JULY 2016 Kidney Healthdoc.mediaplanet.com/all_projects/18280.pdf · think: it’s estimated that one in 10 people have it. And up to 100,000 deaths a year in the UK are associated

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Kidney HealthHEALTHAWARENESS.CO.UK

Self-care patient storyDebbie Wood on how home dialysis has helped her regain her freedom

TOP MARKERSHow new biomarkers are helping diagnose kidney disorders P8

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Dr Richard FluckConsultant renal

physician at the Royal Derby Hospital & chair of

Think Kidney

READ MORE ON HEALTHAWARENESS.CO.UK

What is Fabry disease?All you need to know about Fabry disease in kidney disease patientsP4

Fiona LoudPolicy director at the BKPA on how kidney transplants save lives - and moneyP9

Shining a light on nephrotic syndromeDr Moin Saleem on the need for a cure for this rare condition, which affecrs around 10,000 people in the UK.

IN THIS ISSUE

Why kidneys are the hardest working organs in our bodiesYour kidneys are vital to your health says Dr Richard Fluck. It’s time we understood more about them — and took steps to look after them

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In 2014, a survey was conducted which researched the pub-lic’s understanding of

kidney disease and kidney health on behalf of Think Kidneys, an NHS initiative to improve the care of peo-ple at risk of, or with, acute kidney injury (AKI).

The surprising results showed people know little about what their kidneys do or how they can be damaged. For example, only 51 per cent of the population know that kidneys produce urine. Many people think the most dam-

aging thing you can do to your kidneys is drink alcohol when, in fact, a major risk comes from smoking. And there’s a lack of awareness about the things we need to do to keep our kidneys healthy; keeping hydrated and drinking regularly, exer-cising, eating healthily and keeping weight down. The ‘Think Kidneys’ campaign this summer is highlight-ing the need to do just that – Think Kidneys.

Widespread benefitThe kidneys are the hardest

working organs in our bod-ies. They get rid of waste products and regulate salt and water balance, and con-trol blood pressure, produce a hormone which stops us from becoming anaemic, and keep bones healthy by activating vitamin D. They are vital to our well-being.

Sadly, as this campaign highlights, irreversible chronic kidney disease — which increases risk of heart attacks and strokes — is more common than you might think: it’s estimated that one in 10 people have it. And up to

100,000 deaths a year in the UK are associated with acute kidney injury, a sudden re-duction in kidney function which can result in long term kidney damage. It’s thought that up to one third of those deaths are preventable.

Unfortunately, kidney dis-ease symptoms are subtle, of-ten not noticed until signifi-cant damage is done. That’s why the kidney community has to get this message across: your kidneys are amazing and vital to your health. Look after them and they will look after you – every minute of the day.

@MediaplanetUK

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Founded in 1982, the Society for Mucopolysaccharide Diseases is the only national charity specialising in 25 very rare MPS and related conditions in the UK. It represents and supports over 1,250 children and adults suffering from these diseases, their families, carers and professionals.

Our key aims:• Provide support by offering a range of practical services and a network for those affected by MPS and related diseases;• Promote research into the development of treatment for MPS and related diseases;• Raise awareness of these diseases

One baby born every 8 days will be diagnosed with an MPS or a related disease

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Even though my mother and four siblings had been diag-nosed with Fabry disease, I had

no symptoms, so I thought I had escaped,” says Priti, 52. “I had been diagnosed as a carrier and was monitored by the hospi-tal but I didn’t take it very seriously. Then suddenly in March 2004, I was told that I had kidney failure. “It was a huge shock. I only had 10 per cent kidney function and had to start dialysis. I knew what that meant because my older sister, who had al-ready been diagnosed with Fabry disease,

had been through renal failure already.”Fabry disease is a lysosomal storage dis-

ease, a rare genetic condition with no cure caused by the lack of an enzyme that breaks down waste products in the cells. The build-up of waste products causes progressive cell damage affecting many parts of the body. Symptoms can include burning sensations or pain in the hands and feet, headaches, vertigo, tinnitus, dark red spots on the body, fever, sweating too little or too much, intol-erance to heat, abdominal pain, vomiting and diarrhoea and impaired hearing.

The emotional roller coaster of kidney damagePriti* thought that she had escaped the full effects of Fabry disease – until she found she had kidney failure. Now on hospital haemodialysis, she hopes for a transplant

By Linda Whitney

FACTS

“* Names have been changed to protect the identity of those involved.

Pain and burning sensation in hands and feet

Small raised dark red spots (called angiokeratomas) on your skin

Impaired ability to sweat, which in turn causes frequent fevers and a low tolerance to heat or exercise

Stomach problems such as pain, nausea, vomiting or diarrhoea

Hearing problems such as ringing in the ear or hearing loss

Depression and fatigue

Changes in the eye

More serious problems affecting the heart, kidney and nervous system can typically be seen in older patients as the disease advances

Kidney Disease

FABRYDISEASEIN KIDNEY DISEASE PATIENTS

The Society for Mucopolysaccharide Diseases (the

MPS Society) is the only UK charity supporting indi-

viduals and families affected by MPS, Fabry and re-

lated diseases.

MEDIAPLANET 5AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

Date of Preparation: 13/07/2016 UK/C-ANPROM/FAB/16/0007

www.mpssociety.org.uk

@MPSSocietyUK

www.facebook.com/mpssociety

Over time, some patients develop more serious symptoms that affect the heart, brain and kidneys. Waste products accumulating in the kidney cells and the walls of blood ves-sels supplying the kidneys can lead to impaired kidney function.

Priti started continuous ambulatory perito-neal dialysis. “The equipment was portable so I was able to travel and did not need to go to hos-pital for dialysis, but the process means you are prone to infections and five years later infec-tions meant I had to swap to haemodialysis, which I have now had for seven years.

“I now go to the hospital for haemodialysis three days a week and I’m tired afterwards so with that and looking after the house and one of my sons who also has Fabry and lives at home, I can no longer work – I trained as a dispens-ing pharmacist. Sometimes I have pain in my hands and feet which painkillers do not help much, and I have occasional gastro-intestinal symptoms. I can feel weak and I’m slow doing household chores.”

Priti hopes for a kidney transplant and at one point had a potential donor, but she has high levels of antibodies so her body would

be likely to reject anything other than an extremely close match.

“Now my daughter – who does not have Fabry and is a perfect match – has offered to be a donor but the necessary tests have revealed that she has a so-far undiagnosed kidney problem of her own. I am on an emotional roller-coaster. She is my best hope of a transplant but I just hope she has not got anything seriously wrong.”Meanwhile, says Priti: “I feel guilty that I have passed on this disease to my children but there is some comfort in speaking to other Fabry pa-tients, and I live in hope.”

WHAT IS FABRY DISEASE? Fabry disease (or Anderson-Fabry disease) is an

uncommon, inherited disorder caused by a mu-

tation in the gene that controls an essential en-

zyme in the body’s cells. This enzyme metabo-

lizes (breaks down) lipids, which are fat-like sub-

stances such as oils, waxes, and fatty acids.

The gene mutation causes either an absence or

reduced activity of the enzyme in Fabry disease

patients, resulting in a build-up of lipids in the

cells of the organs, which eventually interferes

with their normal functions. This leads to pro-

gressive damage to the body, resulting in a wide

range of symptoms and complications. Kidney

disease can either be one of them, or can occur

in the absence of other key signs. Due to the risk

of kidney failure and other complications in Fabry

disease patients, early diagnosis and treatment

are essential.

HOW IS FABRY DISEASE LINKED TO MY KIDNEY CONDITION? Normally, serious kidney problems (such as kid-

ney cysts, proteinuria or reduced renal function

which may eventually lead to dialysis) are more

characteristic of the older population. In Fab-

ry disease however, more than 80% of patients

suffer from some degree of kidney impairment,

and this typically becomes apparent in their

mid-30s, and can occur as early as childhood.

Therefore, if unexplained kidney symptoms are

present in a younger patient, and/or there is fam-

ily history of early serious kidney conditions, then

screening for Fabry disease is recommended.

HOW DOES FABRY DISEASE RUN IN THE FAMILY? Fabry disease is not contagious. It is a hereditary

condition that can be genetically inherited from

parents to children.

Every cell in the human body contains chromo-

somes, which are thread-like structures carrying

genetic information. Females have two X chro-

mosomes in each cell, and males have one X

and one Y chromosome. The faulty gene caus-

ing Fabry disease is located on the X chromo-

some only.

Men carrying this gene are always affected by

the disease, whereas women may not have

symptoms, or their symptoms may be less se-

vere or appear later in life.

X’ X X’ Y


No-one knows why my kidneys failed at 20, but two weeks after diagnosis I started dialysis,” says Deborah Wood. After two failed

kidney transplants, she was back on dialysis.She did three three-hour sessions weekly at

a nearby dialysis centre but after eight years enquired about home haemodialysis.

“I was cannulating myself and self-caring in the unit. I wanted to do it at home to spend more time with my daughter and do more dialysis sessions,” says Deborah, 39.

“I now dialyse at home six to seven days a week. The machine is simple to use and fi ts in the car so I have travelled to see my family and taken holidays in Portugal and France. If it was smaller and lighter it could be taken on public transport.

“I usually dialyse in the conservatory af-ter work. My family are happy because I do it all myself - they bring me a cup of tea while I’m dialysing. My daughter grew up with me doing it, so she’s used to it, and I go to her school to talk about dialysis.

“I now have more family time, less restric-tions and medication, and feel a lot better health-wise as I’m dialysing almost daily.

“My machine went wrong once, but a new part arrived within six hours. Otherwise I’ve had no problems, just routine servicing and a small fl uid leak – probably my fault.

“If off ered home dialysis I would say do it. It may not suit people without support, but once patients have been taught self-care, the aim should be to get them dialysing at home. They should not have to rely on hospitals.”

Deborah received home haemodialysis 7

times per week from 2010 to 2016

Read more on healthawareness.co.uk

Home dialysis: Deborah’s ticket to

freedom

INSPIRATION

PATIENT STORY

Home dialysis can bring better health and quality of life to patients, and new technology is making it more viable all the time.

Home haemodialysis and peritoneal dialysis could bring huge medical and psy-chosocial benefits for pa-tients living with kidney failure.

Home dialysis frees patients from the need to attend hospital for four hours three days a week. “Instead of dialysis con-trolling their lives, they can fit dialysis around their schedules,” says Dr Sunita Nair, Nephrologist at Shrews-bury and Telford Hospitals NHS Trust.

“With home haemodialy-sis patients can dialyse long-er hours, even overnight, more closely mimicking the physiological function of kidneys. This provides bet-ter blood pressure and phosphate control, along with a lower pill burden and dietary restrictions.”

Home haemodialysis has improved survival rates among patients with kidney failure. “The fi ve-year surviv-al rate for people on extend-ed nocturnal home dialysis is 85 per cent - comparable to patients with a kidney trans-plant from a deceased donor,” says Dr Nair.

Home dialysis enables pa-tients to return to work – of-ten hard to fi t round hospital dialysis. Costs to society and the NHS are also reduced.

Of the 48 per cent of kidney

failure patients on dialysis, 6 per cent are on peritoneal dialysis (PD), which is nor-mally done at home. Of those on haemodialysis, in 2014 2 per cent are home dialysing* - far short of the 2002 NICE guidelines that aim for 10-15 per cent of dialysis patients to home dialyse, but numbers are rising.

New technologyImprovements in medical technology and increased patient education are mak-ing home dialysis easier, says Dr Shashidhar Cherukuri, consultant nephrologist at the Royal Wolverhampton NHS Trust.

“The newer home haemo-dialysis machines are the size of a large computer printer and operate with a cartridge loading and a push button. They are portable, with in-built water purifi cation, so need only be connected to the household tap,” he says.

Patients require less train-ing to use them compared to older models, and Dr Cherukuri says: “There have been concerns that older pa-tients may be more reluctant to use them but in my experi-ence most can and want to.”

For PD patients, bio-

compatible dialysing fl uids are reducing the problems of us-ing the peritoneal membrane as a dialysis fi lter.

Keep informedHome haemodialysis is not suitable for people who are extremely frail, have active psychiatric problems, uncon-trolled seizures, unstable car-diac conditions or extreme skin lesions. It is contraindi-cated in homeless patients, with lack of patient personal and home hygiene or active drug dependence. Addition-ally, PD is also contraindicat-ed in people with complex abdominal surgery.

Patient concerns about problems while home dialysing are addressed by ensuring good training and telephone links with their renal team and dialysis equipment suppliers.

But both doctors expect home dialysis to grow. Dr Cherukuri says: “Greater awareness of the benefits among medical teams and patients combined with new technology mean home dialysis is set to become more common.”

* UK Renal Registry, 18th Annu-

al Report of the Renal Association.

Nephron 2016;132(suppl1):41–68

New technology helps boost home dialysisBy Linda Whitney

“Dr Sunita Nair

Nephrologist, Shrewsbury

and Telford Hospitals

NHS Trust

Dr Shashidhar CherukuriConsultant nephrologist,

Royal Wolverhampton

NHS Trust

HOME HAEMODIALYSIS THAT FITS INTO A PATIENT’S LIFE

© 2016 NxStage Medical, Inc. The NxStage trademark is registered in the U.S. Patent and Trademark Office

and is owned by NxStage Medical, Inc. The NxStage trademark is also registered in Australia, Canada, the

European Union, and Japan. System One is a trademark of NxStage Medical, Inc. APM1884 Rev. A

NxStage Medical UK, Ltd. • St. Mary’s Court, The Broadway • Amersham, Buckinghamshire, HP7 0UT • UK • 0-800-048-8352

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Traditional machine size, without

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For more information on the NxStage System One visit

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The NxStage System One is a portable haemodialysis

system designed for home use by patients and care

partners. Its simplicity and compact size are intended

to allow for easy use in patients’ homes. The System

One plugs into a standard electrical outlet and, unlike

conventional haemodialysis systems, requires no special

infrastructure modifications to operate. Doctors can also

work with their patients to choose the flexible therapy

option that lets them fit their dialysis around their life.

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Top markers: effective diagnosis of kidney healthInnovative new biomarkers are an effective way of diagnosing kidney disorders and monitoring therapy, says Roy Sherwood, Professor of Clinical Biochemistry, King’s College London

By Tony Greenway

What is a ‘biomarker’?A substance that is measurable in, for ex-ample, blood, urine or faeces that has a role in diagnosis, prognosis or monitor-ing of therapy. There are two aspects of kidney disease where diagnostic informa-tion or monitoring of therapy is required. The first is the rate at which the kidneys filter toxic substances from the blood. The second is the effectiveness of the tu-bule, which is responsible for reabsorp-tion and secretion of essential substances such as phosphate. Different biomarkers are used to look for AKI (acute kidney in-juries), CKD (chronic kidney disease) and ATN (acute tubular necrosis).

Have conventional biomarkers been effective in diagnosing kidney disorders?The markers used for the last half centu-ry or more are urea and creatinine — and both have limitations. One of the prob-lems of urea is that it is a substance made in the liver — so if the liver isn’t function-ing properly, it is a useless marker. Creati-nine — which is the breakdown product of

creatine, found in the muscles — is the frontline biomarker. The problem with this, however, is that the amount you produce is dependent on how many mus-cle cells you have. So if you are a child, an amputee or an elderly person you will produce less creatinine. So it’s only an ideal biomarker for 80 or 90 per cent of the population.

Have new biomarkers been found to aid diagnosis?Yes. The first is a protein called Cystatin C, which is more effective — but it isn’t

widely used. Unlike creatinine, it costs pounds rather than pennies, but many clinicians have no experience of it. Another is NGAL (neutrophil gelati-nase associated lipocalin), which can be measured in blood or urine, can be run on analytic machines and is start-ing to be the subject of major NHS discussions because it appears to be able to predict the onset of acute kidney injury following surgery. There is also KIM-1 (kidney injury molecule 1) which isn’t automatable — yet.

How does automation in diagnostic testing produce cost efficiencies?At King’s, we have one of the largest au-tomated track systems in Europe, pro-cessing between 4000 and 5000 samples a day. In the past, if a clinician wanted to run a number of tests — kidney and liver function, thyroid function and cholesterol, for example — samples would have to be taken and physically loaded into various machines. Now, it’s all automated.

NEWS

Professor Roy SherwoodProfessor of clinical biochemistry, King’s

College London

PHOTO: THINKSTOCK

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COLUMN

Fiona LoudPolicy director, British Kidney Patient Association (BKPA)


Kidney transplants save lives – and money

Kidney transplants save lives – but still too many people wait too long for them.“A kidney transplant is the gold standard of treatment for kidney failure,” says Fiona

Loud, policy director at the British Kidney Patient Association (BKPA). “The good news is that of the 59,000 people in the UK whose kidneys have failed, 52 per cent are now living with a transplant. This year is the first time that people with transplants outnumber those on dialysis.”

But Loud says there is further to go before BKPA achieves its aim of ensuring that all kidney patients suitable for a transplant can access one. “Currently there are just over 5,000 people on the waiting list and on average one of those people dies each day.”

Average waiting time for a transplant in the UK is two to three years, compared to 15 to 18 months in Spain, the world leader in kidney transplant access.

Black and ethnic minority patients in the UK wait about a year longer, partly because of par-ticular health issues and partly because fewer suitable donors come forward.

“Waiting times vary around the UK. We want to see these variations reduced,” says Loud. Mean-while donations from live donors fell slightly to 937 in 2015. Deceased donor transplants were 2,035.

“We need to raise awareness that transplants bring a better quality of life,” says Loud, who has herself received a kidney transplant. “Swapping from dialysis to a transplant brings bene-fits for patients, their families and the social care system.” It also saves money. Dialysis costs on average £30,800 per patient per year. The first year of care after a transplant is £17,000 and then £5,000 for subsequent years.

“We want to see more people discussing the issue of donation. If you want to be an organ do-nor, add your name to the organ donor register and let your loved ones know now, so they do not have to consider it while grieving,” says Loud.

“Many families are proud that their loved one chose to give someone else the chance of life after their own death.”


Kidney patient Matthew Herbert found that overnight dialysis at home improved his health, his work

and his family lifeMatthew Herbert began hospital haemodi-

alysis aged 17. Five years and a failed transplant later, he was back on dialysis.

“I felt rough in between sessions and weary afterwards,” says Matthew. “The hospital was 25 miles away so it impacted on my schedule.”

Now Matthew, who works as a chef, has swapped to a home dialysis machine, and di-alyses overnight while asleep.

“Now dialysis hardly impacts on my life at all. Nobody needs to know about it. My boss is happier that I get to work earlier than mid-day, as I used to after hospital sessions.

“I feel a lot better. I used to get a bit down, getting up early to go to dialysis three days a week. Home dialysis doesn’t make you feel as sick as being at the hospital.

“You can home dialyse daily during the day but overnight dialysing is every other night so there’s less needles and stress on your fis-tula. Four-hour hospital dialysis sessions can stress your heart, but dialysing overnight means less heart stress and better blood pres-sure control. I’ve cut down on my pills and have less dietary restrictions. It’s as close as you can get to having your own kidney.”

“I have more energy so I’ve started cycling, golf and running and my wife and I am at home more often so my wife and I are think-ing of starting a family.

“I was apprehensive at first but the train-ing is good and there are phone helplines for treatment and machine problems. I’m much happier on home dialysis. I wish I’d started earlier.”

Matthew received home haemodialysis 7

times per week from 2010 to 2016

Catheter-related blood stream infections (CRB-SI) can pose problems for dialysis patients but planning and good care can – and have – cut the incidence of infection

“Infections which start at the site where the catheter enters the bloodstream of people on dialysis can quickly spread to other parts of the body, caus-ing serious problems such as heart valve infection, spi-nal or brain abscesses, ” says Professor Donal O’Donoghue, consultant renal physician at Salford Royal NHS Foun-dation Trust and President of the Renal Association.

People can develop multiple infections, and dialysis was until recently the most com-mon cause of blood stream-re-lated MRSA. CRBSI has a mor-tality rate of between 12 to 25%.

“The good news is that the risk of such bacterial in-fections has reduced ten-fold in the last decade,” says O’Donoghue. “The risk is now 1.5 per hundred patient years, but we are still working hard to reduce it further.”

The key to reduction main-ly lies in prevention, he says. The dialysis process requires vascular access to the blood-stream, either through a fis-tula or a ‘line’.

The fistula is created by

re-routing an artery to join a vein, thus increasing its blood flow and ‘toughening up’ the vein to make it more resistant to repeated needle insertions.

Alternatively, a ‘line’ is gen-erally a catheter inserted into a large vein, often in the neck. It is often used on a tempo-rary basis but can be used longer-term.

“The fistula is the gold stand-ard for dialysis patients,” says O’Donoghue. “They have low-er infection rates than lines, but fistulas need to be prepared at least eight weeks in advance to give them time to mature. That means the medical team and the patient must meet to discuss the patient’s needs, op-tions and choices well in ad-vance of dialysis being started, so an optimally-functioning fistula can be fashioned if hae-modialysis is chosen.”

Preventing line infection centres around caring for the line during and between di-alysis sessions. “The key is to use a bundle of care approach, which has been proven to re-duce line-related infections by two thirds,” says O’Donoghue.

Rather than allowing lines to exit the skin immediate-ly above the vein, they can be ‘tunnelled’ under the skin for a short distance so that in-fection at the point of exit or along the tunnel is easier to detect and treat before it gets into the bloodstream.

To minimise infection risk, lines are now inserted by sen-ior doctors in an aseptic envi-ronment, using imaging to check correct positioning.

The use of high-quality an-ti-microbial dressings, based on chlorhexidine to secure and protect the site, such as those approved by NICE for critical care patients, is im-portant. “We always use chlo-rhexidine dressings, as part of the larger care bundle,” says O’Donoghue.

“This detailed care-bundle approach, plus forward plan-ning of treatment and the use of fistulas rather than lines where possible, has resulted in a seismic shift in the ap-proach to infection preven-tion. This has cut the risk of CRBSI infection rates for kid-ney patients on dialysis,” says O’Donoghue.

NEWS

COLUMN

Matthew Herbert


How home dialysis gave Matthew a

new life Cutting the infection risk for dialysis patientsBy Linda Whitney

Professor Donal O’Donoghue

Consultant Renal Physician at Salford Royal NHS Foundation

Trust and President of the Renal Association

PHOTO: THINKSTOCK

1/1 201 x 289mm

FULL PAGE

Daniel’s kidneys have failed. Only a machine keeps him alive and he desperately needs a transplant.

It’s only with the help of people like you that we can pioneer new treatments that help find cures for children like Daniel.

Please help us fund lifesaving breakthroughs: www.kidneyresearchuk.org/danielappeal

Telephone: 0300 303 1100Email: [email protected]

Thank you.

Meet Daniel

Registered Charity No. 252892, Scottish Charity No. SC039245

JULY 2016 Kidney Healthdoc.mediaplanet.com/all_projects/18280.pdf · think: it’s estimated that one in 10 people have it. And up to 100,000 deaths a year in the UK are associated

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