Drug Tolvaptan gives hope for Brits living with kidney disease

The drug Tolvaptan has been given the green light in the UK as the first-ever treatment for autosomal dominant polycystic kidney disease. A few months earlier it also received approval in Europe. It's the first ever treatment for autosomal dominant polycystic kidney disease (ADPKD), an incurable genetic condition that can cause heart attacks, stroke and kidney failure. The disease hits 60,000 people in the UK alone, leading to many cysts forming on their kidneys, leading to massive size increases for these vital organs.

The patient takes a tablet twice a day, which slows the rate of cyst development. After getting the go-ahead, it's expected to be available to patients from early 2016. The disease is responsible for one in ten people who end up on dialysis and one in eight who end up having a transplant. Sadly ADPKD is a genetic condition,one out of two children from a parent with ADPKD will have the disease.

You can read more about its approval on News Medical Net and in the UK's Daily Mail

Wales changes the law on organ donors

Wales, part of the United Kingdom, has some autonomy on law making, and today they are implementing a law.

A GREAT law!

From today, in Wales it is now the law that adults will be regarded as organ donors, unless they opt out of organ donation. This is similar to the law in some other countries, but not the rest of the UK. Amazingly, as the UK only has one transplant list, this will help people everywhere in the UK.

In Wales, more than one million people - 34% of the population - have registered to opt in already and only 86,000 have opted out. This is great news as in the past year, 14 people died whilst waiting for a transplant in Wales, while there are currently 224 people on the waiting list, including eight children. The figures for the rest of the UK, of course, are much higher, by more than a factor of ten. To the extent that roughly 3 people die every day in the UK waiting for a transplant.

The change in the law aims to increase the number of donors by 25%. Let's hope it succeeds.

Let's hope the rest of the UK pass the same law. Soon.

Wearable Artificial Kidney

The Wearable Artificial Kidney a.k.a. WAK is in the news.
We reported on this concept previously, in 2014, and before that in 2011 on a different device (which it was one of our most popular posts that year)

I've read about this in several news items, many saying it will replace dialysis machines. But of course it IS a dialysis machine. Admittedly smaller than normal and wearable.

The device is a 4.5kg (10lb) miniature dialysis machine that a patient can wear around their body. It looks bulky at the moment, but researchers believe they can get the weight down to just 2.3kg (5lb), as well as reduce its size.

It connects to a large vein in the body through catheter which has filters to separate water, salts and minerals out of the blood.

The filters have to be replaced once a week, and chemicals added once a day to clean the water filtered out.

Read more: here at the Daily Mail

You can watch a youtube video on the device HERE

Seven patients in Seattle, who had end-stage kidney disease, wore the device for 24 hours. The patients were also able to enjoy ice cream and cheesecake, which they weren't able to do on dialysis because it could lead to a dangerous build-up of minerals.

In a previous trials, participants were able to sleep with the devices, and were also be able to take showers and carry out other normal activities.

But there was one major flaw. Two patients stopped wearing the device before the trial ended because of technical issues.

The team said they are now working to fix the problem.

We're Back!

I have been in the middle of moving house for quite some time and been unable to post anything for a while.

BUT, the move is now complete, after many minor problems, and so I hope to post a bit more often now.

Most Dialysis Patients Aren't Receiving The Best Treatment

According to a recent article at GPB, most dialysis patients are not getting the recommended treatment. For twenty years or more, it's been recommended that arteriovenous fistulas should be used, which requires a simple operation, which in turn shortens the time for each dialysis session by increasing the blood flow. But a report in JAMA Surgery says only 20% of patients are going down this route. Despite the fact that using arteriovenous fistulas improves the survival rate.

The results should that it also depended on where you life, with some areas having 11% of hemodialysis patients using arteriovenous fistulas and other regions having up to 22%. This was from a study of almost 500,000 patients. Which suggests almost 400,000 are not getting the best option available.

"Doctors are usually really good about following standards of care and recommendations, but in this area, we are failing miserably," said Dr. Mahmoud Malas, a surgeon at Johns Hopkins University School of Medicine who led the study. "We have had recommendations for [the best possible care for] 20 years now, but after all this time, only about 20 percent of those starting dialysis are getting it done right."

Fistulas are also safer. "Chances of you dying are 30 to 40 percent less if you use a fistula," Malas says. That's a pretty important statistic as well.

If the recommended treatment was used, life would be better and longer for a very large proportion of those on dialysis. Do the right thing and save thousands of lives each year recommends the study.

Obesity and kidney failure

On a recent UK hospital reality show, they introduced a patient weighing in at 270kg - and you thought 270lbs was bad! He had various problems and was being considered for a gastric band operation, because, among other problems, the doctors were detecting kidney problems due to his obesity. Except he wasn't fit enough to have the operation to reduce his obesity - not fit enough due to his obesity!

I always wonder how people can get so seriously obese. "Well after I got married I started to put on weight" he said. Really? Call me naive and taking a somewhat simple view of things, but to get to 270lbs you have to eat a lot of food every day and not take any exercise. So how much do you need to eat regularly to get up to 270kg??? It doesn't happen overnight you know, and eating less while taking more exercise will help. So someone chose to eat vast amounts of food and chose not to do any exercise, and kept doing this for a very long time. Should we have sympathy for someone doing that?

In the UK, the health service is paid for by tax payers, enabling anyone to get medical help that they need without the burden of expensive insurance policies. There's no need to worry about visiting a doctor as you don't need to be able to afford any treatment or drugs prescribed in the vast, vast majority of cases. That's a very good thing in my opinion. But should we be paying for the care of someone as obese as 270kg, or even a "mere" 270lbs? There's a certain self-induced factor in cases like this, and I loose my normal sympathy for those in an unfortunate situation.

Obesity is well known to cause kidney problems, leading to transplants or dialysis. Surely at some point someone should have mentioned that this sort of level of obesity is life threatening. Even at the 270lb mark it's life threatening, and I'm sure some doctor must have mentioned this to the patient.

I really can't understand how someone can get themselves into such a situation, or even get to 270lbs far less 270kg. And why did their family keep giving in and feeding them the huge amounts of food that it takes to get them up to this size. I might be making myself unpopular saying this, but hey, it's my opinion.

Oral drug to reduce potassium levels in chronic kidney failure patients.

Patients with chronic kidney disease may be treated with a class of medications called Renin Angiotensin Aldosterone System inhibitors (RAASI's). Although these drugs protect the heart and kidney, a significant percentage of patients develop a dangerous side effect - high potassium levels in the blood (hyperkalemia).

Elevated potassium puts patients at risk of death from cardiac arrhythmias. Which usually results in doctors taking patients off these drugs to avoid the problem. Or giving them dialysis just to reduce the potassium levels. But some recent research results from two national studies of ZS-9, a new oral drug that has been tested in more than 1,000 patients with high blood potassium, shows hope of solving the potassium problem. It reduced the problem in 98% of patients!

You can read the researcher's news release here. The work was carried out at the School of Medicine at The University of Texas Health Science Center at San Antonio.

Baby Boy is Kidney Donor

This is probably the greatest and saddest story we will ever read about kidney donation. If you don't read this in total awe of the people who agreed to the transplant, you have no soul.

When she was a mere 12 weeks pregnant with twins, Jess Evans was told that one of her sons was suffering from a rare and fatal condition, which prevents the brain developing properly. Their son-to-be, Teddy, had anencephaly, a rare and lethal abnormality. He was likely to be still born, or die very soon after being born.

The doctors offered Jess and her partner Mike Houlston the option of an abortion, but they wished to see and love their child, no matter how short a life he would have. Then after a while they considered organ donation, although initially they were told this would not be possible. When born their son, whom they named Teddy, lived for just 100 minutes. Doctors then carried out a transplant of his tiny kidneys, a mere 4cm in length, into an adult man. The tiny organs were fully functional even in the womb, and will grow to full size while saving the recipients life.

Paul Murphy, of NHS Blood and Transplant, described Teddy’s donation as “exceptional”.
“Every donation is inspirational. It is a selfless act of heroism,” he said. “But Teddy’s story is exceptional. He was the youngest organ donor in the UK.”

I have no idea of the dreadful pain this couple went through, but everyone must admire their generosity and heroism. It would break most people. Fortunately the other twin had no problems and lives on, which must be some comfort for them. They deserve the utmost respect.

You can read more on the BBC News site and on The Guardian newspaper's site.

The Need For an Affordable Dialysis Machine

Lancet published an interesting article very recently - see it here. The Australian authors systematically looked through MedLine for renal studies and data. They found that at least 2.3 million people are dying EVERY YEAR due to lack of access to dialysis or a kidney transplant. It's possible that the figure could be a frightening 7.1 million with a huge number of these unfortunates being in Asia.

They found that there were approximately 2.6 million people receiving dialysis or on transplants, but there could be as many as 9.7 million who missed out, as treatment in developing countries is at a lower rate. They noted the largest treatment gaps in low-income countries, particularly Asia (1·907 million people needing but not receiving RRT; conservative model) and Africa (432 000 people; conservative model). Worldwide use of RRT is projected to more than double to 5·439 million (3·899–7·640 million) people by 2030, with the most growth in Asia (0·968 million to a projected 2·162 million [1·571–3·014 million]). One major and rather obvious reason for so many missing out is the annual bill for dialysis. So the George Institute and three research organisations are offering a $100,000 prize to the successful designer of the first low cost dialysis machine. Among the requirements are meet safety standards, run off solar power, purify water on the spot and cost $1000 to make. Current price??? up to $20,000! Are these machines overpriced, given that the technology has been around for half a century?

There was a second article on the same topic in the same issue of Lancet - read that one here. The findings of that article were very similar. Dialysis and kidney transplantation transformed medical care for patients with kidney failure, but these renal replacement therapies (RRTs) are unavailable to most patients who need them worldwide. Chronic kidney disease is now the 18th leading cause of death worldwide. Accurate estimation of the number of people with kidney failure receiving RRT and forecasting of future trends is essential for planning services and programmes to address kidney failure worldwide.

So let's hope that the prize for researchers is won sooner rather than later.

Kidney Disease Awareness Grows

It must be good news for many to hear this, especially given that we had World Kidney Day last week!

Organisations like the National Kidney Foundation do their best to raise awareness, and the continual stream of advice, along with advances in treating diabetes (one of THE major causes of kidney disease) and high blood pressure treatments seem to be getting through. Does it do any good? Well the American government reported in the latest figures availabble that there were fewer new cases of people going on to dialysis in 2011 compared to 2010. And over the previous two years the number of new cases held steady. LINK

This sort of news doesn't hit the headlines of newspapers, but for kidney disease sufferers, it is very welcome. Two factors were highlighted as being responsible - greater awareness and better treatment of the leading causes. Now if only they can get more transplants.

Cooking methods may reduce phosphorus content in some foods

Dialysis patients have to control their phosphorus intake and phosphorus levels. The kidneys normally excrete excess phosphorus into the urine; however, kidney disease can prevent the body from getting rid of any buildup of phosphorus and that can cause problems for the bones and heart. And unfortunately hemodialysis removes only a small amount of phosphorus from the blood, hence the need for phosphorus binders while on dialysis. Recent research published in the Journal of Renal Nutrition suggests that boiling in water or stewing in oil can reduce the phosphorus content of some foods.

The results vary for different foods stuffs, this is not a universal panacea but it does help a lot with some foods. However the calcium levels increased when boiling in water when using hard water

Most of the thermal processing methods did not significantly reduce protein content. Boiling increased calcium content in all foodstuffs because of calcium absorption from the hard water. In contrast, stewing in oil containing a small amount of water decreased the calcium content of vegetables by 8% to 35% and of chicken meat by 12% to 40% on a dry weight basis. Some types of thermal processing significantly reduced the phosphorus content of the various foodstuffs, with levels decreasing by 27% to 43% for fresh and frozen vegetables, 10% to 49% for meat, 7% for pasta, and 22.8% for rice on a dry weight basis. On the basis of these results, we modified the thermal processing methods used to prepare a standard hospital menu for dialysis patients. Foodstuffs prepared according to the optimized menu were similar in protein content, higher in calcium, and significantly lower in phosphorus than foodstuffs prepared according to the standard menu.

If you examine the references section in the link to the journal article (above) you will find links to several other studies on how different cooking methods for your food can be of benefit to dialysis patients.

Study gives HIV-positive kidney transplants the thumbs up

Life is bad enough if you are HIV-positive, but what if you have kidney failure as well? What are your chances after a transplant? And can an HIV-positive donor help?

HIV-positive people with kidney failure who get a donated kidney from another person with HIV/AIDS fare as well as patients who get one from an uninfected donor, according to a South African study published on Thursday in the New England Journal of Medicine. This is an important piece of research because it opens up a new group of desperately needed kidney donors for HIV/AIDS patients, who are especially vulnerable to renal failure, said the study’s lead author, Elmi Muller, who pioneered such "positive to positive" renal transplants in 2008. Especially since between a quarter and a fifth of HIV-positive patients who do not receive timely treatment get chronic kidney disease now have some hope.

The HIV-positive patients had comparable survival rates to patients who had received kidneys from donors who were HIV-negative. The survival rate among the patients was 84% after one year, 84% after three years, and 74% after five years. And remember, a kidney transplant can save more than one life, as the recipient frees up a dialysis machine for someone else.

For more details see here

Family shares kidneys

Recently on a BBC morning program that I watched while off due to being ill for three weeks, there was a family with a bit of a kidney disease problem.

All three children had a heredity kidney problem. Their middle child, the younger daughter, was the first to have a serious problem and a transplant was required. Up steps the Mum, a perfect match, and she donates one of her kidneys. Some time later the youngest, their only son, also had his kidney problems increase until he too needed a transplant. Up steps Dad, a perfect match for the son. And another transplant takes place. During their interview, eyes gradually drifted towards the eldest daughter. So the interviewer asked the obvious question - what how are your kidneys? Luckily they were not as bad as either of her siblings. However she did look a trifle worried as she couldn't get a kidney from either parent now, and would have to take her chances on the open market, so to speak. Let's hope that she doesn't reach the transplant stage!