Get off Dialysis: buy a kidney

In their book SuperFreakonomics, Stephen J Dubner and Steven D Levitt discuss the terrible state of kidney donations worldwide – or almost worldwide. Wherever the culture is one of altruistic donations, people are dying waiting for transplants. But in one country, Iran, things are a little different. They have a system of paid and regulated living-unrelated kidney donation.

In 1988, Iran adopted a compensated and regulated living-unrelated donor renal transplant program. As a result, the number of renal transplants performed substantially increased such that in 1999, the renal transplant waiting list was completely eliminated. By the end of 2005, a total of 19,609 renal transplants were performed (3421 from living related, 15,356 from living-unrelated and 823 from deceased donors). In this program, many ethical problems that are associated with paid kidney donation also were prevented. Currently, Iran has no renal transplant waiting lists, and >50% of patients with ESRD in the country are living with a functioning graft.

In developed countries, the severe shortage of transplantable kidneys has forced the transplant community to adopt new strategies to expand the kidney donor pool.

For example, while it is illegal to sell kidneys, it is not illegal to trade them. I wrote about Paired Kidney Exchange recently, where incompatible donors can trade kidneys with compatible recipients. This approach has expanded into chain donations, where an altruistic donor, who isn’t asking for a kidney in return, kicks off a chain of paired exchanges. Economist Al Roth’s blog post describes how one altruistic kidney donor saved 10 lives.

Other ideas include commemorative medals and pins to honour donors, shorter prison terms, reduced funeral costs for the deceased donor and having health insurance organisations make payments to live donors.  A really bizarre idea is a Dutch reality TV program, The Big Donor Show, in which three contestants compete to receive a kidney from a terminally ill donor (gross).

However, compared with the Iranian model, none of these approaches has the potential to eliminate or even alleviate steadily worsening kidney transplant waiting lists. So the SuperFreakonomics argument: set up a market in human organs that would save thousands of lives (and millions of dollars in dialysis costs) a year. Drop the altruism for economic common sense: governments pay donors $30k to $50k for their kidneys and watch the waiting lists fall.

This has triggered discussion and argument around the world, and there seems to be an evolving consensus amongst ethics committees, transplant surgeons, bioethics councils, dialysis associations and others that the organ donation process needs reform, with a focus on incentives. What kind of incentives? While probably not cold cash like the Iran model, they would still be financial, like tax breaks, guaranteed health insurance, college/university scholarships for the donor’s children, deposits in their retirement/ superannuation accounts, and so on.

So what’s the hold up? The wave is building, let’s catch it. Contact your local kidney or transplant association and offer your help to make a case for reforming the donor process. Who has a better incentive?

Dialysis when you feel 5 out of 10

Over the last few months I’ve caught any bug that happens to be in the same street, much less the same room. I’ve gone from 5 k runs and gym three times a week to slow morning walks around the bed. Then within a week, back to half speed runs. All very tedious and a not little frustrating.

This morning, I feel around 6 out of 10. Just enough spark to write this week’s blog (only a day or so late).

This is not a normal dialysis problem. It is accentuated by me continuing to take anti-rejection drugs that suppress my immune system. My non-functioning kidney transplant is still inside me. I am pushing for it to go, and hopefully it will be removed this side of Christmas.

So in the interim, how to deal with feeling only 5 out of 10.

Firstly, accept that you are not up to your usual day’s activities. Sometimes this is difficult. Knowing you usually get up at 6am to run the block or pump iron doesn’t mean you should. Listen to your body. Shout yourself a sleep in, then go straight to your shower, etc, dress for the day, enjoy a leisurely breakfast and when you are good and ready, start your day.

Second, keep an eye on your fluid intake. On easy days, since you don’t spend 30-60 minutes sweating before the day begins, you can’t gulp down fluids to replace the sweat. Try to stick to drinking about a litre through the day, so you don’t arrive at the BigD bloated and even less well. If I’m still thirsty after I’ve had my quota, I really like sucking ice blocks (though I can give them up any time!).

Thirdly, while you should watch your diet, don’t make your life an even greater misery. If you feel like it, give yourself a small treat through the day: have a cup of real expresso coffee and maybe even a small cream cake. Life below 5 out of 10 is miserable enough without living like a monk as well.

Fourthly, take extra care on the BigD. Unfortunately, you can’t call in sick. You may feel like crap, but you have to dialyse no matter what. Make sure you do everything right, it’s easy to let something slip if you are not concentrating: wash first, use plenty of antiseptic, measure your weight correctly, make sure the needles are placed just right, and that you get the full benefit of your run.

Fifth, remember that nothing lasts forever. Storms and miseries pass. Put your head down and keep going. Before you know it, you’ll be back to normal – 8 or 9 out 10 – not only healthy but fit enough to babysit your grandson!

Musings from a BigD Christmas party (or why I’m glad I don’t dialyse at home)

Julie and I went to the BigD Christmas party last Sunday. It’s on at the same time every year, 5pm on the last Sunday in November. At the same place, a park with a big sheltered area surrounded by trees, swings and slides. We all try to bring at least one significant other.

Chris, the Unit Manager and several of her wonderful staff and friends organise it every year. They do the hard stuff: buying the chickens and salads, cooking the snags, buttering the bread, making the punch. For the rest of us, it’s just there, ready to eat and enjoy. All for $10 a head.

It was raining a little this year, so rather than the typical 80 people, we had just over 40. It’s a tribute to our Unit that those who have spent the year putting us on and taking us off, advising and supporting, fetching and carrying for us, also come along, often with other family members to spend time with us socially.

It’s good to catch up with our fellow club members when they are out of the saddle: a chance to introduce or catch up with them and their others; kids and grandkids. Once a year we all see each other in a different light. We get a glimpse of the lives and families that make each of use what we are.  Very enjoyable and very Christmassy.  And another reason not to dialyse at home.

This was my second BigD Christmas party after a break of a few years. What struck me this year was that since the last Christmas party 6 or 7 of those that were here last year now had transplants. Of these, 5 were mostly hale, hearty and here again this year, each with their story. The absent ones were unwell to quite unwell, reinforcing the bumpy nature of the transplant journey. How many of us members will receive kidneys this year?

Of course, others here last year were also absent. They left the club permanently during the year: Jeanette I mentioned in a previous post (her excellent husband Ken was here); others left when their time came or at a time they selected. Our notice board always has a range of funeral service sheets pinned up as an ongoing reminder.

Chris made a good speech welcoming all, remembering all. Last year we were waiting to hear where the Unit was to relocate, and when. It is a tribute to the bureaucracy that just last Sunday, one year to the day later, she was able to tell us. The new Unit will be in a large multi-story building across the road from the old one. Still a little hazy on the when, but the where is definite.

I wasn’t the only one in a contemplative mood. Chris told us one other thing. I joined the Unit in 1974 when it was a hospital satellite, the sixth member of that august group, with all of 3 machines operating. A few years later it was expanded to 8 chairs and later still sold to a Gambro and then Diaverum, to become its current glory. Chris announced that after a recent death I was the last of that initial group.

I’m sure that can’t be bad, but the pressure is now on.

Regardless, I plan to be here next year for more musings and possibly to make another record: Like Woody Allen says: “80 percent of success is just turning up.”

Should a failed transplant kidney be removed?

I came back to the BigD about 18 months ago, after my second transplant (from a deceased donor) stopped working. I’d had the transplant for about 3 years, which is quite a short time. A typical transplant should last 18-plus years. Mine failed early because I had a series of rejection episodes in the first weeks and months that damaged the kidney. Still, even a couple of years was great, since in addition to my new-found freedom, my new kidney immediately began to clean out the toxins that dialysis can’t, and rebuilds bones which tend to weaken over the BigD years. Having the kidney in place for even a year is a little like a reset, where your body starts again from (almost) scratch.

So what happens when the kidney begins to fail? It’s the same as when your own kidneys fail, only quicker. First I started snoring, loudly, as extra fluid gathered around my throat and nasal passages. Then at the end of each day my legs started to swell. I bought some support stockings, but it only moved the problem to the top of my knees. I was at a family Christmas in a small country town in central Queensland when the kidney stopped working completely. I filled up with fluid, became short of breath and felt miserable. All within 4 -6 weeks.

I was back on dialysis within a week, and never felt so relieved.

The only thing is that this time, my nephrologist has decided to leave the kidney in. My previous transplant was whipped out after three months because it became toxic. This time it sits quietly on my left side about 5 inches to the left and 2 down of my belly button. (All transplants are located at the front, either left or right, because it is easier to access all the required veins, arteries, ureter and such.) The operation to remove the kidney is quite a big one, and it generates antibodies that make it harder to match a new kidney. So, unless it starts to reject, it stays.

There’s a drawback: I must keep taking anti rejection drugs to stop what’s left of it from rejecting. And the side effect is that my immune system continues to be suppressed. It’s a reasonable trade off when you have a functioning kidney, but not such a good deal otherwise.

The difference in my fitness level between this time and the last is quite marked. After the first transplant was removed, I recovered and enjoyed 10 years of fit, healthy life on the BigD. After the second transplant failed, but remains in residence, I’m catching everything that floats past. One week I’m fit and healthy, jogging and pumping iron, the next week, some bug strikes me low and I can hardly get out of bed. Altogether very boring and unhealthy.

Sometimes it takes a while for the penny to drop. But when it does, it rings like a church bell. Either I stop taking the anti-rejection drugs and the kidney behaves, or out it comes!

Wedding non-post

No post this week.  My daughter Katherine is getting married tomorrow.  As Father of the Bride (a very cool thing to be) I am out of circulation this week.  What with writing our speeches, catching up with everyone, preparing for pre and post lunches and dinners, rehearsals, collecting table decorations, etc.  who has time to write?  I am enjoying it greatly and looking forward to walking her down the aisle at 3.30pm.

But I will be back next week!

Pass the word: Check in your organs before you check out

Up until about two years ago, I shied away from the Kidney Association’s “Don’t take your organs to heaven” stickers.  I felt that having kidney trouble was bad enough without advertising it.  

Then the thought struck me:  it’s nothing to do with me; it’s about getting people thinking, about getting people over the line; about moving from “Organ donation is a good thing, maybe I’ll register one day” to signing up as an organ donor and making the commitment to check in your organs before you check out.

It’s a big step to become an organ donor, not usually made after glimpsing a single sticker.  More often it’s a decision made after mulling it around for months or even years.  Then one day, someone in the right frame of mind may see my car, read the sticker and there and then decide it’s time to become a donor.  

All because the message was there when it was needed.

And from a personal level, if I of all people am not prepared to actively promote organ donation, how can I in good conscience expect to line up for the next gift from a deceased donor?  

So, if you’re on the BigD and hoping for a transplant, get with the program:  pass the word!

Contact your local kidney association for a sticker and stick it.

Paired Kidney Exchange Cuts Time on Dialysis

Back in 1997, the Sounding Board from The New England Journal of Medicine  proposed a new approach to increasing the number of kidneys available for transplant: using kidneys from living donors who are incompatible with the intended recipients but are compatible with other recipients.

For example, my brother Arnie wants to give me one of his kidneys, but he is ABO incompatible.  My friend Max on dialysis has a potential donor Belinda in the same position.  After testing we find that Belinda is compatible with me and Arnie is compatible with Max.  A match made in heaven!  Belinda donates her kidney to me and Arnie gives his Max.  The government likes the idea and the Paired Kidney Exchange (KPE) program is born.

In various forms, this program has been around since the late ‘90s.  Many US transplant centers participate in regional exchange programs across the US.  Johns Hopkins set up their program in 2001.  To Jan 2008, there have been 251 patients in PKE programs transplanted in 27 states across the US.

The first national approach to PKE was the Dutch National Living Donor Kidney Exchange Program, set up in June 2004.  All Dutch kidney transplantation centres agreed on a common protocol. An independent organization is responsible for the allocation, cross matches are centrally performed and exchange takes place on an anonymous basis. Donors travel to the recipient centers. Surgical procedures are scheduled simultaneously. Sixty pairs participated within 1 year. A compatible pair was found for 9 of 29 ABO blood type incompatible and 17 of 31 cross match positive combinations. Five times a cross match positive couple was matched to a blood type incompatible one, where the recipients were of blood type O.  The program has been very successful helping to reduce transplant waiting lists.

Australia has taken its time to get with the program.  The exchange of kidneys was illegal in all Australian states except Western Australia, until June this year, when Professor Paolo Ferrari became the first National Clinical Lead of the National Paired Kidney Exchange program for the Australian Organ and Tissue Donation and Transplantation Authority.

WA led the way with the WA Kidney Exchange Program legislation in 2007.  The first Australian paired kidney transplant was performed in Perth in November 08.  So far there have been 11 successful transplants. Just last Thursday, Australia’s first kidney swap between families took place in Perth, with four simultaneous operations over seven hours at Sir Charles Gairdner and Royal Perth Hospitals.

Last year there were just 812 kidney transplants in Australia, 459 from deceased donors and 353 from live donors.  The national PKE program has the potential to lift the live donor numbers by up to 200 additional transplants per year. Transplants for you and me.

The way I see it there are three places to start:

1. The Australian Organ and Tissue Donation and Transplantation Authority puts up an Online Donor Matching website, where donor recipient pairs can meet, exchange info and kick off the process. (Sending some emails to the Authority suggesting they get started may be useful.)
2. If you have had someone offer a kidney to you, but have been found to be incompatible, tell them about this new program.
3. Raise the program with your nephrologist: ask about getting on to the program, its availability, and your options during your next visit.

You never know, you may be moving from the BigD to the BigT sooner than youn expect!

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.