Sunday, January 28, 2018

Have PKD and Travel? Need Dialysis? There is an App for That, Implantable Bionic Kidney, 3D Printed Kidney helps Transplant Procedure

Living with PKD

From Luxora Leader

How saving a author‘s life helped my dialysis app go international

Javier Artigas

When Javier Artigas began needing kidney dialysis and found himself jobless, he developed an app to make it easier for people to get treatment when travelling. But his breakthrough came completely by chance, after he saved the life of a famous Argentine writer.

Without a job, Javier Artigas needed money to support his family, so he decided to rent out space in his Montevideo home on the home-sharing site, Airbnb.

It went well. One of his guests was the well-known Argentine writer, Hernán Casciari. But two days into his stay, Casciari had a heart attack. He needed to get to hospital quickly.

As chance would have it, Artigas‘s wife, Alejandra, worked for the Uruguayan senate, and was able to organise a police escort to speed up the journey. Instead of 40 minutes it took just 12. That, and the blood they donated, saved Casciari‘s life.

Later, once he had recovered and returned to Argentina, the writer left Javier and his wife a five-star review.

“Excellent house for sedentary travellers prone to myocardial infarctions. The area is beautiful and has direct access to the best hospitals. Javier and Alejandra instantly become guardian angels who will save your life without even knowing you. They will rush you to the hospital in their own car while you‘re dying and stay in the waiting room while doctors give you a bypass. They don‘t want you to feel lonely, they bring you books to read and they let you stay in their house extra nights without charging you. Highly recommend.”

But Artigas was more than a good host and Casciari‘s newly found guardian angel – he knew from personal experience just how hard it can be to be ill when you‘re far away from home.
Find out more

In 2007, Artigas was diagnosed with polycystic kidney disease, which caused his kidney function to decline rapidly. By 2014, he required haemodialysis treatment three times a week to do the work his kidneys no longer could. Each dialysis session – during which his blood would pass through an external waste-removing filtration machine before returning to his body – took four hours.

For patients like Artigas, their dialysis sessions need to be set in stone to prevent dangerous toxins from building up in the blood. Regular appointments cannot be missed, so visiting a foreign country where you may not speak the language, understand medical regulations, or be able to find affordable treatment, is a huge challenge.

Artigas‘s job involved lots of travel to Latin American and African countries where there was a further problem – finding somewhere safe to have dialysis, with uncontaminated water. After he revealed his condition and his need for dialysis to his employers he lost his job.

“I had four children and I didn‘t know what to do,” he says. “Nobody was going to hire me. To be unemployed was a whole unknown world for me. I went into a crisis because I was my family‘s breadwinner – a deep emotional crisis.”

It‘s estimated that chronic kidney disease (CKD) affects one in 10 people around the world, with millions dying every year due to lack of affordable treatment.

Artigas eventually managed to find work in IT, but this also involved some foreign travel. On one occasion he was sent to Córdoba, Argentina, where he had arranged a dialysis session, but when he arrived he was told that there was no record of his appointment. He had no access to the vital treatment he needed because he wasn‘t a resident of Argentina.

After almost 12 hours of desperate searching, terrified he was going to die from the toxins in his blood, he managed to find a hospital willing to provide him with dialysis.


People used to try and find a dialysis centre first, and then plan their holiday – we do it the other way aroundJavier Artigas

“On my way back, on that 2,000km trek, I started thinking about this problem,” he says.

It was a wake-up call. He decided he wanted to do something to help dialysis users, and in 2015 he developed an app, Connectus, to connect kidney patients with treatment centres when away from home.

“People used to try and find a dialysis centre first, and then plan their holiday,” says Artigas. “We do it the other way around. You find the beach where you want to go and we‘ll find the dialysis centre for you.”

Connectus initially launched in August 2015 as a small web platform, costing just $1,700. It focused on connecting patients from Uruguay with a small number of dialysis centres in Argentina and Brazil, the most popular destinations for Uruguayan tourists.

A month later, the Massachusetts Institute of Technology gave Connectus its prestigious Best Innovative Healthcare Solution award. This was a big success, but the breakthrough that enabled Artigas to expand the project to serve people in nearly 150 countries, providing access to more than 14,500 dialysis machines, came about in the most unexpected way – as a result of Hernán Casciari‘s Airbnb review.

Unbeknown to Artigas, an Airbnb representative in Miami had forwarded the review to Joe Gebbia, the company‘s multi-billionaire co-founder, who read it and sent Artigas an email.

On 31 December 2015, Artigas and his wife were driving to a beach 100km east of Montevideo to celebrate New Year when Gebbia‘s email arrived. It said he would like to fly to Uruguay to stay with Artigas‘s family.

At first, Artigas thought it was a hoax. But he handed the phone to his wife, and she replied to the email. Within an hour Gebbia had booked his flight. He would spend New Year‘s Eve in the air and arrive on New Year‘s Day.

As the two men got to know each other, Artigas asked what had driven Gebbia to make his sudden visit to Uruguay.

“He said, ‘I‘ve come here because I want to hear first-hand your story. I want to know every detail. I want to know your blood type. Everything you‘ve gone through.”

Artigas had not planned on talking to Gebbia about his app, Connectus, but he had already heard about it and asked lots of questions about that too.

Gebbia spent most of his time in Montevideo relaxing and reading in the garden. Then one day he told Artigas to go to his computer and look for an email from San Francisco.

“I thought it was going to be payment for his stay at my house – I wasn‘t going to charge him. Then all of a sudden I see that there‘s a contract to go into business with his company. I couldn‘t believe it,” he says.

Since then Connectus Medical has gone from strength to strength. It‘s not the only app or website of its kind, but it has now been used by nearly 250,000 patients.

Artigas‘s precarious finances have stabilised and his health has also improved.

Kidney disease runs in the Artigas family. Javier‘s 22-year-old daughter has it, and his father died of it at the age of 48, only a few years older than Artigas is now.

On 9 August 2017, Artigas had a kidney transplant that changed his life. Two days later, on the anniversary of his father‘s death, while recovering in the intensive care unit, his doctor played him El Chiquilín de Bachín on the bandoneon, to help him relax. Little did the doctor know, El Chiquilín de Bachín – The Little Boy from the Tavern – was what his father used to call him.

It was a special moment. As he embarked on a new life with a functioning kidney he felt that his father was there, urging him to use the opportunity to the full.

He now no longer needs dialysis, but he continues to work to make life easier for those who do.




Artificial Kidney Development

From Times Life Style, By Paul Becker

Scientists Have Developed A Bionic Kidney That Can Replace Kidney Dialysis



A team of researchers in the University of California are on a path-breaking revolution that can actually solve all the kidney related issues. The researcher’s team are on the development procedure of artificial kidney which is implantable. This artificial kidney can actually work as same as the real kidneys.

If the development of artificial kidney is successful, there would actually be no need of dialysis. There has been a huge rate of success in the kidney transplant procedures for the patients with severe kidney or renal diseases.

The recent researches have proved it that 93 percent of the people with kidney transplant are just working fine after a year and 83 percent are even working after 3 years without showing any kind of issues.

According to the data of 2016, more than 25,000 kidneys are gone through the transplantation procedure each year but on the other side more than100,000 people are in the need of kidney transplant each year.

On an average, a patient has to wait for five to ten years for a healthy and suitable kidney

Dialysis is another artificial process that eliminates the toxins from the bloodstream but it cannot filters out all the toxins and this procedure must be performed on a regular basis when it is done at home via peritoneal dialysis and if it is hemodialysis, the patient has to visit the clinic three times a week. Shuvo Roy, a professor in the UCSF Department of Bioengineering and Therapeutic Sciences and co-inventor of the device, explains this artificial kidney as the best alternative to dialysis and other external devices that can hamper the regular lifestyle or limit the mobility of the patience.

Yes, it is true that getting a well matched donor and transplanting kidney from them is still the best treatment option for the ESRD but unfortunately, the shortage of organ donors is a big issue and here comes the advantage of a bionic kidney. The best part of opting for artificial kidney instead of choosing kidney transplant is that it does not need the patients to be on the immunosuppressive drugs to avoid rejection.

Roy has claimed that this device can help a huge number of the people who are now on the list of dialysis and kidney transplant procedures. This device is a perfect solution for a long span of time and it could be the best alternative to the kidney transplant procedure.

Now it’s time to know how this device works actually-

Bio-artificial kidney performs most of the tasks just like the normal kidneys. The tasks include filtration, balancing and many other biological functions of normal kidneys.

This device is powered by body’s natural blood pressure and that’s the reason why it doesn’t need any external tubes that are commonly associated with the artificial kidneys that are wearable.

These artificial kidneys are developed with the silicon nanotechnology which makes the compact filtering membranes which is actually very much reliable.

The novel molecular coatings used in this system protects the silicon membranes and makes them completely compatible with the blood.

People with the bionic kidney implants may still need to take hormonal supplements on a regular basis just like they need to have in the case of dialysis.

“The long-term challenges center around keeping the device operating trouble-free after implantation beyond a few months,” said Roy. “Some problems won’t become clear until we do clinical trials.”




Technology

From TCT Magazine, by Sam Davies

axial3D printed kidney model provides solution to complex procedure

axial 3D kidney mode



A 3D printed kidney model, manufactured by axial3D, has enabled surgeons to successfully perform a complex transplant operation on a young mother in Belfast.

Pauline Fenton, 22, was suffering from end-stage kidney disease and was dialysis-dependant when her father, William, 45, was confirmed to be a suitable living donor, but was blood group incompatible. The discovery of a Bosniak 2F renal cyst on William’s donor kidney further complicated proceedings. Potentially cancerous, it would need treatment before the incompatible transplant could be carried out.

Surgeons at Belfast City Hospital turned to 3D printing for a helping hand, CT scanning the kidney, and printing a replica model. It allowed the surgical team to determine the size and location of the cyst, and plan the procedure accordingly. Once the cyst had been removed, Pauline could then receive the replacement kidney.

“We planned and rehearsed the surgery precisely, using an exact replica of the donor kidney containing the size and position of cyst, so my team knew the precise procedure required in the operating theatre,” commented Tim Brown, Consultant Transplant Surgeon at Belfast City Hospital. “This level of insight is just not achievable with standard pre-operative imaging. This father’s gift of life to his daughter proves the benefit of living organ donation but in this case, I’m certain 3D printing also played a part in helping us to give this young mother an improved quality of life and the opportunity to see her child grow up.”

Belfast-based axial3D were the company on hand to 3D print the replica kidney, harnessing the expertise of its specialist team to deliver an accurate and ultimately life-changing model. The company has long-been promoting the adoption of additive manufacturing within the medical sector, and in recent weeks established a Scientific Advisory Board to oversee its own medical 3D printing activities.

With cost-saving at the forefront of the NHS agenda now more than ever, axial3D believes there’s plenty of scope for 3D printing’s incorporation into state medical centres, and uses the Pauline Fenton case as a prime example. The average cost for a patient on dialysis is more than £30,000 per year, which is reduced to £5,000 post-transplant. 3D printing can mean that price reduction is reached quicker, and safely.

“We work with surgeons with the core aim to improve patient outcomes; reduce operating times and ultimately help advance surgical education and planning for the future,” said Daniel Crawford, Founder of axial3D. “We’re proud that our technology can have profound positive impacts on improving the quality and length of patients’ lives and we’re delighted that our work provided significant benefit for this family.

“It is vital that our amazing surgeons have access to the best and most innovative solutions to support them in planning for very complex procedures. 3D printing offers an exciting opportunity for hospitals to reduce costs, elevate care, and most importantly, improve patient outcomes. Now that 3D prints are available via the NHS in Northern Ireland, we look forward to supporting more surgeons and patients with this technology.”

Sunday, January 21, 2018

PKD Treatment with Dialysis, Football Sized Kidneys

PKD Treatment

From Oxford University Press

Outcome of autosomal dominant polycystic kidney disease patients on peritoneal dialysis: a national retrospective study based on two French registries


Abstract

Background

Pathological features of autosomal dominant polycystic kidney disease (ADPKD) include enlarged kidney volume, higher frequency of digestive diverticulitis and abdominal wall hernias. Therefore, many nephrologists have concerns about the use of peritoneal dialysis (PD) in ADPKD patients. We aimed to analyse survival and technique failure in ADPKD patients treated with PD.

Methods

We conducted two retrospective studies on patients starting dialysis between 2000 and 2010. We used two French registries: the French Renal Epidemiology and Information Network (REIN) and the French language Peritoneal Dialysis Registry (RDPLF). Using the REIN registry, we compared the clinical features and outcomes of ADPKD patients on PD (n = 638) with those of ADPKD patients on haemodialysis (HD) (n = 4653); with the RDPLF registry, those same parameters were determined for ADPKD patients on PD (n = 797) and compared with those of non-ADPKD patients on PD (n = 12 059).

Results

A total of 5291 ADPKD patients and 12 059 non-ADPKD patients were included. Analysis of the REIN registry found that ADPKD patients treated with PD represented 10.91% of the ADPKD population. During the study period, PD was used for 11.2% of the non-ADPKD population. Compared with ADPKD patients on HD, ADPKD patients on PD had higher serum albumin levels (38.8 ± 5.3 versus 36.8 ± 5.7 g/dL, P < 0.0001) and were less frequently diabetic (5.31 versus 7.71%, P < 0.03). The use of PD in ADPKD patients was positively associated with the occurrence of a kidney transplantation but not with death [hazard ratio 1.15 (95% confidence interval 0.84–1.58)]. Analysis of the RDPLF registry found that compared with non-ADPKD patients on PD, ADPKD patients on PD were younger and had fewer comorbidities and better survival. ADPKD status was not associated with an increased risk of technique failure or an increased risk of peritonitis.

Conclusions

According to our results, PD is proposed to a selected population of ADPKD patients, PD does not have a negative impact on ADPKD patients’ overall survival and PD technique failure is not influenced by ADPKD status. Therefore PD is a reasonable option for ADPKD patients.




Life After the Transplant

From Chronicle Live, United Kingdom

Man with American football-sized kidneys feared he would 'disrespect' donor when he piled weight on

Andy Howe, 50, before and after his three stone weight loss

Andy Howe was diagnosed with polycystic kidney disease and each of his kidneys are the size of an American football

Andy Howe, 50, of Consett, said the thought of damaging his new kidney and disrespecting his donor motivated him to lose three stone

When his kidneys failed Andy Howe got the life-saving transplant he dreamed of.

But afterwards his diet spiralled out of control, meaning he put on three stones in weight.

Now, the 50-year-old has transformed into a new man out of fears he would “disrespect” the donor who helped save his life.

Andy, of Consett , County Durham , was diagnosed with polycystic kidney disease - a genetic disorder that causes cysts to grow within the kidneys - and had to follow a strict diet and regime.

In 2012, his kidneys failed and had to be on dialysis every night at home for eight to 10 hours.

But his dream came true on September 24, 2015 when the Freeman Hospital in Newcastle called to say doctors had a potential kidney for him.

After undergoing a kidney transplant, Andy regained his appetite and gained three stone.

He said: “My kidneys stopped completely and I was on dialysis every night.

“It was very quite restrictive and there was a lot of veg that you couldn’t eat.

“I received a transplant that was really successful but I started to eat the wrong types of things.”

Andy started to enjoy burgers, kebabs, pizza and puddings - all things he was unable to eat on dialysis - and within a year he gained three stones.

Daily tasks, such as cutting the grass and hoovering the carpet, became difficult.

Due to his condition, Andy’s kidneys are each the size of an American football and constrict his lungs.

He said: “I was trying to tie my shoes one day and when I bent over I fell forward and bashed myself on the wall. I was really embarrassed.

“I was in the army and was really fit and played sport but I couldn’t do any of that with my kidneys being rubbish.”

Andy decided it was time to take action and admits he was inspired by his donor.

He said: “I thought if I don’t go I am going to damage this kidney that I have got donated from someone who died.

“I have got this kidney and I would not be respecting them.”

Andy joined Slimming World and in his first week lost 6 1/2 pounds.

“I lost one stone in three weeks,” he said. “I still wasn’t exercising as my kidney was still sore.

“I couldn’t run, so there was no exercise - it was purely following the plan.”

Since joining Slimming World, Andy has dropped from 14 stone 10lbs to 11 stone 10lbs.

“It has made me healthier. I have reduced my medication and I don’t have to go to the hospital to see the consultant as often,” he said.

Sunday, January 14, 2018

PKD: Eligible for Disability Retirement? PKD Care: The New European View, PKD Treatment: A Global View

Living with PKD

From Press Herald, BY BETTY ADAMS, KENNEBEC JOURNAL

Mainer with kidney disease fights for disability retirement


WEST GARDINER — Terrence “Terry” Marks points to a picture that shows the kidney of a person with advanced polycystic kidney disease. Small cysts or blisters cover the exterior of the kidney, which is much larger than a normal kidney.

“That’s what my kidney looks like,” Marks said.

The disease, which runs in his family, has reached the stage where his kidney function was last rated at 16 percent — meaning it’s doing 16 percent of the work it should be doing to filter toxins from his system.

At 56, his immediate future holds transplant or dialysis, and the West Gardiner man has been preparing for both.

He’s also trying to figure out a way to help support himself and his wife while he gets treatment.

“How do you live and pay your bills?” Marks asked.

Marks was terminated from his state job in November 2015 because he was no longer physically able to perform his job after 19 years and 11 months as part of a state highway maintenance crew.

For a year, the family was OK financially because he had purchased income protection insurance, but that support ended in November 2016.

Now things are much tighter.

Marks has exhausted his bids to get disability retirement from the Maine Public Employees Retirement System, and an appeal of that final rejection is pending at court in Augusta, where oral arguments are set for 9:30 a.m. Feb. 6, 2018.

Marks is represented in the appeal by attorney Paul Aranson of South Portland; Assistant Attorney General Christopher Mann represents the state retirement system.

“I would advise people to get an attorney early on because it’s not a user-friendly system,” Aranson said on Wednesday. “You have to know what you’re doing.”

He said different rules apply in the state system.

“In Social Security disability system, if you’re disabled any time within five years of stopping work you have ‘insured status,’ so you’re eligible for benefits,” Aranson said. “In the state system you have to be totally unable to do your job the last day of your job.”

Data from MainePERS indicates that 82 of the 121 disability applications handled in 2016 were denied initially. It also shows that 23 of the 73 appeals were granted at the agency level. Marks’ appeal was denied, which is why he has gone to court.

Terrence Marks’ wife Tina said they have been to Social Security and were told Terrence Marks is ineligible for Social Security.

“He was born with this. We knew about this in his 30s; it never affected us until November of 2015,” Tina Marks said. “We have to pay our bills. We have to live between the time his kidneys start failing and the time if and when he gets a transplant and if and when he goes back to work. So how do we live between that time frame?”

She said he should be eligible to get at least some of the money he’s paid into the state retirement system.

Marks went to a legislative committee hearing in April to speak in favor of changing laws regarding state disability retirement benefits.

However, that bill died.

At that hearing, Sandy Matheson, executive director of MainePERS, noted that 1,300 of 38,500 retirement members were on disability; the others were on service retirement. Another 51,000 were actively paying into the plan.

She noted that members of MainePERS “experience varying levels of difficulty and frustration when applying for disability retirement.”

Specifically, Matheson said, the statute limits the MainePERS benefit to permanent disability.

“We know there’s a misperception of what our program is that really causes a lot of hardship and heartache for people,” Matheson told the committee.

State Sen. Shenna Bellows, D-Manchester, who has been trying to help Marks and his family, said Tuesday she tried to introduce another bill in September to fix the problem, but that move was rejected as well.

“I think MainePERS disability benefits should be available to people awaiting transplants,” Bellows said. “After more than a decade of service. I think it’s important they receive the benefits to which they’re entitled.”

She said it’s an issue she plans to pursue in the future if she is re-elected to represent District 14 in the state Senate.

“This is a situation that’s just heart-breaking,” Bellows said. “Any state worker who’s facing this type of thing should have that coverage.”

The Marks also have gone to other state and federal legislators for help. In the meantime, Marks is now getting much of his medical treatment at the Veterans Administration hospital at Togus, where several of his former nephrologists now work. He retired after 24 years in the military, the first four in the U.S. Army and the remainder in the Maine Army National Guard where he was a truck driver and later a heavy equipment mechanic. He’s hoping to be re-evaluated for veterans benefits as well.

Marks also tried to access a pension he had through a former employer, but learned he must wait until he reaches normal retirement age.

Tina Marks, an assistant clerk at the West Gardiner Town Office where she has worked for almost 20 years, carries the family’s medical insurance, but her $29,000 annual salary makes them ineligible for other forms of aid, including Supplemental Security Income.

At home, Tina Marks keeps a file folder full of medical bills. The family pays a little on each every month. On Dec. 21, Tina Marks estimated they had about $15,000 in outstanding medical bills. They’re still paying a Maine Health bill for $26,000, their share of the cost of an angiogram done a few years ago.

“We’ve always paid our bills,” Terrence Marks said.

Tina Marks said it would mean a great deal if her husband could get access to any one of the accounts which contain money that he earned.

Her husband lists the problems: “I’m too young for my military retirement,” he said. “I’m too young for my Social Security. I’m too young (for a pension) from a previous job I had for nine years, and I’m too young for Maine State Retirement; we’re fighting that one.”

In late December, Terrence Marks looked healthy, so much so that friends tell him, “Terry, you’re looking good.”

He has a ready response: “If I was in a car accident or sprained an ankle wearing a cast, you can physically see it,” he said. “You can’t see the decline in my kidney.”

He recalls a former supervisor telling him he looked good. He said he responded by pointing to the picture of the bad kidney and saying, “This is what my gnarly kidney looks like.”

The man told him he was surprised because he had not understood previously.

Now that Marks is on the Maine Transplant Program through Maine Health’s Maine Medical Center, he’s also looking for possible kidney donors. No one in the family is eligible because the disease is genetic.

A couple of potential donors match his blood type, and he’s quick to point out that his insurance company will pay for the testing and the transplant.

Terrence Marks’ father suffered from the disease as well and received a kidney transplant.

Marks said he has asked himself, “Am I going to be like my father?” who had a transplant in 1988 and had to take numerous anti-rejection medications for the remainder of his life. He died in December 2002 at age 69.

Marks said he has been told that protocols have changed a lot over the past 30 years. And he’s still hoping that one of those income sources will come through soon.




From Univadis, United Kingdom

New position statement on polycystic kidney disease


The European Autosomal Dominant Polycystic Kidney Disease (ADPKD) Forum has urged a more holistic approach to the care of patients with ADPKD.

In a new position statement, published in Nephrology Dialysis Transplantation (NDT), the forum recommends that individuals with ADPKD be given access to lifelong, multidisciplinary, specialist and patient-centred care involving a holistic and comprehensive assessment of the manifestations, complications, prognosis, and impact of the disease on the patient and their family. It states that patients should have access to treatment to relieve symptoms, manage complications, preserve kidney function, lower the risk of cardiovascular disease, and maintain the quality of life. Information and support should also be accessible to help patients and their families to be fully informed and to be active partners in care.

“This position statement takes a holistic view of ADPKD – and this is what makes it so valuable. It puts the patients at the centre, not the disease," said Professor Denis Fouque, NDT 's editor-in-chief. “It is not about evaluating single treatment options and comparing outcome. Instead, it gives a full picture of the disease and explains what patients really expect from ADPKD therapy.”





From Island Post Gazette, British Columbia, Canada

Global Polycystic Kidney Disease Treatment Market 2017 – Recent Study Including Growth Factors, Applications, Regional Analysis, Key Players and Forecasts till 2022

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