Re-thinking Indigenous Dialysis

Readers in Australia will have seen the Australian Story: Message from Mandaway last week about Mandawuy Yunupingu, the lead singer and front man for the world famous Yothu Yindi.  Like many of us, his long term kidney failure has reached end stage and he’s joined the BigD club.

But unlike most of us, Mandawuy is an Aborigine. And for Australia’s indigenous population (and I suspect most indigenous populations around the world), they do the BigD tough.

Why? Because it affects many more of them (nine – and up to 30 times in some remote areas – the national average,) and many live hundreds or even thousands of Ks from a dialysis unit.

This chart from the Fred Hollows Foundation shows the relative incidence of end-stage renal failure rates between the Aboriginal populations in the Australian States and territories and in the non-Aboriginal population. That’s right, they are the orange columns.  In fact, what is shows is that renal failure is an epidemic amongst Aboriginal Australians in remote areas, especially the Northern Territory and Western Australia.

The Foundation says that the rate of death from kidney disease among Aboriginal and Torres Strait Islander people is:

“    …approximately nine times the total Australian rate. In the Barkly region of the Northern Territory standardised end-stage renal disease (ESRD) incidence among Indigenous Australians is up to 30 times the national incidence for all Australians. The number of dialysis treatments in the NT is doubling every two years.

“The health service costs of this rapidly rising epidemic are a major demand on resources. Projected cost of medical services required in the next five years for the treatment of end-stage renal disease in the Northern Territory is estimated to be $50 million.

“The current epidemic is probably explained by the confluence of many risk factors over a short time period, associated with dramatic lifestyle changes and serious socioeconomic disadvantage.”

Doing it Tough

Mandawuy lives in Yirrkala about 1000km (600 miles) from Darwin, so he flies in three times a week.  His new BigD life involves sitting at the machine or travelling to or from it.  Like most of us, he had to work out how the deal with it.  It took him a while, but he’s there now.  With his wife, Yalmay, he has been training for months to use a dialysis machine at home. He hopes he will have a machine in Yirrkala by Christmas.  At least that will give him back his life between sessions.

His is not an isolated case. Just today, 1 November 2009, The Age newspaper reported that the celebrated artist, Patrick Tjungurrayi has been told he must fly from his home at Kiwirrkurra in the western desert region of Western Australia, to Perth, more than 1,800 km away, for dialysis. What’s more galling in this case is that Mr Tjungurrayi helped set up a dialysis centre is a regional centre just (just) 250km (155 miles) from his home and is not allowed to go there because it is not in his home state, but across the border in the Northern Territory.

Let’s put that in perspective. Imagine flying from Brisbane to Melbourne, or Des Moines, Iowa to New York, or Rome to London three times a week for three hours of dialysis, for the rest of your life.

I’m not sure how well I’d cope. And many don’t. They go to their centre irregularly, often hugely overloaded with fluid, and very unwell. They leave sick and washed out; feel Ok for a day and lousy until the next visit.

While some of this behaviour is a result of depression and lack of education, it is overwhelmingly an infrastructure problem. We need to look at new ways of supporting remote people needing the BigD; something out of the box.

India has had a similar problem, not with dialysis, but with suicide. There has been an epidemic of farmer suicides across the country. It was simply not possible to send thousands of trained counsellors and pshchologists around the country, so they have taken a radically different approach. They have identified and trained one or two local women in thousands of villages, to act as counsellors. It’s not perfect, but it is working.

We need to find a similar solution, using local people in their community. For example, set up one- or two-chair “LittleD” units all around remote areas, using trained locals to do the sessions. Or develop mobile dialysis units, vans or trucks, staffed by local people, that visit remote areas every few days.

People in remote areas should not have to do the BigD so tough. Some smart, practical action, like a pilot Mobile Dialysis Unit run by locals could change their lives. The WA or NT Departments of Health would be a good place to start.

And I know that the BigD family are keen to help.

Dialysis is Like Life, Only More So

The BigD is the original moving feast. One month life is sweet: my brain functions Ok; puncturing is easy, with both buttonholes working; I feel fit and well; my blood pressure is like an athlete’s; my blood work is mostly within the zone; I am sleeping well; I can get out of bed, jog and exercise like I did way back when. On these days I think: “This dialysis is a soda – can I handle it or what?”

Then the next month arrives. Suddenly I can’t find one of my buttonholes – my fistula has moved or grown under the skin, and the holes are no longer in alignment. So I start another hole, with a sharp needle. It is always messy and not quite as comfortable. I forget to take a phosphate binder on the day I decide to go crazy and have a pizza, so I get a little itchy and restless; my brain is fuzzy; it becomes a little more difficult to sleep; I’m tired and find it hard to leap out of bed for a run or the gym; I’m a less masterful needler, which raises my blood pressure and stress levels. On these days, I think: “This dialysis is a drag, will I ever feel good again?”

Then, slowly my new buttonhole is formed and works a treat. My meds are all back on line and I start feeling a little more capable; I sleep better and can exercise. The dark days become grey, then bright and sunny.

I have noticed this more than ever since I returned to the BigD about a year ago. I used to think: “This month it things settle down to a steady state I can live with.” But I have finally realised that life on the BigD is actually a cycle -  just like life – only a little more so:  small things can easily go amiss and have a disproportionate impact. Accepting this makes it easier to deal with.

As usual, it’s all about expectations: enjoy the highs and know that the lows don’t last.

Anyway, enough of this. I feel pretty good right now, but I’m off to the doctor to get my Swine Flu vaccination. Could be another cycle coming on…

“Tinkerer” builds his own Dialysis Machine

At various times, I wish we were a little more advanced with the BigD. I wish for access without needles, wearable artificial kidneys and stem cell therapy to regrow a healthy kidney. I am sure they will arrive, eventually.

But once I get over my impatience, reality sets in and I realise how lucky I am to be alive right now, when dialysis has not only been invented, but is the streamlined, readily reproducible treatment I take for granted. And to some extent, the same goes for transplants. Today, no-one expects to die from kidney failure, they just (just?) go on dialysis and line up for a transplant.

But if we lived in the late 40’s early 50’s, renal failure was a death sentence. No options or maybes.

Then in 1945 in Holland, one man’s tinkering changed all that:

Dr Willem Kolff - His groundbreaking work on the artificial kidney in the 1940s made him a household name and a hero to millions of people around the world who benefited from his 'tinkering'.

Dr. Willem Kolff, a Dutch physician and tinkerer who built the first successful kidney dialysis machine from cellophane, Ford auto parts and other scraps and in the process saved the lives of millions.

Kolff was a young physician in Groningen in the Netherlands before World War II when he saw a 22-year-old man die of kidney failure. “I felt that if I could remove every day 20 grams of urea from this man, then he could live,” he later recalled.

Physicians had encountered two primary problems in trying to achieve this: filtering urea and other toxins from the blood and keeping the blood from clotting while it was outside the body.

During World War I, a German physician, Dr. Georg Haas, had some success with a newly developed anticoagulant called heparin, but he could not filter the blood fast enough and the supply of heparin was limited. Strangely, he left his work half-completed, and the medical community largely forgot about it.

Kolff began experimenting with sausage casings made of cellophane, a form of plastic made from wood or cotton. The material is porous, and Kolff suspected that it might suit his purposes.

He found that when the casings were filled with blood and agitated in a solution of salt water, the urea and excess water diffused out while essential blood components were trapped inside the tube. Heparin, moreover, had become commercially available.

Kolff wrapped the tubing around a drum and, using parts from a water pump that he obtained from a Ford dealer and some empty orange juice cans, built a mechanism to turn the drum.

The first 16 patients he treated died. Then, shortly after the end of World War II, he was asked to treat the comatose Maria Schafstadt, a 67-year-old widow imprisoned for collaborating with the Nazis. Although he felt that many of his countrymen “would have liked to wring her neck,” he agreed.

After a week, Schafstadt came out of the coma. As she slowly opened her eyes, her first words were, “I am going to divorce my husband,” who was opposed to the Nazis. She lived seven more years before dying of problems unrelated to her kidneys.

Today, millions of people around the world undergo regular dialysis each year to keep themselves alive, often as a temporary measure while they await a kidney transplant.

Kolff later developed a portable version of the dialysis machine that could be used to perform at-home dialysis.

After he immigrated to the United States, Kolff spent 17 years at the Cleveland Clinic Foundation before moving on to Utah in 1967. He finished his career there, formally retiring in 1986. He continued working in his laboratory until bad health overtook him in 1997.

Kolff was divorced by his wife of 63 years, Janke, in 2000, reportedly because she could no longer stand his constant tinkering.

Just this year,  on Wednesday 11 February 2009, Dr Kolff died from natural causes at a Philadelphia care center, aged 97.  (For more about Dr Kolff’s life, his exploits in WWII and his role in developing other artificial organs – including the first artificial heart – go to his obituary: LA Times, Feb 14 2009).

In just 64 years, less than a lifetime, the dialysis machine has gone from a collection of sausage casings, a car pump and bits and pieces, to the flash electronially-controlled, pure-water-fed units of today.  But one thing remains, sitting bright inside every unit: Dr Kolff the tinkerer’s design.

So next time you’re on the machine, spare a thought for Dr Kolff, and all those other tinkerers out there.  It’s through them that our wish list will come true.

What does a Healthy Dialysis Fistula Look Like?

Mattie P saw the pic of my fistula and asked: Is your fistula considered healthy?

It is. However, you often can’t tell by looking. There are several ways to tell:

• It has a strong ‘thrill” (a whooshing noise and a buzz in time with your heart beat, where the vein is joined to the artery). This indicates lots of blood flow, which is what is needed if the arterial needle is to get enough blood to push through the machine.
• If you keep your arm straight and raise your hand above your head, the blood should drain from your fistula, and leave it looking like a deflated balloon (see video below). This is also good, because it shows that your fistula is not clotted or blocked and that the blood is coming from and going to the rest of your body.

• When you lower your arm, your fistula fills up again, quick smart. Good for the same reason as above.
• When you gently press on the fistula, it is painless, soft and resilient, again indicating good blood flow.

Eventually your fistula will get hardy and tough (and ugly, but that’s what shirt sleeves are for). All things are relative. Young fistulas are soft and can be fragile. As they get used, the fistula (vein) wall gets covered in scar tissue, which acts to protect it a little from the constant needling. Hopefully you experience fewer and fewer blow outs from over-enthusiastic needling or from an inadvertent arm fold or bend that blocks the return (venous) blood flow.

Two things you don’t need in your fistula: blockage or clotting and infection.

Blocking or clotting directly impairs the efficiency of the dialysis (since less blood is being cleaned) and thus seriously endangers you health. You can tell if there is a problem by looking for the above healthy symptoms: strong thrill, quick emptying and filling, soft and resilient (no unexplained lumps). If you have a problem, tell your primary nurse and or doctor ASAP. The usual remedy is to have a small operation to have the blockage cleared.

Infection is really bad news. The first signs of an infection may be redness, leakage and pain, skin wearing away resulting in exposure of the fistula wall or a combination. It does not impair the blood flow, but it can spread throughout the body and cause sepsis (a toxic condition resulting from the spread of bacteria from the fistula), and even death. Unless caught early, infection can certainly lead to a loss of the fistula. This means a Permacath and all the pleasures that come with it, a stay in hospital to treat the infection and to create another fistula or graft.

Infection is most common in new fistulas, for a couple of reasons: because you are new to the whole process and can make mistakes with infection control; and because you often spend more time in hospital, where infections are more common. Prevention is the key. Always wash your hands and fistula before start dialysis, always use alcohol or other antiseptic swabs before any needling. Wear a glove when you help to remove the needles at the end of the run. If you dialyse at a unit, follow scrupulously the unit’s infection control procedures.  If at home, set up and follow you own procedures.

Anna Catteral once said to me when I had just begun the BigD, and I will never forget it: “Your fistula is your lifeline, look after it.” It is, and I do.

Afternote: The arm lift test shows that the blood flow from the fistula to your body is in good condition.  It does not show how well blood is flowing into your arm, via the anastomosis (where the vein and the artery are joined).   See here for more info.

Riding an Exercise Bike on Dialysis – Part 2

A while ago I wrote about riding an exercise bike attached to the BigD chair, and mentioned that there may be a more portable, more affordable option. Well there is and it is.

After about six weeks struck low with some virus and a fractured wrist, I am now getting back into exercise. I have really missed it, for all the reasons I have written about before: handling the BigD less well, feeling tired and weak, fidgety, and most of all not sleeping well.

So as daddy’s little helper, I have purchased a mini exercise bike to use while I’m on the BigD.

It’s a Chattanooga Deluxe Pedal Exerciser (USA import) from Sportstek, 6 Park Road Oakleigh. Actually, Max and I paid for half each, so we can share it, but I picked it up! We paid just over $100 each, wholesale, which is OK.

It’s a funny little unit. Quite light (just over 7kg) and easy to move around, and simple to use once you get the hang of it. One design flaw is that because it sits in front of you, it tends to slide away from you if you are not positioned just right. However, this was easily remedied by buying a non-slip mat from a rubber ware shop (like Clarke Rubber, not the adult kind).

Exercising the exerciser

I ride it for the first half hour I’m on the machine. This has the proven benefit of improved phosphate removal due to increased muscle blood flow. Half an hour is enough. I have other things I usually want to do, and if I use it longer, I run out of time. While I pedal, I eat ice (for pleasure) and listen to podcasts on my MP3 player for entertainment.

One thing I have noticed: for me, it’s not such a good thing to work too much above my fitness level. Firstly, I get hot and sweaty, which is not great for my neighbours (or my street clothes, though maybe I should change into gym gear?). Secondly, for some reason, I find it hard to relax after I get off the machine. Maybe I’m just too wound up. It may be just me, everyone is different, but for now I will settle for a gentle, lightly sweaty half hour.

Other than that, I am getting fitter, my phosphate is going down and I’m feeling well. All in all a half hour well spent.

Verdict: these little peddlers are available everywhere, they’re reasonably priced and they offer real benefit. Give one a try!