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Kidney Transplant : a Personal Testimony
by Jon Sandifer, MRSST, RCFSS |
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What do you do when you're a successful alternative health consultant and you suddenly discover you have a potentially fatal disease? In 1987 Jon was director of the Kushi Institute at London's East/West Centre, teaching and practising macrobiotics, Shiatsu and Feng Shui. It was also the year in which he learned he had a serious illness - Adult Hereditary Polycystic Kidney Disease to be precise - a genetic disorder which only begins to show symptoms in early middle age. "It was a major shock, not just to me and my family but also to my colleagues and students and clients. If you're a health professional and you get a major disease, it's as if you've screwed up, big time."
His first reaction was the most common one - denial. He refused to think of a future in which he might be seriously ill, and continued to live as if it wasn't happening. But year by year the condition worsened until, in acute pain, he experienced renal failure and had to begin dialysis. This was a do-it-yourself sort called peritoneal dialysis, which involves wearing a tube permanently inserted into the abdomen.
You're that Shiatsu Man, aren't you?
By coincidence, the hospital he went to for the catheter to be fitted was one at which he'd given a talk five years before. Recognising him, the doctor said "You're that Shiatsu man, aren't you?" and turning to the attending medical students said, "before I put this catheter into Mr Sandifer's gut, I'm going to ask if there are any meridians I should avoid?" Jon pointed out the Conception Vessel and Kidney Channels which run down the front of the abdomen. "The doctor carefully avoided those two areas, and then the knife went in."
The experience of dialysis itself was not so jolly. Peritoneal dialysis is self-administered four times a day and is very prone to infection. In two-and-a-half years he had peritonitis four times and suffered four major hernias. "All through that time of nightmares, the dream was to have a transplant, but because I was a fairly rare blood type I was told I might have to wait up to nine years for a cadaver kidney" -as they are euphemistically called. Doctors advised him to check his relatives for a potential donor and when his younger sister Mary turned out to be a good match the decision was an easy one for her to take. As she puts it, "I know he might have to spend years on dialysis and I was sitting there with two healthy kidneys, in good health myself; I felt I had something to offer, to give away to help Jon."
 Kidney courage
It wasn't only his sister's courage that inspired Jon, but also that of his fellow patient. "There was courage there that I hadn't seen in the outside world, which at first I thought was strange because the emotion associated with Kidney imbalance in Chinese medicine is fear. Maybe the people who had most fear hadn't survived to that stage, but the people I met on the ward really knew how to stick together and help each other. When someone died it really affected the mood of the whole ward - like soldiers in the trenches," says Jon.
His own fears were about whether the kidney would work, and how the transplant would affect his sister. As for the surgery itself, he'd had six operations in three years and through hard experience has overcome his I fear. "My first experience of surgery frightened me a great deal. Through my work I'd become very sensitive to "chi" and suddenly there I was in a hospital that reminded me of the Crimean war, a guy dying in the next bed, really bad food, a really tough environment. Looking back, I realize I needed to go through that process to prepare me for the rigours of the transplant - it made me more Yang as a person. In that sense I'm grateful to the infections and the surgery for preparing me for the big one - the transplant."
Practically cutting you in half
Jon decided he would like a colleague to be there when he woke up to help with the healing process. When he asked the hospital if they believed in alternative medicine, they said "no". When he asked if they thought it could do any harm, the answer was also "no", "So you won't mind," Jon asked, "if I ask a friend to work on me immediately after the transplant?" There was no objection, as long as the post-operative tubes were not disturbed.
Mary prepared herself for surgery by seeing an acupuncturist who also gave her flower essences and arnica and taught her some healing visualizations, The only warning she has for anyone considering donating to a relative (which is the only kind of live kidney donation allowed in this country) is to be realistic about the post-operative pain, Since the kidney lies deep inside the body and has to be removed in perfect condition, the surgery involves cutting the donor practically in half on one side of the body. The cut begins below the ribs on the back and runs all the way round to the groin at the front. She admits that the first three days of recovery were "very uncomfortable" - clearly a heroic understatement.
To pee or not to pee
The only thing she describes as "agony" was not being able to pass water once the post-operative catheter had been removed. "I was bursting to go to the loo for hours and had to insist they put the catheter back in." She also had bad constipation since her bowel had been moved about so much in surgery that it went into prolonged spasm. Acupuncture, reiki and reflexology helped her to deal with these problems. "Gradually I could sit up in spite of the muscle pain and I made myself walk about as much as possible."
Here's your new kidney
Jon remembers the day of the transplant vividly. He noted it was the day of the solstice, 21st June 1995. "The only difficulty for me was seeing my sister being wheeled off for surgery and I spent an anxious two-and-a-half hours pacing up and down. There was an old lady with pain in her leg and I was giving her Shiatsu to distract myself. I asked not to have the pre-med, which is just like a sleeping pill to make you dozy before the anaesthetic. I wanted to be as awake as I could up to the last minute so I refused to lie down on the trolley as they wheeled me to the surgery. I was sitting up Japanese meditation style. I must have looked stupid because I remember the people in the lift looking at me and saying to them 'Hi, I'm Jon, I'm going for a transplant'. I remember getting some really positive energy from that.
The surgeon was amazed to see me wide awake as I came into the anaesthetic room, being a nuisance and asking questions. Mary was just being taken out and he said her surgery had gone really well. We chatted a bit and through the window I could see the bowl that contained my new kidney waiting for me in the operating theatre. Then came the anaesthetic and the next thing I remember was waking up to see a shadowy figure at the end of the bed."
The colleague Jon asked to be there when he first came round was Phil Tofts, a Shiatsu practitioner and acupuncturist with a strong, quiet, stoical presence, "a bit like a samurai", says Jon. "To see my old friend Phil at the bottom of the bed as I came round from surgery was so good." (In a tragic turn of fate, Phil was recently involved in a road accident and lost his life.)
How to be a patient
It was soon obvious that both Jon and Mary's careful preparations may have had an effect. Jon was out of bed twelve hours after the operation and home in six days. "It's maybe the only kind of operation you come out of feeling immediately better. Twelve hours after the surgery my blood was normal again as the new kidney began to function. In fact, the surgeon had taken notes during the operation, with exclamation marks to show his surprise at how soon the kidney was pumping out urine after being stitched into place. I've never had so much pleasure in seeing a bag of urine filling up beside my bed."
Jon has a four point check-list for anyone who wants to use alternative medicine to help them through a major operation:
1. When dealing with the medical professionals, avoid getting their back up with too many requests and objections.
2. Quietly get on with anything you need for yourself- make polite but firm requests about diet or the alternative therapies you'd like in the hospital.
3. Avoid being rigid and dogmatic in dealing with the medical people. That kind of rigidity is probably coming from your own fear, and can only be dealt with by you.
4. Realize that deep down they're on your side -"once you start working together with the medical people and building bridges of trust then real magic happens."
Before the operation he spoke to people who'd had organs successfully transplanted from cadavers. Many of them had been very clear about the need to 'connect' with the new organ, and to express their acceptance and gratitude at some spiritual level. He also learned that another group of transplant survivors are those who seem totally insensitive to the whole experience, proof that sometimes denial is its own reward!
One of the things, which helped him most, he reckons, was giving the kidney a name. Seeing the All Blacks playing in the rugby World Cup just before the operation he named it after their unstoppable star, Jonah Lomu. There is a lesson somewhere in the fact that Lomu himself was diagnosed the following year with kidney illness and now campaigns actively for various kidney patient organisations.
Share a kidney-change your life
"I regard it as my kidney now, not Mary's," Jon says, and his sister he regards as "a saint, though she does remind me sometimes to take care of this one because she's not going to give me her other kidney!" And life with one kidney for Mary? "Not a problem!", she says matter-of-factly. She doesn't have to go the 100 any more or less often and apart from a little pain if she twists around at an awkward angle and some adhesions from the surgery, it hasn't affected her health in any way. What she did get was a major change for the better, and- as so often happens -it started out with a shock. Three days after the operation, still lying in her hospital bed, she heard she'd been made redundant. The two-and-a-half months of convalescence gave her time to re-think her life and she'd been so impressed by the help she'd had from wholistic therapies that she decided to learn reflexology, which she now practices.
The transplant also gave Jon the chance to make a major life change. Medically speaking, a year must pass before the operation can be considered a success. When that year was up he asked himself what he could contribute to the world in return for his new kidney and the new life it had brought him. He realized that it was time to have a go at something he'd always wanted to do. "Rather than burn myself out teaching, travelling and treating, I decided I'd become an author. I sent three outlines to three different publisher and they all said 'yes'. He's now published four books on Feng Shui, acupressure, health and astrology and has a fifth coming out called Feng Shui Journey, his most ambitious so far.
Inner Feng Shui
Though wary of very fashionable flavour-of-the-month status, Jon finds that on the short course he teaches at least ten per cent of the people are interested in what he calls "inner Feng Shui" -in other words "people who are ready to hear that Feng Shui is about more than hanging up crystals and wind-chimes in the right places, people who realize that ultimately it means being responsible for their own life."
Nowadays as a health practitioner, he finds his kidney transplant invaluable in reaching across the gap of fear to clients who may need help in accepting that responsibility.
Smell the fear and do it anyway
In his early days as a macrobiotic practitioner he says, speaking at a measured pace which seems to transcribe itself directly onto the page, "when people approached me with serious health problems I was always curious as to why they'd chosen macrobiotics as opposed to conventional medicine. I would sniff out what the real reason was. Sometimes it was out of real intuition, or they were inspired by someone they knew, but in most cases it was out of fear - the fear of conventional medicine, of hospitals, of doctor, of drugs, of surgery. These individuals, I believe, felt that alternative medicine would be a softer option. The truth is, if you take this path you take far higher responsibility for the self-healing process."
In those days I used to play devil's advocate when I smelt that fear. Nowadays, because I've been through conventional medicine myself, I can share my story with clients to reassure them that it's not something to be frightened of. Ultimately, unless you face any fear in your life and deal with it, I promise you it comes back on another level or in another form. Until that fear or that problem is resolved, understood, accepted, dealt with, until you've learned the lesson that you need to learn."
That neat switch from perceptive practitioner to Feng Shui guru gives a hint as to how Jon has become so successful so quickly in the competitive world of self-help publishing. Like William Spear, one of his mentors in Feng Shui, he is good at explaining ancient eastern theories to the modern western mind. As for his own fears now, transplant technology has developed so rapidly that where once his new kidney might have lasted for ten years the doctors now say it should be good for the rest of his life, as long as he continues to take his anti-rejection drugs. "I have no fears now of doctors or surgery and I'd like to be able to say that if this kidney packed up tomorrow I wouldn't be frightened. Of course I would be, but I'm sure that because of what I've been through I' d be far better able to cope."
To anyone in the same situation, whether considering a transplant or relatives faced with the choice of donating a kidney. Jon is emphatic that it is worth taking the risk: "If people could see the transformation in a recipient's life, how in a matter of hours they change back into a healthy human being firing on all cylinders, it's mind-blowing."
A selfish privilege
Maybe some of the clues to a successful kidney transplant lie in Mary's attitude as much as Jon's. In retrospect she is very straightforward about the whole experience. Robustly healthy herself, she understood the risks without dwelling on them and came from a position of optimism, generosity and, as she points out, self-interest.
"People tend to see a transplant as a one-way thing, as if donating a kidney is a wonderful thing to do, but there's a selfish aspect because I've gained from it too. I've got my brother back. It's been amazing to witness him fully recover his health, and a privilege to have been able to play a part in that. He's got his life back and that just doesn't have a price on it."
Jon Sandifer writes the regular Feng Shui Newsletter for the Site.
© Copyright Wholistic Research Company 2001
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