Nzero entities

Operation Pink Nightie
Maria's Story
The Story Behind the Story

Operation Pink Nightie

Secretly, he was pleased to find he was still alive.

Top photo: Waking from the anaesthetic Dick signals that he's feeling OK. Secretly, he was pleased to find he was still alive.

Kidney transplants are in the news. Jonah's had one and a Pacific Islander with a violent record needs one. We take a look at what it's like to go through the kidney transplant programme with Allan Dick as the donor and Maria Tillman as the recipient.

July the 13 was finally the date for the kidney transplant operation. That was the date when I was wheeled into the operating theatre on the eighth floor of the new Auckland Hospital at Sam. Three hours later my left kidney was out, I was stitched up, wheeled out into the recovery ward and Maria Tillman was wheeled in to have the kidney inserted into her right side, just below the rib cage.

Initially, when we embarked on this journey midway through 2003 I was a bit uninvolved about the whole matter, feeling pretty remote and unattached about it.

I had known Maria about four years when I made the offer to donate a kidney. I wasn't particularly close to her but I had seen her life deteriorate pretty much before my eyes.

From an active, articulate, intelligent, if somewhat left-field woman, she had become miserable, unhappy, a prisoner of the thrice weekly dialysis and not coping at all well with the pain, the discomfort nor the myriad of increasingly savage side-effects and associated illnesses that seemed to go with it.

Family, husband, friends and loved-ones all offered a kidney, but they weren't compatible. For some reason, don't ask me how, I knew that I would be.

Without telling either Maria or her husband I had a blood test and my feelings were confirmed.

Keri and I invited Maria out for dinner to tell them. Peter was called away to attend to a scrub fire that was threatening their rural home so we went ahead with the dinner anyway.

When I told Maria I had a kidney for her, she didn't believe it, but convinced I was not joking, she firstly cried and then told half the people in the dining room.

When told, my friends and relatives fell into two groups. They either thought I was wonderful, or a fool — "why would you do it?"

I've always kept good health and always been a quick healer. My medical records will show I've had my tonsils and adenoids out twice and I've had two vasectomies. Maybe I will grow a new kidney!

But we still had a long, long way to go.

There were more tests, and then more tests that confirmed the earlier diagnosis. Then there were meetings with doctors, surgeons. All in all it was a bit of a grilling to ensure that I knew what I was in for.

I was a bit non-plussed by it all. Neither apprehensive, nor feeling as if I was doing the missionary work and worthy of sainthood.

The most interesting meeting was with a psychiatrist who wanted to ensure that I hadn't heard a voice in my head urging me to give up one of my kidneys. I hadn't, but the psychiatrist asked a lot of often aggressive and probing questions including one I had never asked myself — what if somewhere down the line one of my children needed a kidney? I didn't have an answer to that.

Green light. We were proceeding.

Initially it looked as though the operation might have been October or November last year. That suited me fine. I was told that:

a/1 was at the outer age limit for a kidney donor

b/1 was also at the outer limit of acceptance in terms of weight

c/That I should make a reasonably rapid physical recovery, but I was likely to be weak and tired for some weeks because it was quite intrusive surgery. And because my body was down to one kidney I might feel a bit seedy and rundown like a combination of the flu' and a hang-over until the single kidney got up to speed.

But the October date didn't happen. And then there were other delays including a shift of all surgery wards into the new Auckland Hospital building over Xmas.

A January date was booked.

But that was cancelled because Maria needed more tests.

A February date was cancelled for the same reason.

We got an April date and we both went and had our intensive last major checks and tests a week before the scheduled date.

I was fine, but Maria had a minor bladder infection.

Operation delayed at the last minute, indefinitely.

Maria went into steep decline.

Keri and I were invited to Maria and Peter's downtown apartment for a dinner and we were told that Maria had had enough. She was too ill. There had been mistakes made with her medication. There had been too many delays. She was too ill, too miserable and she said thanks but no thanks for my kidney and she was ending all treatment.

Maria wanted to die.


a (slow) walk taking his intravenous drip; Ward 71, home for three days.

 

 

Left: Later that evening he got up for a (slow) walk taking his intravenous drip and his catheter bag and went and had a nice cup of tea.

 

Lower: Ward 71, Room 7, Bed D — home for three days.


I was angry with Maria, with Peter and with the whole medical system.

I let it be known. I felt Maria wasn't fighting for life strongly enough and I was aware that there had been some shortcomings in her care and I too had found the hospital system a bit vague and lacking in communication.

Maria's decision to die created a wave of concern. She was counseled and her medication was changed, her health improved and she decided to give it another go.

In May we were given September 15 as the new date for the operation. Maria had mixed feelings. She was pleased it was still on, but annoyed it was so far off.

I was also a bit keen to get this over and done with. My life had gone on hold. I hadn't been able to take a holiday or any sort of meaningful break for more than a year.

I was also promising myself to loose some of the weight that I had put on many years ago when I had become a hypocritical reformed smoker.

But in Mid-June, in Hawkes Bay researching the feature that appears in this issue, I got a phone call from the kidney transplant team to say that there'd been a cancellation and that July 13th was available. Maria was asked first as her husband Peter was going to be in Europe on a private visit. Maria seized at the date.

It was actually a bit early for me, coming right in the middle of one of the busiest times of the year for me, but I had to make it work.

We had to go through the final test regime a week out from the operation all over again. This time, no last minute hiccups.

Because Maria's health was a bit frail she was admitted on Sunday the 11th and I was supposed to be in at 2pm on Monday the 12th. But I was late and didn't get there until 4:30pm and it was straight up to Ward 71 where I was to share a room with three other beds, two of which were occupied — one by John Lewis and the other by an elderly gentleman who was to die two days after I was discharged.

John Lewis was a character. He'd had a kidney transplant two months earlier and there had been complications, which were slow to overcome. John was eternally cheerful and cheeky. A nice bloke and a character.

I'm not a person who likes bed, but for this occasion Keri had bought me two pairs of pajamas and a pair of slippers — the first of either I've owned since childhood.

Reluctantly I got into the 'jammies and was told it was "nil by mouth" for me after midnight, so we toddled down to the Muffin Break cafe on the fifth floor and had a pie and a coffee.

At around 8.00pm a nurse came in and put a "lure" into the back of my left hand to which was hooked up an intravenous drip and I was told I needed an enema. God, I hadn't had one of those since pre-school days when Scottish mother insisted on giving me one twice a year whether I needed it or not.

"I can either give it to you," said the nurse. "Or you can give it yourself."

I chose the latter.

It turned out to be a small plastic bubble of some sort of laxative with a nozzle rather than the old enamel container that my mother filled with warm, soapy water, with a length of red rubber hose that terrified me as a child.

It was easy really.

Mission accomplished, I then had a visit from Richard Harmann, the surgeon. It was our first visit and he eyed my cuddly shape with some disapproval. "It would be better if you were a bit lighter — but we'll see what we can do."

He explained the procedure to me and went off into the night saying I would be in the theatre asleep and ready for him next morning, but he would pop in later in the day to see how I was.

"Okey dokey," I replied.

I still wasn't nervous.

I strolled over to the old wing of the hospital where Maria was undergoing what should have been her last dialysis and she wasn't enjoying it at all.

Dialysis may give life, but there is a high cost.

Before going to bed for the night I was fitted with a set of tight, white stockings to prevent blood clots — something that is gaining favour with long distance aircraft passengers apparently.

Next morning I was up at 6:30, unhooked from the drip and then showering and scrubbing and getting into the traditional hospital gown. I was then plugged back into the drip. No breakfast but at 7:15 Keri and her nephew Jude arrived to be there for both Maria and I.

Sharp at 7:45 two nurses arrived and wheeled me, on my bed, along the corridor to the lift and up a floor to the 'prep room.

We were the first customers of the day and I had the process explained again.

The last time I had been in an operating theatre under general anaesthetic was when I was nine and had my adenoids out for the second time. I remember the mask and the chloroform or ether being dripped onto the mask and the frightening delusions I suffered both going under and coming out and the awful hangover I had for a day or so afterwards.

I was assured this would be different.

The preparation ward was filling up — other patients for surgery were wheeled in and surrounded by doctors and nurses.

Keri and Jude were still with me and it all got a bit much for Jude who fainted and became the centre of attention, fussed over by the prettiest of the nurses.

By now I was beginning to feel some apprehension. I generally like to be in control, but I reminded myself that when I fly to London, or Frankfurt I put myself in the hands of pilots who are trained to fly Boeing 747s.

So I relaxed.

Keri kissed me farewell. I waved to Jude who was grinning cheekily on his own bed and quite alert again by now and off we went into the operating theatre.

I was transferred from my bed onto the operating theatre, I watched as the clear anaesthetic was injected into the lure and I lay back wondering how long it would take, and what I would feel.

Hardly had my head hit the bed than I became to feel really floaty, I started to say, "Hey that feels goooooooo - o -o". And that was that.

Because I have some resistance to illness as well as medication I was fearful of only going half under and being aware of what was going on around me, and feeling the knife — because it does happen.

Then I was aware of noise and conversation and bustling sounds and I tried to fight it — I tried to go back into a deep sleep because I was convinced that it was only two minutes since they had given me the injection.

But then a vision in the shape of a lovely young Russian (I asked) nurse came into focus and I was told the operation was over and I was in recovery.

Normally visitors aren't allowed in recovery but because Keri was next door in Preparation holding Maria's hand, she was allowed in to Recovery to hold mine after Maria went into the theatre.

I stayed there for an hour and was then wheeled back to the lift, down a floor and back into my room.

It was a room that had bloomed with flowers and cards during my absence.

I was surprised at how normal I felt. I was flat on my back; I had the drip back in my arm and I had a catheter in my willy connected to a sample bag. They wanted to keep a check on how the single kidney was functioning. I still wore the sexless white stockings and the sexless hospital gown.

Maria's surgeon poked his head around the door — "Maria's just going into recovery now. The operation's been successful; the kidney started to function immediately. Good luck."

I can't even begin to tell you what that meant. For the first time I felt emotional about it. My only wish was that Maria's husband Peter had been there with her.

Keri stayed with me and my close mate Gavin dropped by with Jude in tow. Jude had decided he didn't want too much to do with medical matters, he didn't want to see the lure, the tubes, the catheter and he certainly didn't want to look when I decided to have a look and see what my tummy looked like.

I had three large "sticking plasters" — one vertically below my navel and two smaller ones on my left side. I was surprised that I hadn't been shaved.

I was still slurring a bit, but alert and surprisingly comfortable.

A nurse came in — "How is the pain?"

"Okay," I replied.

"Give me a score out of 10."

"When I'm lying still, about 1, when I move and try to sit up, I can feel it, say five."

Apparently the five translated as (eight) because the next thing she's back — "This is for the nausea," she said as one injection went into the lure ("Funny," I thought. "I don't feel nauseous.").

"And this is for the pain," as another injection went into the lure.

Morphine kills pain, gives you a high but you end up feeling very, very queasy, apparently, which was what this was all about.

The shot of morphine sent me off to La-La land so much so that I couldn't make sense of anything.

So Gavin and Jude went off in search of someone sane.

I slept for an hour or two, came to; Keri was still there when I awoke.

I didn't feel like eating but I my mouth was incredibly dry. I drank copiously, but because of the catheter didn't have to worry about the toilet.

Surgeon Richard Harmann came in looked me over and I asked why I had three wounds.

The major one — about three inches long vertically from my navel was where he put his hand inside my body, felt his way past all of the other bits and pieces and grasped the kidney.

The upper small incision in my side was where he put a probe with a small camera to he could watch goings on a TV screen. The lower incision was where he inserted his small, electrically operated multi-tool with interchangeable head.

So, holding my kidney with one hand, looking at what he was doing on the TV screen, he set to clipping the arteries, stitching them up and freeing the kidney. When it was free he removed it through the opening in the front and stitched me up using soluble stitches.

After he departed I decided I'd had enough of bed.

It took five minutes to get out but I made it and standing wasn't too bad at all. So we went for a walk — Keri, my drip, my catheter and me. I got to enjoy it. We walked up and down the corridor. Slowly. Then did it again.

Then stopped and had a cup of tea at the refreshment station. And walked some more.

Keri left about 10:30 and I settled down for the night.

As well as the drip, they also hooked me up to a morphine supply where you could help yourself to small amounts of the drug at five minute intervals.

I didn't like the morphine. In fact that night I also refused any other painkillers as I felt okay.

Next day though I decided that I would take their suggested mix of two Panadol and one Tramadol every six hours.

Next morning I was off the drip but still on the catheter. Because I could now eat and drink as I wanted, I showered, changed into my pajamas, put on my slippers and took my catheter and bag for a walk down to the Muffin Break on the fifth floor where I had a small savoury and a bottle of ginger beer. I saw the pretty Russian nurse who had been my first vision when I had awoken the previous day and she was amazed to see me up and not just out of bed but out shopping.

Dick relaxes and reads John Banks biography

 

Top: Day 1 and dressed in his brand new pajamas, Dick relaxes and reads John Banks biography. He found it a good read as it gives a remarkable insight into this complex character.


Lower: Waiting to go into the operating theatre Dick, now scrubbed and dressed in hospital issue gown and tight white stockings, points out that the latter actually have no soles. Nice legs though!


I spent the rest of the day reading and watching DVDs on a small DVD player I had bought six months earlier but never used.

I was beginning to get bored.

It was sore getting in and out of bed, but apart from that the only other thing that was a bother was the catheter.

A Scottish nurse with a lovely accent attended to that. With her hands modestly under the blankets she told me to count aloud to three and then cough. The coughing was actually the hard part as it strained my tummy and made my eyes water a bit.

But out came the catheter and I was a free man.

Because I was making such good progress they didn't get me to pee into a bottle to measure the kidney's urine output, instead they just asked me to monitor it.

It was all working fine. If I drank, an hour or so later I would pee. Good as gold.

By now Maria was down out of intensive care and had her own room so I mooched in and out to see her. She was already looking better. Her eyes, which had been dead of expression for two years, were alive and vital. She wouldn't stop talking and was making plans for an extensive garden at her rural property.

Peter was in touch from the U.K. every day.

Next morning, after the "rounds" at around 9:30 I was told I could go. My discharge papers were handed to me; I packed up and left.

That was that. Pretty much an anti-climax.

In the aftermath of the Jonah Lomu transplant the media went into overdrive and kidney transplants became Big News. But in all honesty, people like Grant Keremea and me are no big deal.

In the two and a bit days I was in ward 71 there was also a wife donating a kidney to her husband and a young mother donating a kidney to her two year old son. I have turned my experience into a story; the media turned the Lomu/Keremea event into a media frenzy.

The stories of the wife and the young mum are being repeated a hundred or more times each year. I wish I could tell their stories as well.

For me, there was four or five days of decreasing discomfort helped by two Panadol every six hours for the next week.

The operation was on Tuesday morning. I was walking that night. I was discharged on Thursday morning.

I went to the office on Friday. I watched the rugby and drank beer on Saturday night, went out for brunch on Sunday and came home to mow the lawn.

On Monday I went back to work, albeit on shortened hours. Now, three weeks after the event, the scars have all but healed completely and I can say that, generally, I feel no different.

I had some mood swings, and I am still inclined to get a little tired. But I can feel no difference at all within my body. I still drink and I still pee.

I need a break though. Because of the delays and the uncertainty of the past year I haven't been able to take a holiday. So this issue of NZ Today is going to the printers, and I'm off to northern Queensland for a week.

— Allan Dick

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MARIA'S STORY

Maria went in for what was hopefully her last dialysis

The last dialysis? On the eve of the operation Maria went in for what was hopefully her last dialysis. Note tubes into her chest.

It all started when I had bought twelve petunias to plant. I had one in the ground and then I realised I could not plant another as I was too breathless. I struggled indoors and rang the local surgery for an appointment with the doctor. So began the long and painful road that leads to this chance of having a second go at living life. I had known for thirty years that I had inherited Polycystic Kidneys from my father. The disease, PKD, is the most common of the major inherited causes of kidney failure. It is a dominant inheritance pattern as only one parent needs to carry one unit of the DNA (PKD1) on chromosome 16 (85%) or chromosome 4 (PKD2) (15%) for PKD to be transmitted to the next generation; there is a 1 in 2 chance of inheriting it (though in our family five out of six got it and both my children have it). About 70% of children inheriting the gene will go onto develop kidney failure at some stage in their life, usually between 40 and 60 years of age.

As the name implies, the disease begins with cavities (cysts) filled with clear fluid which begin to grow in the kidney getting larger over the years, so that they can be felt in the side of the abdomen. As the cysts grow in size and number (poly=many) and the kidney gets larger, the capsule lining the kidney stretches leading to discomfort or frank pain. The liver and pancreas can also become involved.

As these organs get larger they push others out of the way and so if the stomach is compressed, the side effects of nausea, vomiting, acid burning in the throat (reflux), similar to a stomach ulcer can result. If the cysts burst then infection can develop or blood can be found in the urine and this is often the first indication of the disease. High blood pressure is another serious problem with PKD.

Perhaps the most serious complication is the development of small swellings in the blood vessels of the brain which can "pop" and bleed into the brain resulting in a stroke. Luckily my youngest sister was caught just in time and had the leaking vessel tied without any adverse side effects. Families with PKD are now screened for these problems using Ultra Sound and MRI Scans together with laboratory test.

My brother died last year in Malaysia with the disease, aged 56, although he worked for 30 years as a journalist, and married and raised a family in Sarawak, when it came time for him to go on the life saving dialysis machines he was told they were only available for Malaysians.

My life up till now was a hardworking one, and I had put a lot of stress on my body, especially when I worked in Romania in 1990/ 1991 after the downfall of Ceausescu. I was looking after mentally and physically disabled children in most adverse conditions and had to wear boots to use the blocked toilets!

I won't go into details but I will say I once did not urinate over a period of 30 hours! I also played hard, scuba diving and I suffered badly on my first lesson in the ocean at Jersey. My equipment was leaky and I was swallowing water which I later found was thick with faeces. When I became an advanced diver, I went very deep, especially when I was exploring sunken ships. All this I believe was not conducive to helping my kidneys.

So since October 1999, when tests showed my creatinine and urea levels were proving that my kidneys were not doing what they should, I have gone the path of feeling more dead than alive. Indeed I have asked Hospice twice to help me on the way. However if you have a daughter saying "I need you Mum, I am having a baby", you try again.

Thank goodness I did, as my daughter asked me to be a support person, along with her husband at the birth of my grand daughter.

Allan Dick and Maria

Top. Allan Dick and Maria together before the operation.

Lower. Happier times. Although ill, this photograph of Maria was taken before she went on to full-time dialysis. She's with her friend Keri — and a yellow Porsche!

Brave smile. Maria

Brave smile. Maria looks cheerful in the preparation room just before being wheeled into the operating theatre. "I couldn't wait to have this operation," she said

I spent the whole time on a bean bag as my knees were too weak to support me. But with the last thrust I sprang to my feet, and cried out "Shelly it's a baby! You've got a baby".

And so I have experienced the greatest thrill and honour of my life and watching that babe grow into an incredible little person. This alone has been worth all the pain, operations, needles etcetera. I could write a book about what it's like to be in this position — a very negative book.

I want to tell you about Professor Stephen Munn who will be the one to place Allan's kidney into me. He is a truly professional and talented man. Also he is so kind and has a gifted way of explaining aspects of the disease, and how the operation will be done. I have no fears at all of the operation.

During my many times in Auckland Hospital, it has been a privilege to get to know the doctors and nurses who have moved to New Zealand from China, Korea, India, and the Philippines to work in the Haemo Dialysis Centre.

I appreciate the amazingly compassionate way they go about attaching me onto the dialysis machines that clean my blood three times a week. Often I am crying, as I suffer from needlephobia.

I am ashamed to say the first time they put the huge needles into my arm, it took four of them to cope with me. In time I realised that as their hands are all very small, it was like having butterflies fluttering over the intricate workings of the machine and the lines that came out of my chest and the needles. They were so quick and nimble and the fear of pulling at the fresh wound vanished. They also seemed to know before myself that something was not right, like offering me an extra blanket as I was getting cold.

I met Allan Dick four years ago. He is a workaholic, often starting work at 9am and finishing at 8pm. Also, he is always under pressure to put a magazine to bed — three of them. He travels incessantly for these magazines.

My friend, Keri, had fallen in love with him and we were introduced. Whenever I visited, he was tired and rushing off to bed. Or grumpy. Or complaining about some problem. I could not see us forming any meaningful friendship. Now he is saving my life by giving me a kidney. I cannot say too much of my feelings, because he does not like been praised, or admired openly and as the editor of this magazine, he will just edit my words out. But when he told me of his gift to me, I was stunned.

My husband Peter, who has been by my side, supporting me, had offered his kidney, also my friends, Keri and Joan, plus my mother and my ex-husband had also offered theirs. But they weren't compatible. There were many more tests for me, but more so for Allan.

Every day, I feel that this cannot be happening, it's like I have the chance to be born all over again. What wonderful plans we are making, knowing that I shall have, again the energy to carry them out.

— Maria Tillman

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THE STORY BEHIND THE STORY

Let's play make-believe. You are the Minister of Health, it's budget time and you are meeting with Professor Stephen Munn, director of liver and kidney transplant surgery at Auckland Hospital, to discuss what to do about the 1500 New Zealanders on kidney dialysis treatment.

It costs $75 million every year to keep all patients on dialysis, but if all of them were to receive a kidney transplant tomorrow, the bill would fetch somewhere around $105 million. That, by simple arithmetic, is an extra $30 million.

Look ahead five years. If the number of patients receiving dialysis treatment never increased and they stayed on dialysis awaiting transplantation, the cost would mount to $375 million. If all 1500 had their transplant in year one, the bill would still stay hovering around $105 million.

Hang on a minute - that's savings of $270 million over five years! Plus, all the patients that receive kidney transplants would not have to give up more than half of their waking lives hooked up to needles or catheters for hours on end in order to breathe amongst the rest of us. Chances are they will enjoy a more fruitful, quality existence, might even get to see the grandkids graduate from university. Eureka!

If only it were that easy. Of course, this situation only touches on the complexities that shroud organ transplantation and donations in New Zealand. There are numerous, often contradictory, factors that come into play when trying to ease an appallingly high rate of patients waiting for kidney transplants in the country and many of the 1500 will never get a transplant, for various reasons.

But, said Dr Munn, the shortage of both live and deceased kidney donors is taking its toll. And as renal failure is an ageing affliction and we are an ageing population, it's only going to get worse.

Currently, there are 350 people waiting for a kidney transplant because they have developed renal failure as a result of prolonged kidney disease — of which the most common in New Zealand is diabetes.

The kidney transplantation programmes run in Wellington, Christchurch and Auckland receive around 40 donors from the nation's intensive care units and around 30 live donors come forward — equating to 110 kidneys to use for transplantation.

Aside from the fact that supply doesn't even meet half the demand, there are further complications. The donor kidney must be compatible in terms of blood and tissue type with the patient, so many sufferers fall through the cracks.

"There are a group of patients who don't have any live donor prospects and they're just waiting for a transplant, and that might take three years on average to get a kidney on the waiting list. Or for some reason, they're a little sick — they're older and they've got some heart disease or something that couldn't tolerate a transplant. They'll never get a transplant. They'll just stay on dialysis for the rest of their lives."

And dialysis is just as gruesome and clinical as it sounds. Patients either undergo haemodialysis, where an artificial kidney is used. Needles connected to main arteries are connected to tubes that carry the patient's blood to the artificial kidney where it is cleaned and returned to the body — a procedure which eats up an uncomfortable three or four hours, three times per week.

Or, they undergo peratoneal dialysis, where they are rigged up to a catheter, which is continuously filled and drained of fluid, up to five times a day, every day.

But why, dear God WHY, are New Zealanders so ambivalent when it comes to donating organs?

There are two sources of kidney for transplant — from a live donor, or from a cadaver. It's an unpleasant word, but there it is — — cadaver.

Either way, we come up poorly by international standards. Only 10 per million of us donate kidneys, where it's twice that in the United States and nearly three times that in Spain.

"Around the world, after a loved one has died, saying 'yes' to giving organs is an altruistic thing. People don't get paid for it — they either agree to do it or they don't."

It seems New Zealanders are bound by strict religious and social values. For instance, in the case of Maori, cultural and spiritual traditions dictate that the body be made available to relatives as soon as possible after death and any delay between the time of death and the beginning of the tangi is insensitive to Maori needs. Although Maori are increasing (albeit painfully slowly) to a 16 per cent likelihood of donating their organs after death, Causasians and Asians are still out-stripping that statistic at 70 per cent and 50 per cent, respectively.

Approaching the family of a deceased love one is an extremely volatile and sensitive issue. Two years ago, an intensive care doctor undertook a study of all the deaths that occurred throughout all the intensive care units in the country to examine the low rate of cadaveric organ donations.

What he found was either that a/ the families refused consent b/ the families were never approached or c/ the intensive care doctor in charge made a decision without consulting the transplant unit that, based on a known condition, the body would not have been suitable for organ transplantation.

"Some of it is miscommunication, but the consent issue is real. Overall, there's probably only about 60 per cent of families that say yes to organ transplantation," Dr Munn said.

A dialysis machine

A dialysis machine — essentially an artificial kidney. Needles are placed permanently into major arteries in a part of the body suited to the individual patient. During dialysis, usually three times a week, the needles are hooked up to tubes and over a period of six hours, all of the patient's blood is pumped from the body, through the dialysis machine where it's filtered and cleaned of all impurities and toxins and returned to the body

Interestingly, under the Human Tissue Act 1964, if a person is declared braindead in any public hospital throughout the country, the body then becomes the lawful possession of the medical superintendent or chief medical officer of that hospital, hospital board or district health board. Translated, that means that intensive care " doctors are not legally required to seek consent from grieving families in the removal of organs.

"Although we don't have to ask for consent from the family, we always do because we have to know that the family's comfortable with this. If we ever did it against the wishes of the family, then I'm quite sure that's the last organ donor we would ever get in the country," Dr Munn said.

The only recognised method of ascertaining whether someone is a donor or not is whether they have ticked 'yes' next to the donor box on their drivers license application. There is no option for 'no', so in these instances, the grieving family has an enormously difficult and emotional judgement call to make on whether the deceased would have agreed to donating their organs or not. Even if the deceased had agreed, it would only take one family to object and it would not go ahead.

Then, there are the very few live donors. Kidneys aren't the only organ people can donate when alive - you can also donate half of your liver and a piece of your lung. But again, we're lagging behind.

Money talks and Dr Munn has landed himself in hot water with right-wing moralists for the suggestion that New Zealanders need a cash incentive to encourage more live donors. After all, there are enormous risks involved, other than the one in 3000 risk that donating your kidney will cost you your life.

"There's a much bigger risk that they'll get troubled with other complications. They'll get a wound infection, or a lot of pain, or chest infection - not life threatening, but nuisance-type complications. They might have to stay in hospital longer, or it might keep them off work for longer," Dr Munn said.

He has encountered numerous self-employed live donors and says it's a "big deal" for them to take the time off from their business to donate a kidney, as well as the pain and suffering involved.

"They have to travel here, often from out of town, they have to stay somewhere overnight and they have to give up their income for the period they are off work. And they have to foot the bill themselves. There's absolutely no payment for them at all. So, in the very least, I think what ought to be done is that they be reimbursed for their out-of-pocket expenses. You and I actually benefit from them donating because somebody, somewhere in the country comes off dialysis."

But it's a shady and emotionally-charged issue. The general feedback from visiting everyone from medical groups to church groups is that New Zealanders think it is fair to reimburse live organ donors for their costs. After all, we pay people to undergo jury service. But there is a fuzzy line somewhere where reimbursement crosses over into profit for the donor. Dr Munn thinks the ball park figure of $5000 per donor to cover transport, accommodation and loss of income is a small price to pay for their kidney.

"But, as soon as I mentioned that, people see that as commerce in organs, selling their organ, and they find that morally repugnant to sell a part of themselves". Hmm, yet voted to legalise prostitution. Oh, the irony.

Moral or not, paying for organs gets results. It worked in Iran. During the revolution years, dialysis became unavailable and the Iranian government went open slather, offering $2000+ per live kidney donor. Some 36,000 kidney transplants were performed in that time, effectively wiping the nation's waiting list. Iranian kidneys for Iranian people and it was impossible to travel there as an outsider and buy one.

But, Dr Munn reckons that New Zealanders are still adverse to the concept and it would take a huge mindset shift to get anywhere near such a seemingly radical mode of thinking.

In the meantime, 350 people wait and wait for new kidneys.

Like Maria Tillman — the recipient of NZ Today editor Allan Dick's kidney.

— Erena Hodgkinson

a postscript, ongoing struggles

NZ TODAY - issue 11 - 2004

PPS

Maria (Wendy) Heaton Cooper Tillman was born March 15, 1945 and died August 8, 2004 following a live donor kidney transplant operation.

She was the daughter of Percy William Heaton (1913 - 1984) and Francis Phillips (1921 - 2007).

 

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