'I gave a kidney to my wife - but a bungled op meant it was all in vain'

[Clark]

http://www.dailymail.co.uk/health/article-2927322/I-gave-kidney-wife-bungled-op-meant-vain-Mail-s-GP-reveals-extract-gripping-new-book.html

'I gave a kidney to my wife - but a bungled op meant it was all in vain': The Mail's GP reveals all in an extract from his gripping new book
Dr Martin Scurr reveals all in book Doctors Dissected, out Jan 29
He tells Good Health how his wife Glynis was diagnosed with rickets
She had renal osteodystrophy, where kidney malfunction affects the bones
Glynis became very ill at 42, and husband Dr Scurr gave her a kidney
But through medical incompetence, she had been erroneously 'replumbed'
By MARTIN SCURR

When my wife Glynis was seven years old, she and her twin sister were diagnosed with rickets. But it wasn't the traditional type caused by a vitamin D deficiency - they had renal osteodystrophy, where a kidney malfunction affects the bones.

The investigations for this mysterious condition were carried out at what was then called the Hospital for Sick Children, Great Ormond Street, by the consultant responsible for their care, Sir Wilfred Sheldon, along with his senior registrar, Joe Luder, and the condition came to be known as the Sheldon-Luder syndrome.

The disease was subsequently found to be due to a genetic fault - my wife's father had probably also been affected. He'd died of septicaemia after a kidney transplant at the age of 46 in 1976; looking further back, at least one other case in earlier generations was identified.

The condition leads to the failure of kidney function in early middle age - my wife became increasingly ill and when we were both 42, she needed a kidney transplant.

I gave her one of mine.

It was an early example of a living kidney donation between people who weren't related, and was - still is - a serious procedure. I was determined not to behave like a patient and to take it all in my stride, but donating a kidney involves a lot of medical treatment.

I'd only ever been admitted to hospital once before, for knee surgery - and Glynis hadn't even noticed I had been in hospital for the night. Well, she probably had, but with her own constant hospital visits, it was as unremarkable for her as going to the dental hygienist is for you and me. This time for me things were a bit more complicated.

Once blood tests showed my kidney would be compatible, I had to have an X-ray and then an arteriogram, where they stick a walloping needle into your groin to check the blood flow in the arteries. You have to go in overnight and they shave off all your pubic hair, and it's all quite frightening even for a 42-year-old doctor.

I was determined not to be one of those neurotic doctor patients, so I just looked interested and talked through the procedures with the medical team.

On the day itself, we were admitted to what was then the Middlesex Hospital, in Bloomsbury, and were then parked in our single-sex wards, but we got dressed again and eloped to Harrods for lunch in a restaurant full of ladies in hats.

It was incredibly poignant because there was a serious chance Glynis might die and a teeny-weeny one that I might - and then we went back to hospital in a taxi and returned to our respective wards and took our clothes off again. The next day, they took me down to theatre first because they had to take my kidney out.

It's a much bigger operation for the donor because they have to take the kidney off the aorta - the main artery in the body - which means making a very deep hole, whereas for the recipient, although they are already critically ill, it is a simpler operation, where you just have to pop the kidney into their groin (this is to avoid much deeper surgery in the abdomen).

I remember waking up with a catheter in my bladder, which I dreaded, an intravenous line in my neck and a drip in my arm. They had moved me next to the nurses' station and I was just lying there connected up to tubes and things, Glynis was in another ward and we didn't have any contact with each other for a few days when somebody wheeled her in to see me.

But because I'd been fit before surgery, I recovered quickly and was able to go home on the fifth day. But six days after the operation Glynis lost my kidney due to a surgical complication. Through medical incompetence, she had been erroneously 'replumbed' and the vein from her kidney had developed a clot. Nobody admitted to the incompetence - that was the worst thing for her, being lied to. It took years to find out the truth.

Glynis was very ill afterwards. She was only just managing before the surgery, vomiting several times a day, and afterwards, she had to stay in hospital for two months. When she came home, we started home dialysis.

There are two versions of dialysis: haemodialysis, which is only performed in hospital, where your blood goes through an electric machine which does the work of the kidneys, filtering the waste.

Then there is chronic ambulant peritoneal dialysis, which you do at home. Here, you have a rubber tube inserted into an incision in your abdomen - it's just floating about your guts, kept in place with an Elastoplast.

There is also a big bag of fluid - two or three litres; it's a salty and sugary water brew that's passed into your abdomen, where it filters all the toxins in the blood; after an hour or two, you run out the fluid, like the bath, and it emerges looking like urine.

We did the dialysis two or three times every day for years - everywhere we went with our two sons, we had to take boxes of this fluid with us. But it caused problems because you have still got this tube inside and it gets infected. It is pretty horrible and she got hernias and then at the very end we had no choice but to do conventional dialysis.

By the time the transplant had gone disastrously wrong, we'd been told that both of our sons had the same condition. They grew up witnessing their mother struggling bravely with dialysis for 12 years before she was ultimately able to receive a second transplant in her mid-50s from a distant cousin (although Glynis and I were by then divorced we remain the closest of friends). Our sons knew that they, too, faced the prospect of renal failure and transplantation.

Three years ago, when he was 37, Ben, my oldest son, had to go urgently on to dialysis. His boyfriend, Nico, donated his kidney, but within days of the transplant, with Ben still in hospital, things started going wrong.

The kidney wasn't being rejected - but it turned out that Ben actually had a second kidney disease as well as the one he'd inherited from his mother. This second disease was affecting Nico's donated kidney. This gave us all quite a shock; it was a double blow.

Five months ago Ben was given a second kidney transplant - this time from a deceased donor - and has made stunning progress, with a kidney that works properly. At the same time he was also given a new pancreas, which cured his type 1 diabetes (he'd been diagnosed when he was seven).

So far, my younger son, Cosmo, who's 31, hasn't had problems with his kidneys.

It is all a worry, of course - and Cosmo now has a baby, who could also potentially carry the gene.

If there is anything positive to emerge from our personal difficulties, it is that, as a doctor, your understanding of patients is enormously improved by such experiences. And with that comes the compassion that informs your sense of vocation.