Professor Sir Roy Calne, the pioneering transplant surgeon, told Ian that he had just three weeks to live if he didn't have an emergency liver transplant. It was 1986 and Ian was just 36 years old. Now nearly 40 years and a second transplant later, Ian wants everyone to know what a successful procedure it can be. Thank you for sharing your story, Ian
In 1985 I started feeling lethargic and was being sick after every meal. I’d been to my doctor several times and to the gastroenterologist a couple of times. By 1986 I was feeling really ill – I was jaundiced, had ascites and had been drained a couple of times. I took an overnight bag to my next hospital appointment in March and told my consultant: “I’m not going anywhere until you sort this out”.
I was admitted and sent to various places to have tests done, but they couldn’t work out what was wrong. At one stage they thought it was liver cancer which knocked me for six but then changed their minds. They eventually came up with Budd Chiari and explained as much as they knew, but didn’t know what had caused it. I was asked if I’d been to India and drunk lots of tea. Otherwise, they weren’t doing a great deal and had more or less given up on me.
Ambulance to Addenbrookes Hospital
By July one of the ward sisters said: “Ian, you need to get out of here and get a second opinion” so I discharged myself. As soon as I did my GP said: “Thank God you’re out, I couldn’t touch you while you were in there”. He arranged an ambulance to Addenbrookes Hospital for me the next day and within a couple of hours Professor Roy Calne had examined me. He told me I needed a transplant quickly because I only had about three weeks to live. I was only 36 years old.
I was sent to Kings to be assessed and they did all sorts of tests, putting hoses in every hole in my body and if there wasn’t a hole they made one. I was then sent back to Addenbrookes. I was a bit out of it by this point because of the toxins so I’m not sure how long it took before a new liver was found, but not very long, I think. I had the procedure at 6am and it took 13 hours.
They didn’t explain to me or my wife what was going to happen because they didn’t in those days. After the transplant my wife nearly passed out when she saw me in intensive care with hoses down my throat. The recovery was tough, within a few days they got me up and walking around with all this fluid running out of my scar. After a week or two I was shipped to King’s to recover and was in hospital for a total of seven weeks.
Some liver transplant recipients find it difficult to think they have another liver inside them, but I didn’t have any of that
My recovery was slow but sure and after six months I played a round of golf and raised £1,000 which I presented to Sir Roy Calne at Addenbrookes. It took about a year to get back to normal. Some transplant recipients find it difficult to think they have another liver inside them, but I didn’t have any of that.
I worked for Coca Cola as an area manager at the time and they were very good indeed – they sent my wife flowers every week. They weren’t that keen to take me back after the transplant as it was all fairly new then, but that was OK as we had our own business running parallel to it and they gave me the company car when I finished there.
Until I explained that it was Budd Chiari syndrome everybody thought I had alcohol related liver disease. It didn’t upset me because I’m pretty thick skinned. I found that people who knew me and knew it wasn’t alcohol would sometimes cross the street when they saw me because they didn’t know what to say.
One day, five years post-transplant, I had a phone call from Kings asking if I would be interested in taking part in an experiment which had been tried in America. I said I would as long as I was the first in the country to which they agreed.
The procedure was that I would stop all my immunosuppression drugs from day one of being in the hospital and monitor my bloods daily to check the ALT levels. If they reached 100, they would put me back on the drugs and I would be ok. Every day the levels went higher and higher until after about five days they reached 95, the following day they were 95 and the next day 92 and every day after they came down and eventually they stabilized at 42 which is where it stayed for the next 18 years without any anti-rejection drugs whatsoever. Unfortunately several other people who tried it didn’t survive and to this day I think I am the only patient who survived this experiment.
Life of transplanted liver
They reckoned then that the life of a transplanted liver was about 15 years which is more than I would have had otherwise, but it lasted 23 years. I then started feeling ill again, with similar symptoms to before. Again, I was assessed for a transplant, had several meetings with the consultants at Kings and was eventually put on the list. It was several months before I had the first phone call and an ambulance blue-lighted me to Kings and prepared me for the transplant. At 4am the surgeon came in and I thought “here we go” but he said: “I’m sorry the liver’s not good enough for you”. I was obviously quite disappointed and got the next call a month later. It went ahead that time. In between all of it there were various operations. I had to have two biliary reconstructions, my gallbladder was removed and I still get cholangitis attacks.
There was a lot more information before and after the second transplant, I knew what to expect anyway and was out in seven days. What I really would have appreciated is to speak to someone who had had a transplant to allay any fears. I’ve offered this service to my local hospital, but they’ve never taken me up on it.
I’ve been transplanted for 38 years in total. I’m a real success story. I don’t know how many other people out there who have been as long or even longer. I just wanted to let people know that it is a successful operation.
