Living with PKD: Columbus, IN, New Zealand, Walk for PKD: Milwaukee, Dialysis Membrane Technology

Living with PKD

From The Republic, Columbus, IN, by Brian Blair

Fighting together: Mom, daughter wage battle against disease

Suffering through physical weakness, weariness and memory fog amid an incurable disease is one thing.

But painstakingly waiting is quite another — waiting for news that another person will grant the gift of renewed life with a donated organ.

Or the terrible-news-turned-redeeming-sacrifice that one who has died was altruistic enough to sign up for organ donation.

Columbus resident Debbie Patterson, 57, needs a kidney transplant as soon as possible. Thirty-year-old daughter Casey Durnil, also of Columbus, will need one soon enough.

Both have progressive polycystic kidney disease. It causes numerous fluid-filled cysts to grow in the kidneys, reducing kidney filtering function and eventually leading to organs failure, according to the National Kidney Foundation.

The mother has only 15 percent kidney function. The daughter only 12 percent, although she must make other medical-related adjustments before she can be considered for a transplant.

“There’s got to be at least one person out there who has an O (blood type) kidney for my wife,” said Gerry Jones, Patterson’s husband of seven years. “So I pray that someone else has the heart and soul to care enough to donate a matching one for Debbie. This is my prayer every minute of every day.”

Patterson recently sat in their 31st Street living room with a textbook-thick binder filled with medical background and notes, much of it highlighted in yellow marker, about her and daughter’s condition.

The mother suffered through back pain at work just that day from problems in her left kidney. There’s not much she can do for such obstacles other than taking acetaminophen.

Patterson was diagnosed in March 2010. Doctors diagnosed Durnil a year and a half later.

Durnil could begin daily dialysis within a few weeks as a step to help her. Both still work full-time at Phoenix Quality Management, a supply chain services company in Walesboro.

But Patterson notices regular reminders that her kidneys are struggling. Partly because she is low on absorption of iron and other vitamins, she couldn’t even muster the strength to drive a small yard-sale stake into the soft, rain-soaked ground of her lawn recently. But still, she managed to laugh at her plight.

“What else am I going to do?” Patterson asked. “Sit here and cry?”

She has been on the organ-donor waiting list for a year amid a process that sometimes stretches to five years.

She knows the number of people in the United States waiting for a kidney is more than four times greater than the number of transplants.

The United Network for Organ Sharing shows that in 2016, there were 19,060 kidney transplants nationally. And there are currently 96,966 people in the United States on the waiting list for a kidney.

The network also shows that kidneys rank as the most in-demand organ for transplants, far outpacing the need for other organs such as livers, hearts, and lungs, needed in that order.

Dr. Jennifer Bucki, Patterson’s nephrologist with Indiana Kidney Specialists in Indianapolis, said she has straightforwardly laid out the facts about the average wait for a new kidney, and other factors affecting Patterson’s situation “hopefully without being too blunt.” But the physician also mentioned that her patients also must remember that she has seen firsthand a number of transplant success stories among those she has treated.

Bucki complimented Patterson’s upbeat ways amid substantial challenges.

“She has a good attitude, even though she has experienced her share of ups and downs, including seeing changes in her body, and changes in her endurance as her disease has become symptomatic,” Bucki said.

The specialist supports publicity about cases such as Patterson’s.

“It helps the community become involved not only in thinking about their own health, but also with them thinking about becoming organ donors,” Bucki said.

Jones, a semi-truck driver in Indiana and Kentucky, soon will spread the word about needing a kidney donor by posting a message on his vehicle as he roams the interstates.

“There’s got to be at least one person out there (who’s a donor match),” said Jones, who is the wrong blood type to be a donor.

A number of people have tried to donate. But none who were a blood type O match made it through the initial phone-screening interview as a viable donor candidate.

So they wait. And hope. And pray, along with others. [Read more]

From Stuff, New Zealand

Kiwi basketball great Kenny McFadden diagnosed with serious kidney disease

Kenny McFadden (R) played a huge part in Steven Adams' development.


Kenny McFadden, Kiwi basketball great and mentor to Steven Adams, has been struck down by a serious kidney disease.

The American-born former Wellington Saints player-coach was rushed to hospital several weeks ago with acute respiratory failure.

While he managed to pull through following a night of "extreme medical intervention", McFadden was subsequently diagnosed polycystic kidney disease, a genetic disorder that requires regular dialysis until a suitable kidney donor can be found, his friends say.

For more than 30 years McFadden has made a significant impact on basketball in this country as both a player and coach.

However, a Give A Little page set up by friends and colleagues of his partner, Angelia Beamsley, said the illness has left him unable to work.

"This is placing heavy financial strain on him and his partner which on top of regular visits to the hospital is making a tough time that much harder," a statement on the page said.

"By creating this page we are attempting to raise funds to help with his quality of life and to ease the burden on his partner and family."

After playing for Washington State University in the USA, McFadden moved to Wellington in 1982 where he enjoyed great success with the Saints.

He led the team to seven finals appearances, winning five NBL titles between 1982 to 1988.

Following his retirement in 1996, McFadden became heavily involved with junior player development, founding his own hoops academy in Wellington as well as coaching the Junior Tall Blacks to the under-19 World Championships in 2009.

It was through his coaching work that he met Adams, and he went on to play a key role in the Kiwi's miraculous rise to the top of the basketball world with the NBA's Oklahoma City Thunder.

McFadden first took Adams under his wing as a 14-year-old who had been shifted by an elder sibling to the capital from Rotorua in order to get his life back on track.

He has been the young man's mentor ever since, refining his skills early on at his academy and then later providing the guidance and advice as the young man headed stateside to chase his dreams.

PKD Walk

From Milwaukee Journal Sentinal

Milwaukee Walk for PKD:

Event is 2.5 mile benefit for polycystic kidney disease, 10 a.m. Sept. 10. Registration begins at 8:30 a.m. Bayshore Town Center, 5800 N. Bayshore Drive, Glendale. Registration is free; donation requested. walkforpkd.org/milwaukee

Dialysis Research

From WOW News, Malaysia

UTM researchers develop haemodialysis system using membrane technology

Statistically, it is estimated that one in twelve Malaysians has kidney failure and millions more are at risk. Commonly, these patients need dialysis treatment when they reach the final stage of kidney failure or typically known as the end-stage renal failure (ESRF), where they lose 85% to 90% of their kidney function.

In Malaysia, the number of dialysis patients keeps increasing with the estimation of 5,000 new cases of ESRF being reported each year. The statistics from the National Kidney Foundation Malaysia reveals worrying figures where the total number of haemodialysis patients had increased from 12,182 patients in 2005 to 38,157 patients at the end of 2016. In fact, with he right projection there will be 43,000 haemodialysis patients altogether by the end of 2017.

Every year, the government allocates RM50 million to cater to the cost of treatment of around 38,000 ESRF patients. However, only 35,580 patients from that number undergo haemodialysis treatment. Out of the 35,580 patients, government hospitals are able to cover the expenses for only 8,000 patients. The remaining patients have to solely rely on the subsidy from the Government and NGOs. According to local sources, the amount paid by each patient for every session is RM162 (around USD$38 with government subsidy), and part of the amount comes from the cost of the haemodialyser. It is known that the market price for an imported haemodialyser can be as high as RM125 (US$30) per dialyser depending on the brand and packing size. Therefore, immediate action is needed to compensate and reduce at least the cost of haemodialyser.

To that end, UTM made it a mission to establish its own brand for renal products, starting with the production of a haemodialyser. In order to do that, Prof Dr Ahmad Fauzi Ismail and his team from the Advanced Membrane Technology Research Centre (AMTEC), Universiti Teknologi Malaysia (UTM), began their research into creating a home-grown haemodialysis system for blood purification using membrane technology that would greatly reduce the cost of treatment for Malaysian ESRF patients, and the government and NGOs who are subsidising treatment. This is because at present, hospitals and haemodialysis centres in Malaysia solely depend on imported renal products from modern countries like Japan and Germany.

The project started with the development of a high performance haemodialysis membrane, where prior to membrane fabrication process, a polymer solution was prepared by mixing 18 wt.% polysulfone and 8 wt.% polyvinylpyrrolidone in N-methyl-2-pyrrolidone as the solvent. Both membrane and haemodialyser were produced using in-house equipment and instruments producing a well-optimised membrane specifically designed to remove critical uremic toxins while retaining essential proteins like albumin in blood, resulting in an optimised blood purification process. Further, along with the low production cost and high flux achievement, this home-grown haemodialyser is capable of removing sufficient amounts of uremic toxins from a patient’s blood including a large fraction of recalcitrant middle molecular weight molecules.

It is anticipated that the reduced price of this home-grown haemodialyser, in addition to the product’s trusted performance, will heighten the chances of market penetration in Malaysia, with the potential to greatly reduce costs borne by patients, the government, and NGOs, freeing up valuable resources to be used in other high impact projects that cater to the nation’s needs. With such an impact to Malaysian society as a whole, it is little wonder that UTM’s long-term goals include making Malaysia a regional base for renal products in Southeast Asia, and perhaps one day, the world.