Blogs
Neil Turner is the Chair of the Board of Trustees for the Charity and became a Professor of Nephrology at the University of Edinburgh in 1998. Before then he was Senior Lecturer and Honorary Consultant in Medicine and Nephrology in Aberdeen 1994-8, and Kidney Research UK Senior Research Fellow, MRC Training Fellow and a clinician at the Royal Postgraduate Medical School, Hammersmith Hospital, London.
Follow Neil's blog where he will talk about a whole manner of things...
Unexpected answers.
Lowering cholesterol with drugs ('statins') prevents lots of heart disease in people who have heart disease. Lots of dialysis patients die of heart disease. So lowering cholesterol with statins must be a good thing for dialysis patients, right? No, apparently not. Two good trials now have unexpectedly shown that statins don't give the expected benefits in patients on dialysis.
Narrowed arteries to the kidneys are a bad thing, so opening up those narrow arteries must be a good thing, just as it is for heart attacks, right? Think again. It is looking as if the risks are at least as bad as the benefits, at least for the first few years after the procedure. There is a danger of doing more harm than good.
These unexpected answers show how important it is to do proper trials of new treatments. We can't always assume that results for kidney patients will be the same as for others. Clinical trials are really difficult to do - very time consuming, bureaucratic (it is frustrating and difficult to get permission), and very expensive. Yet we've got to do them - we really need more to prove which are the best treatments for different kidney diseases.
Most of these trials are too huge for Kidney Research UK to fund without help. The UK Kidney Research Consortium is an initiative that KRUK is involved in to bring together the best ideas and get them funded. Or if you have a million pounds spare, or one pound, you can give it online or contact Kidney Research UK directly.
12 million people, 2 dialysis machines
I’m recently back from Malawi, a landlocked country in South East Africa which is famous for its associations with Dr Livingstone, and for its lake. It is also extremely poor. It has 2 dialysis machines for its population of 12 million, putting it in a similar position to the UK 50 years ago.
It is such a poor country that you may wonder whether it is worthwhile spending scarce resource on kidney disease. On the other hand, when you see a young woman with acute renal failure after pregnancy, a condition she could make a complete recovery from if dialysed for a week or so, you want her to have dialysis.
The experience made us reflect not only on how lucky we are to live where we do, but also on the amazing amount of medical progress there has been in the last 50 years. This progress has been made up of thousands of tiny steps, and each time Kidney Research UK makes a grant it aims to contribute to one of them.
We are about to hear the result of a grants round in which £1.25M will be committed to about a dozen research projects. This is great, but it is less than a quarter of the research proposals that we received (about 1 in 5 in fact), and we wish it could be more.
Kidney patients, blogging and YouTube
My sister should be doing this. She's funnier, and her girls need to be embarassed as often as possible. But patient blogs lead the way. Here are some of my favourites.
The best blogs
Hours spent on dialysis provide an opportunity to surf the web, or write a novel - or blog straight to the web.
Bill Peckham is from Seattle. His Dialysis from the sharp end of the needle is exceptional - intelligent commentary in his quite long blog entries which aren't always the easiest to read. But I love his one-line summaries of what is going on in all the other blogs and the definitive list of kidney blogs - there has to be one here that you like.
Kamal Shah's blog is from Hyderabad and maintains a sobering commentary on the perils of depending on private medicine and an under-controlled pharmaceutical industry, mixed with film, chocolate fudge, and much more. Samiir Halady's Life on Dialysis is another well written blog giving a positive perspective from Mumbai. Worth looking back at older posts.
Holly Shaw is a UK blogger and student in Warrington who writes the Life on Dialysis, Waiting for the Call blog. Now she's had the call, and has been transplanted, and her latest blog entry is about her unknown donor. Now that she is transplanted it will be interesting to see if she has time to keep blogging. But there must be other good blogs from UK patients that I haven't found - please comment.
YouTube
Many people spend longer on YouTube than TV now. But some of them are interested in kidneys. It is really striking to see the enthusiasm of people who have started doing home dialysis every day, and feel much better for it. Some are on a campaign to convert you to it. You might like Dialysis in the Woods - it's great to see people with so much energy and determination to do as much as they can. The luxurious way to do holiday dialysis is in a huge camper van which contains your daily HD machine - here driven between dialysis units to show everyone else.
YouTube is a treasure trove. Try a search on dialysis - wow. 829 results today, most from patients, most of it real and true. Patient education is being transformed by this. But if you still prefer TV, you can replay Carter from ER on dialysis - and it's a bit creepy.
Don't miss the impressive collection of Kidney Research UK videos (except the one of me), but there is so much there and it's growing every day.
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