Doris recently wrote:

My husband has been on dialysis for 3 yrs this May. Before kidney failure he had diabetes and heart disease. To look at him, you wouldn’t think he was sick at all. But this year in December, he is planning to stop dialysis.

The thing is, I don’t blame him. With all these diseases he has been through hell.

He doesn’t really think he’s going to die, and that would be so awesome.

So he’s trying to see if there is a way to control his potassium. Any suggestions?

Hi Doris.

My initial reaction is that your husband probably looks healthy because like many others on dialysis, he IS mostly healthy.  That’s because he is getting good quality dialysis and his fluid and body chemistry are mostly well balanced.

As anyone who is healthy on dialysis will tell you, it is a delightful but precarious place to be.  One slip in diet, dialysis or the physical world and that healthy look and feel becomes a rosy memory.  So he should enjoy it and not take it for granted.

With regard to staying alive after stopping dialysis, there is only a fine line between hope and self-delusion.  And in this regard, he is not Robinson Crusoe.  We have all hoped, prayed and believed against all evidence that our kidney disease will go away.  It is a normal part of the grieving process.  However, one way or another most of us have been proved wrong.

Unless his kidney disease is of a temporary nature, it is highly unlikely that he will live if he stops dialysing.  If he has some residual kidney function (ie he is still producing urine) and the kidney can recover, there may be hope.  However, based on his having diabetes (which is the major cause of kidney failure in the western world) it is likely that his kidneys are damaged beyond recovery.

Also, the first and most obvious outcome of kidney failure is fluid overload, which makes breathing difficult and overworks the heart.  Sadly, the most common cause of death among kidney patients is heart attack.  Most of us have heart disease, usually caused by years of fluid overload and high blood pressure.  If your husband has a history of heart disease, then stopping dialysis will make it worse.

But my question is:  Why stop?  He seems to be reasonably healthy; if he not in pain, not bedridden or unable to function normally, why seriously contemplate stopping?  Is he serious, or simply angry and frustrated at having to dialyse?  It takes a long time to accept life on dialysis.  It took me about eight years and two transplants.  I still don’t like it but I accept it.  It keeps me healthy and I can do most of the things I want, when I want.  To misquote a popular song, if you can’t be with the life you love, love the life you are with.

After all, there’s no coming back from the alternative; we have all faced the question: To be or not to be?

I often image that there is no such thing as dialysis, and I died in 1995.  Over the 20 years since then my kids have grown up – two have married wonderful people and have produced four delightful grandchildren, and the third will be married to another beauty next year; Julie and I started a business together, where I work from home and I love it; we have travelled around Australia, to Europe, and Asia (where I sampled the delights of foreign dialysis centres) and I would have missed the lot.

Luckily, somewhere along the way, I realised that I like my new life.  As they say here, I wouldn’t be dead for quids (dollars).

Sit down and have a talk with your husband.  One of those life talks:  Why now?  Why December? What if he’s wrong?  Talk about your future together and especially yours if he dies.  Talk about what he will miss.  Decisions like this are joint decisions.  If you want him around for a while to come, don’t be so agreeable and understanding.  Not blaming him for wishing he was dead?  Maybe.  But accepting that as a sensible decision? I don’t think so.

With regard to wanting to control potassium in his diet (which is a good sign!), have a look at the Dealing with Potassium leaflet I received when I asked my unit the same question about my potassium level.

Good luck and keep in touch.  Greg

Two days ago (7 Apr 2015), SBS Dateline broadcast Human Harvest: China’s Organ Trafficking.

Just 24 minutes long, it is a truly shocking story about the source of kidney and other organ transplants, with evidence from the doctors who performed some of the operations.  Organs, including corneas and kidneys brutally removed without anaesthetic from tortured political prisoners, who are then killed and disposed of.

Not just a few transplants either.  10,000 organs are transplanted in China every year.  Allowing for tissue matching, that may represent five to ten time that number of people.

China has become a destination for people wanting to avoid waiting lists and get a quick transplant.  And who amongst us has not had that thought flash through their mind at one time or another?

It is hard to believe and even harder to watch.  But watch it we must, to understand what the real price of jumping the waiting list can be: not just a risk to our body, but a Faustian deal with the devil.

  Afterword This blog receives one or two offers a year from people wishing to sell their kidney or transplant tourism services with readily available organs for cash (some also offering finance at 2 percent!).  They are mostly from India, Egypt and Nigeria, or they don’t say.  I put them in my ‘limbo’ file, far away from the light of day.   Typical prices for a black (red) market kidney transplant in these transplant tourism countries.     Here’s a great 3 minute summary of the state of the rest of the world’s global organ trade:  Organ trafficking: Who’s buying and selling human organs? If you are not now totally numb and spiritually exhausted  here are a couple of older reports that should do the trick: The Body Snatchers (2012, 18 mins) The Cruellest Cut – Pakistan’s Kidney Mafia (2007, 24 mins)   About these ads

A couple of months ago, Rob, one of the guys in our local BigD club at Greensborough took part in the annual Stockman’s Rally held in the upper Big River State Forrest near Marysville, Vic.

Here’s his story:

I was one of 500 entrants that took part in the rally.

It was an early start to the day leaving home at 05:30am (a shock to the system) with a mandatory stop at Healesville Bakery for a (small) coffee and then onto the rally for the briefing.

At the briefing everybody was informed that the event “Is not a race and everybody should enjoy themselves!”

At the start gate everyone had obviously forgotten the “This is not a race” instruction as there were around 500 bikes all in one area revving their engines eager to get going.

Into the 85km course and there was dust, dirt, trees and bikes as far as you could see (absolute heaven if you are into that kind of thing).

Rob rearing to go (though it’s not a contest!)

Then I had my first accident: an overzealous rider tried to pass me on a track just wide enough for one, the other rider hit my handle bars and speared me off the track into a tree (luckily no injury). About an hour later on a rough and rocky incline I was doing pretty well and nearly made it to the top, I came around the corner and pretty much ran straight into another rider and his bike and I ended up falling off backwards and rolling back down the hill (still thankfully no injury).

After trying to get my bike back up and get the rest of the way up the hill energy levels were pretty low so I had a well-deserved rest, enjoyed the scenery at the top of the hill then off I went again to find somewhere else to fall off.

The rest of the ride although trying was CRASH LESS.

I made it back to camp and was more than happy to get off my bike and stand around for a while , have some lunch and drink, pack up and head home.

The next day I knew I was alive after counting all my bruises!

The organisers of the rally donated $5,000 to the Ronald MacDonald House and a good time was had by all.

Including us readers!

Reading that story in isolation, who could tell that Rob dialyses three times a week? No one!

Well done Rob, for proving once again that dialysis is the key to healthy living, not the end of it.

I had an interesting email from Lawrence recently, about the pros and cons of the various brands of dialysis machine:

Hi Greg

I’ve been dialysing for a year now on Fresenius machines and in the last few months have been doing home hemo on a Fresenius.  I’ve had constant issues with poor arterial pressures and alarms. The techies have been out to try and sort the problems and eventually decided that it must be my line which was the problem.  

This week I am on holiday and have been dialysing on a Braun machine.  What a difference!! I’ve been attaining pump speeds of 350 (I can barely make 300 on the Fresenius) and the arterial and venous pressures are brilliant! My KTV is 1.5.  

I communicated this to my unit who have been stonily silent on the subject.  Has anyone else come across this kind of difference?  I’d be interested to know.  The Braun seems a much superior machine to me, with far more streamlined tubing.  I’ve tried to research on the internet but can’t find any comparative studies on dialysis machines.

Best wishes, Lawrence

Hi Lawrence.  I don’t have a lot to contribute about various machines.  I dialyse on Gambro, which are fine.  I regularly achieve a pump speed of 370 milliLitres per minute (mL/min).  Gambro have the usual alarms and hassles, but do the job well for me.

On holidays I have dialysed on Fresenius, Braun and Nipro.  I have found that I don’t usually achieve more than about 350 on the Fresenius machines I use on holidays (through the nurses usually say that the Fresenius doesn’t need to go as fast to do a better job!).  Just the same, all seem fine to me, though technicians I have spoken to tend to rate Nipro a little behind all the others.

I have heard the NxStage machines tend to under dialyse because of their portable nature and use of limited water supply.

Regards, Greg

I look forward to hearing the thoughts from other BigD-ers!

We all hate rejection.  It hurts us somewhere deep inside.  And those of us who’ve had an organ transplant hate it most of all.  Because the only way to make all that pain go away is by taking a hearty (sometimes heroic) dose of anti-rejection drugs.

Rejection is driven by our body’s immune system, a collection of cells (T cells) that recognise and destroy foreign cells: germs, poisons, other bits that find their way into us. All cells have proteins called antigens on their surface.  As soon as these antigens enter our body, the immune system recognises that they are not from our body and attacks them.

When we receive an organ transplant, our immune system may detect that the antigens on the cells of the organ are not from our body or not “matched.”  Mismatched organs, or organs that are not matched closely enough, can trigger rejection.  To help prevent reaction, doctors type, or match both the organ donor and the person who is receiving the organ.  The closer the match the antigens are between the donor and recipient, the less likely that the organ will be rejected.

Anti-rejection drugs work by slowing down our body’s immune system.  But you can’t let up:  it’s like pressing our foot down on a spring: the moment you take it away, it bounces back to exactly where it was.  So once you have a transplant, you must take the drugs for as long as the transplant lasts (which can be decades).

The trouble is, anti-rejection drugs have side effects:

• With our immune system supressed, we catch every bug that’s passing by and because we have almost no resistance, the damage it can cause is massively exaggerated (where a person with a normal immune system may get a mild sniffle, we can easily end up with pneumonia)
• The drugs do things to us (give us moon heads, thin easy-tear skin, bruises from bumps a 90-pound weakling would brush aside, scramble our brains and our emotions and lots more).

But all this may change over the next few years (key dramatic, super up-beat music).

Re-writing the anti-rejection script

Dr Tracy Heng, Monash University Department of Anatomy and Developmental Biology

Last week I had the pleasure of interviewing Melbourne scientist from the Monash University Department of Anatomy and Developmental Biology.  Dr Heng and her colleagues from the Departments of Anatomy and Developmental Biology, and Immunology and the CSIRO are re-writing the anti-rejection script: this time eliminating the cause of rejection rather than stamping on the spring.

Put simply, they have found a way to make every donor kidney a perfect match for the recipient using the body’s own mechanism for teaching the immune system to recognise what is foreign versus local.  Of course it involves the wonder building blocks of all cells, stem cells.

How it works

During the normal course of events our immune system creates the T cells it needs from our bone marrow stem cells.  Dr Heng and her colleagues have found a way to introduce foreign bone marrow stem cells from the donor into the recipient’s bone marrow.  The stem cells mix with the locals and when they are converted into T cells, they have been “educated” to see all donor cells as a perfect match.  When the transplanted organ arrives there are no alarms; no attack; and no rejection.  This technique is called “tolerance induction”, whereby the recipient becomes tolerant to the donor organ.

The technique involves using a small dose of Busulfan (a chemotherapy drug usually given before a stem cell transplant for leukaemia) to slightly reduce the number of the recipient’s bone marrow stem cells, making space for the donor stem cells.  The stem cells are then transplanted into the recipient’s bone marrow combined with a small amount of anti-rejection drug for a few days to stop the donor stem cells being rejected.  The recipient is now ready for the transplant.

Good for the life of the transplant

The technique specifically replaces “long term” stem cells, to generate long lived, educated T cells that they expect to last at least as long as the recipient has their transplant.

Low impact and radiation-free

Dr Heng noted that a variant of this approach has been trialled in the US, using larger doses of chemotherapy drugs or radiation, which may not be suitable for the sick or elderly (both groups are heavily represented on transplant lists).  This new approach is a radiation free, way of producing the educated T cells.

Good for aged transplant recipients

Dr Heng started this research in 2009, and the team has conducted successful pre-clinical trials with both young and aged mice, despite age-related cell degeneration in the aged mice.  From a clinical viewpoint, this is especially important, as the majority of transplant recipients are older patients whose immune recovery might be dangerously slow and would benefit from a radiation-free, low impact conditioning technique that enables organ transplant without compromising their immune system.

The details were published in the 10 July 2014 edition of the American Journal of Transplantation. 

When can we line up?

Not for a few years.  There are many tests and trials to complete before it becomes a standard clinical treatment for transplants.  But the fact that the team is using drugs that are in use worldwide means there are no drug safety hurdles.  I’m betting it will certainly be the norm in my lifetime (I’m 62).

Of course, since the whole objective is to make each donor organ a perfect match for the recipient, this treatment is limited to live donor transplants.  Deceased donor transplants happen within hours of death, so there would (currently) be no time to condition the recipient’s stem cells.

Those who follow this blog know that I’ve had two transplants, one from my wife (bless her) and one from a deceased donor (bless him/her too).  Neither did particularly well, because it seems I can reject almost anything, regardless of the level of performance enhancement provided by anti-rejection drugs.

If this technique was available in 1995, I would now be swanning around with my wife’s kidney tucked safely under my right rib, the world as my oyster.  Sadly it was not to be.  But very soon, a whole new population of donor kidney (/ liver/ lungs/heart and most other body bit) recipients will be doing just that.  All thanks to wonderful, smart people like Tracy Heng and her colleagues.