Centers for Medicare and Medicaid Services officials encourage dialysis patients to talk with their doctors and the facilities about the ratings.





PKD Research

From Melanoma News Today

Ipilimumab Efficient in Kidney Transplantation Patients With Metastatic Melanoma

shutterstock_113697745


In a study titled “Successful Administration of Ipilimumab to Two Kidney Transplantation Patients With Metastatic Melanoma”, a team of researchers from Johns Hopkins University School of Medicine and Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD, reported that ipilimumab was successfully administered to two patients suffering with metastatic melanoma, who had already received kidney transplantation.

Ipilimumab (Yervoy; Bristol-Myers Squibb) is an anti-CTLA-4 receptor antibody, which inhibits the connection of the receptor to its ligand and allows the patient’s immune system to recognize and destroy tumor cells, therefore increasing the naturally occurring immune response.

The U.S. Food and Drug Administration have approved this immunotherapeutic for the treatment of patients with metastatic melanoma. However, for patients who suffer from autoimmune disorders or receive organ transplantations, available therapeutic options are significantly reduced.

The first patient treated in this clinical study was a 72-year-old man who received kidney transplantation for end-stage kidney disease due to hypertension, and who 8 years later was diagnosed with a ≥ 8 mm ulcerated melanoma on his left chest. After receiving a left axillary node dissection, the patient was treated with surgery and radiotherapy. However, 3 years later he was diagnosed with an unresectable left chest wall metastases and a new liver lesion, and subsequently initiated ipilimumab treatment. “The patient tolerated therapy well and had decreased abnormal metabolic activity corresponding to subcutaneous soft tissue lesions in the left lateral and anterior chest and near resolution of the previously seen abnormal [18F]-fluorodeoxyglucose (FDG) uptake in the left lobe of the liver”, the authors write in their study.

The other patient was a 58-year-old man who received kidney transplantation for advanced kidney failure caused by polycystic kidney disease. Seven years after the transplant, he was found to have a 4.2 mm nodular melanoma on his forehead, which was later diagnosed as BRAF and C-KIT wild type. After wide local excision, superficial parotidectomy and right neck dissection, his melanoma was found to be present in four different lymph nodes, and one year later his cancer was found to be metastasized. He then initiated treatment with ipilimumab, which after the fourth dose was found to initiate disease regression in several areas, including a decrease in size and FDG avidity of multiple bilateral pulmonary lesions.

“Although further study in a larger patient cohort is required, these two cases illustrate that ipilimumab may be a safe and effective option for patients with metastatic melanoma who have previously undergone solid organ transplantation. This is of particular importance given that the incidence of melanoma is higher among solid organ transplantation patients than in the general population”, the authors conclude.

Sunday, February 1, 2015

Pediatric PKD; Problems of High Calcium & Phosphorus; Exploring Cat Genome for PKD Links; PKD Education & Treatment Needs

Living with PKD

From The Beach Reporter, Beach Cities, CA

Pediatric Urology and Nephrology Issues: More Common Than You’d Think

Deepak Rajpoot, M.D., medical director, pediatric nephrology, Miller Children’s & Women’s Hospital Long Beach 

Pediatric urological and renal conditions constantly present parents with challenges, not only because the symptoms of these conditions are mostly hidden, but also because parents don’t realize how common some of these conditions can be.

Pediatric urological and renal conditions are issues involving a child’s urinary tract and reproductive organs, which include kidneys, bladder and urethra.

There are an abundance of different urological and renal conditions out there but some of the more common conditions in kids are renal tubular acidosis, polycystic kidney disease and urinary tract infections.

Renal tubular acidosis (RTA) is a condition that involves an accumulation of acid in your child’s blood due to a failure of the kidneys to remove excess acid from their blood into their urine. Some of the most common symptoms of RTA are pain in the back or side that spreads to the lower abdomen, pain while urinating and decreased urination. Some of the factors that can cause RTA are too much acid in the body, high blood calcium or the use of certain prescription drugs.

Polycystic kidney disease (PKD) is an inherited disorder in which many fluid-filled cysts develop in your child’s kidneys. PKD is a genetic disorder that affects more than 500,000 people in the U.S. If one parent has this disorder, the chance of passing it down to your child is 50 percent. Other health issues that could develop if your child has PKD are high blood pressure, back pain and headaches.

Urinary tract infections (UTI) are bacterial infections that develop in your child’s urinary tract. UTIs are the second most common type of infection in the body - accounting for more than eight million visits to health care providers each year. Some of the most common symptoms of a UTI are a burning sensation when urinating, passing frequent, small amounts of urine and strong-smelling urine. UTIs can be prevented by not holding urine in for long periods of time and by drinking lots of water each day to keep the bladder active and bacteria free.

Even though these are three of the most common conditions, every pediatric urological and renal condition makes itself known in different ways. Some of the most common signs of a urological or renal condition are:


Pain during passing urine

Frequent bed wetting

Blood in urine

High blood pressure

Fever

Swelling around the eyes, face, feet and ankles

Significant increase in the frequency of urination


If any of these signs present themselves some common tests that are performed on kids to help diagnose their urological or renal conditions include:

VCUG - voiding cysto urethrogram

Ultrasound

MAG3 scan

When it comes to pediatric urological or renal conditions two things that parents can do to help their children: be aware and communicate. Remember kids might not be able to communicate what is going on with their body or they might be scared. If parents are aware of these signs they can ensure their child gets the care they need sooner.

Later this year, a comprehensive Pediatric Urology & Nephrology Center will open to help future patients navigate their complex medical conditions. Miller Children’s is one of a few select children’s hospitals in Southern California to ensure these program experts are constantly connected, which in turn will improve patient outcomes in the prevention, diagnosis and treatment of urological and renal conditions. Miller Children’s continues to provide high-quality patient care and carry on innovative research in all areas of urology and nephrology.

If your child presents signs of any urological or renal condition, call your pediatrician as your child may require pediatric urologist or nephrologist.

For more information, visit MillerChildrens.org or call I 800-MEMORIAL.




From Renal And Urology News, by Natasha Persaud, Digital Content Editor
Early Death in Dialysis Patients Linked to High Calcium, Phosphorus

Dialysis patients who have high concentrations of serum calcium and phosphorus are at elevated risk of dying early, a new study finds. Whether controlling hypercalcemia andhyperphosphatemia would improve outcomes remains to be seen, however, and should be assessed by future studies.

The Centers for Medicare and Medicaid Services (CMS) recently finalized a rule that includes uncorrected serum calcium greater than 10.2 mg/dL as a quality measure within the Quality Incentive Program for end-stage renal diseasestarting in 2016. In the new study, researchers found that both uncorrected and corrected serum calcium levels of 10.2 mg/dL and above identified patients at increased risk of premature death.

The team led by Matthew B. Rivara, MD, of the Kidney Research Institute at the University of Washington in Seattle analyzed data from 119,010 hemodialysis patients and 10,066 peritoneal dialysis patients treated at DaVita, Inc., facilities from July 2001 to June 2006.

Both low and high levels of uncorrected calcium were associated with excess mortality, according to results published online in the Journal of the American Society of Nephrology. Adjustment for serum albumin lessened the association for low serum calcium (less than 8.5 mg/dL) and strengthened the association for high serum calcium of 10.2 mg/dL and above.

Serum phosphorus levels of 6.4 mg/dL and greater were also linked to increased mortality, the researchers found. The dialysis method did not appear to influence any of the results.

In dialysis patients, serum calcium can rise to high levels due to hyperparathyroidism, use of dialysate with calcium concentrations above 1.5 mmol/L, or use of medications such as calcium-containing phosphate binders. All of these are modifiable in clinical practice.

According to the investigators, high serum calcium could contribute to adverse clinical outcomes in many ways. It might promote vascular calcification, leading to atherosclerosis; alter smooth muscle tone, leading to hypertension; accelerate cell death; and impair white blood cells, promoting infection-related complications.

Hyperphosphatemia, likewise, may contribute to vascular calcification and/or infection via accelerated cell death and reductions in T lymphocytes.

Another possibility is that serum calcium is simply a marker for a “complex interplay” between phosphorus, parathyroid hormone, vitamin D and its metabolites, and fibroblast growth factor 23, according to the researchers. In that case, lowering serum calcium may not improve outcomes. [Read more]



From The PharmaLetter

Long-term solutions needed for kidney disease, says EAF report

Greater education and support for non-specialist health care professionals is needed to ensure the accurate diagnosis of autosomal dominant polycystic kidney disease (ADPKD), a chronic, progressive, inherited disease in which fluid-filled cysts grow in the kidneys and liver, according to a new report released today.

The European ADPKD Forum (EAF), an international, multidisciplinary panel of experts from the fields of nephrology, hepatology and genetics, has produced the report titled,Translating Science into Policy to Improve ADPKD Care in Europe. It details the role of health care professionals to improve the development and delivery of ADPKD care, and provides an overview of the current management of ADPKD throughout Europe.
VARIATION IN STANDARDS

The publication highlights the variation of clinical standards throughout Europe and identifies the need for greater education and support for non-specialist health care professionals to ensure the accurate and appropriate diagnosis and treatment of ADPKD and ADPKD-related symptoms. These include pain, infections of cysts and the urinary tract, kidney stones, blood in the urine, and abdominal distension. ADPKD patients may also present with cardiovascular symptoms as they are at high risk of developing hypertension and cardiovascular disease. The report also highlights that polycystic kidneys cause kidney failure in the majority of patients, and that delaying the progression of the disease would improve patient outcomes and cost efficiencies for health services.

Richard Sandford, consultant clinical geneticist at Addenbrooke’s Hospital, Cambridge, UK, and co-chair of the EAF, said: “The management of ADPKD is currently based on the general management of declining renal function and the symptoms associated with the condition. Disease specific treatments are not currently available. Care pathways are fragmented across the EU and specialist knowledge of the disease itself remains limited. Innovative, long-term solutions should be sought to improve patient outcomes, and meet the financial and societal challenges that ADPKD represents.”

RECOMMENDATIONS

The following recommendations, captured in the Brussels Declaration on ADPKD which is being launched today alongside the report as a stand-alone EU policy action plan, aim to help address the existing unmet needs and to promote access to high-quality care for all patients with ADPKD in Europe:

The implementation of tiered care: Governments should support the development of a nationally coordinated, tiered approach to ADPKD care in collaboration with experts, patient advocacy organizations and other stakeholders, in line with the European Commission (EC) policy priority to address health inequalities

The establishment of specialist ADPKD centers: An expanded European Reference Network of specialist ADPKD centers should be established to facilitate further research and harmonized, integrated, patient-centered care pathways, ensuring best practice and consistency of care
Supporting therapeutic innovation: The EC and national governments should support research to develop disease-modifying treatments with the potential to maintain quality of life, delay renal decline and improve life expectancy among patients, and to reduce the economic impact on healthcare systems

Prioritization of prognosis: Governments and healthcare providers should support the routine implementation of methods to assess prognosis in ADPKD to inform clinical decision making, research and innovation

Empowering patients: All stakeholders, including the European Commission, national governments and healthcare providers, should support efforts to better inform individual patients and families affected by ADPKD, and to involve patient organizations in policy making regarding healthcare planning and delivery related to ADPKD

Engaging patients in health technology assessment: Health Technology Assessment (HTA) organizations should seek to engage ADPKD patient organizations in their assessments in order to consider their unique knowledge about the impact of living with ADPKD, and their aspirations for new treatments, according to the HTA International Quality Standards for Patient Involvement in HTA [Read more]



From The Hindu, Chennai, India

Kidney disease remains a death call in India: K.V. Johny

Kidney or renal transplantation has become a fairly common procedure, with several hospitals across the country equipped to perform live and deceased donor transplantations.

In 1971, when K.V. Johny, one of India’s first nephrologists, started performing the procedure, the situation was very different.

Dr. Johny, who was then with the Christian Medical College, Vellore, is credited with performing the first successful renal transplant in the country along with his colleague, M Mohan Rao. The patient, Shanmugam from Coimbatore, had Adult Polycystic Kidney Disease and received a kidney from a relative

Recalling the first surgeries, he said, “We needed two operating theatres, one for the donor and one for the recipient. Theatres were scarce, so all operations were at night”.

“After the procedure, we would sleep next to the patient until we were sure the kidney had been accepted,” Dr. Johny said. In the first year, they performed 100 procedures.

Dr. Johny studied nephrology in Australia and was the first person recognised by Madras University as a nephrologist. Since the 1970s, kidney transplantation has come a long way. But, Dr. Johny says, there is still a long way to go.

With the burden of kidney disease in the country increasing, and 95 per cent of the patients dying before they get any medical care, Dr. Johny termed kidney disease in India ‘a death call’.

Dr. Johny, on Sunday, delivered the Krishnan Ang TANKER Foundation Endowment Lecture at the TANKER Annual Charity and Awards Night. Dr. Johny, Sreejith Parameswaran, nephrologist, JIPMER; Sunder Subramaniam, founder and chairperson, Freedom Trust; and Sunil Shroff, founder, Mohan Foundation, were presented awards for their contributions.

Dr. Johny, who performed the first successful renal transplant in India, said much remains to be done in the field



PKD Research

From Examiner.com, by Eve-Angeline Mitchell

99 Lives project looks for secrets of certain diseases inside the genes of cats

The 99 Lives project is looking for genetic material from 99 domestic cats, to see what secrets they reveal about certain diseases common to both humans and cats.

The 99 Lives project is looking for genetic material from 99 domestic cats, to see what secrets they reveal about certain diseases common to both humans and cats.

Cats help us in all sorts of ways. Having a cat is often therapeutic, because stroking them and listening to them purr relieves stress. They also help us catch bugs indoors, and they'd even clean our plates for us if we'd let them. Now, with gene sequencing, cats can help us fight some diseases that affect not only cats, but people as well.

The project is called 99 Lives, and its goal, according to a Jan. 24, 2015 article in The Guardian, is to find out the exact genetic profiles of 99 domestic cats. The researchers hope that these genetic profiles will result in our ability to develop new treatments, appropriate for cats and humans, for several different diseases.

The feline genome sequence project was completed over the summer of 2014, thanks to an Abyssinian cat named Cinnamon, along with a couple of others. That's the research that concluded domestic cats are still partly wild.According to iO9, many parts of the feline genome remain unchanged since cats first started living with humans. This research is what's helping to fuel 99 Lives.

According to the 99 Lives page on The Lyon's Den website, the project is a public research project. They have a list of requirements and limitations for sending samples, too. Specifically, they want the ovaries or testicles of feral or stray cats. They believe that this is the best way of getting a true representation of various regions. They do not want tissue from purebred cats or cats that are related to each other.

Potential participants need to contact Dr. Leslie Lyons at the University of Missouri when they have 30 samples. Based on this information, it's veterinarians, who work with trap-neuter-return caregivers, who will be most able to help out 99 Lives.

The Guardian says that one of the reasons Dr. Lyons (and others) is so interested in this is because she's one of the researchers who discovered the genetic mutations that lead to polycystic kidney disease (PKD). PKD afflects both humans and cats, and the mutations that cause it occur on the same gene in both humans and cats.

Lyons said that there's a lot of variation in the progression of PKD in humans and cats. She hopes that, once we have a better understanding of how the gene mutation works, we'll be able to design drugs to combat it that are suitable for humans and cats. That won't be limited to PKD or HIV and FIV, either, but also diabetes, asthma, and even some causes of blindness.