Richard Lane's Islet-cell Transplant Story
Click here to listen to Richard speaking to Gordon Astley on BBC Southern Counties Radio.
“I have been extremely fortunate to have had break-though treatment, which makes me incredibly happy, as it does my wife, children and all those who care about me. My thanks go to all of them. My diabetes story started when I was 32. I had odd symptoms and it proved hard to diagnose. I was really quite ill and thought I had cancer because of an extraordinary loss of weight and other relevant symptoms. I actually said, ‘hooray', when I was diagnosed. It was a relief, but little did I know what was in store for me!
In hospital I practiced injecting with oranges and they even induced a hypo in me in order to show what could happen. Then they sent me home with some insulin, a syringe and left me to it. From the beginning, I was a very brittle diabetic, which means I had frightening blood sugar swings, and over time I had less and less warnings of hypos.
You can't ignore diabetes, at least not my type of diabetes. I was a fanatical sportsman at the time, but had to give up participating as a player at 40 as I would often get sudden hypos and I felt I was letting the teams down, but also it was taking several days to get over each game. As for work, I was an accountant and worked hard. I loved my work and was a partner in BDO Stoy Hayward, but I was forced to take early retirement when aged 60 due to my health and the worry it was causing others around me: in particular the instances when I would suddenly go into a coma.
From the outset I was cared for by the diabetes unit at Bromley Hospital , but after a few years they referred me on to Kings College Hospital as the doctors at Bromley were concerned that they could not help me as much as they needed to. There I met Professor Peter Watkins – the first of my miracle workers -- a personal hero of mine, a real gentleman and now a very good friend. He made a difference, but I still had comas and my health was generally unpredictable, and at times pretty bad.
In 1997, while driving to the hospital for an appointment, I went into a coma while driving and woke up in hospital – I'd crashed the car and finished up in a cemetery, of all places. No one else was hurt, but I'd crushed two vertebrae. My back was literally broken. After several months in and out of Bromley Hospital I was referred to the second of my miracle workers, a famous spinal injury surgeon called Tim Morley who carried out an eight-and-a-half-hour operation on my spine. Now I'm 95% OK, but that broken back was a direct result of my diabetes.
Professor Watkins finally retired from Kings in 1999, but before he left he introduced me to Professor Stephanie Amiel. She is my third and final miracle worker. An amazing lady – she has skill, knowledge, vision and is a human dynamo. She soon talked to me about islet cell transplants. If I had agreed to this I would have been the first person in the UK and one of the first in the world to have this treatment. However I was really ill at the time and wasn't ready to be such a guinea pig. Instead I went on to the pump. These are expensive but effective, and can make a big difference for some people and it did for me, for three years, but by 2004, I was very ill again – having up to six major hypos a week. It was very hard for everyone.
In 2004, after retiring, I was asked to reconsider islet cell transplants again. At this point there had only been seven people in Canada and two people in England who had undergone the operation. After two months of extensive tests, risk assessment and education, which involved my wife as well as myself, I was put on the waiting list for my first transplant. The support that I received from the team of 12 surgeons, doctors and specialist nurses, including a psychiatrist, was fantastic.
I wasn't keen on the idea of a psychiatrist, but she was a wonderful lady who helped me enormously. The main issue was the stress of finding donor pancreases. I was also warned about the risks, and had to be assessed to see if I was ‘mentally robust'.
Islet cells for transplant die very quickly so extracting them has to happen fast. As many as 15,000 beta cells are required per human, per kilo of weight, and I'm the tallest and heaviest of the patients operated on to date. I needed 1.25 million islet cells. Each operation involved the insertion of a probe with a canula on one end which is pushed in between the ribs, through the liver and into the portal vein. Beta cells in plasma are dripped in and are distributed into the liver. It can take up to three transplants as many of the islet cells die during the process.
Following the first transplant there were many tests particularly over the first four days. I was still on the pump, but we turned down the insulin dose to about two-thirds of the previous does and I was euphoric. However I have to take two types of anti-rejection drugs for the rest of my life. With other drugs that I have to take I'm on a total of 19 pills a day, but I was on more.
The next two operations took place over the following four months. After the second one the insulin dose was once more turned down. After the third, I took off the pump and handed it back. It was an absolute joy, a celebration.
I was the first person in the UK to completely come off insulin. This situation continued for about a year, but I have now had to go back on to insulin. I'd contracted a viral infection from which some antibodies developed which are damaging my lovely new beta cells, and now I have to supplement my natural insulin via the pump and count carbs again. Before the operations I'd listed my aims for having the operation in priority order, which were:
- To eliminate hypos
- To stabilize the diabetes-related complications I was experiencing
- Coming off insulin
The fact is that my first two aims have been achieved, so to not have fully continued to achieve the third aim is a small price to pay. I've not had a major hypo since the day before my first operation. I'm lined up to have another transplant once the problem in my immune system has been sorted out, which may correct this.
The biggest threat involved in the operation is actually the anti-rejection drug therapy that comes afterwards, which increases slightly the risks of skin cancer and lymphoma. There are other exciting research projects looking into using stem cells grown from an individual's own DNA, which means the patient will not need the anti-rejection drugs. So islet cell transplants are not a cure, as you have to take different drugs, but it's still great. The other big problem is the lack of donor pancreases. No matter who you are, please consider carrying a donor card with you as your organs – not just your pancreas -- can save lives. Even diabetics can be organ donors!
Diabetes UK paid for all the research that has lead to this. Money put into research really does work! I'm proud and happy to share my experience in order to help raise both awareness and money. From April of this year, the NHS is funding islet cell transplants in six UK hospitals as it now sees this as treatment and not research, which is fantastic news for those who have serious diabetes.”