Union leader Mark Serwotka contracted virus while walking dog - and needed pioneering non-beating heart transplant at Papworth Hospital
The technique could help save many more lives
A father-of-two has told how his life was saved by Papworth Hospital using a pioneering technique that could help ease the acute shortage of hearts available for transplantation.
Mark Serwotka, the leader of the Public and Commercial Services Union, celebrated the first anniversary of his heart transplant on Sunday December 3. 2017, – 50 years to the day from the world’s first.
He needed the new organ after his was irreparably damaged by a virus that he contracted while walking his dog.
For two years he had a battery-powered heart pump that he plugged into the mains when at home, or the cigarette lighter while in his car. But when the pump developed a clot, he required a new heart to save his life – and endured four false alarms before one was finally found that was suitable.
He was given a heart from a circulatory determined dead donor (DCD) – a person confirmed dead because their heart had stopped beating. Until recently, surgeons have only been able to use hearts from donors diagnosed as brain dead (DBD). But the results of a study coinciding with the 50th anniversary of the world’s first successful heart transplant have shown the groundbreaking work by Papworth surgeons in using DCD hearts leads to outcomes at least as good as those transplanted using traditional techniques.
With the number of hearts available from DBD donors declining, due to improved medical care and road safety, and the waiting list for hearts growing, the new technique will be a lifesaver for many others like Mark.
He told the Cambridge Independent: “In 2010, I was healthy and never had any heart issues. I got struck down with a virus I contracted while walking my dog.
“The dog ran off in the woods and it was like he’d rolled in something. The smell was so foul my guess was it was probably a dead fox or something. I washed him down and it’s probably from that that I contracted the virus that set off the reaction.
“I had a very swollen face and legs. A GP thought it was an allergic reaction. But a couple of weeks later I was rushed into hospital with an extremely fast beating heart – 220 beats per minute.”
It was Mark’s 47th birthday.
“We were having a birthday tea and I started feeling dreadful. You could literally see the pounding coming through my T-shirt,” he recalled.
His local hospital thought he was having a heart attack but, on referral to a London hospital, it emerged that the reaction to the virus seen externally was also happening internally.
“I’d had a massive swelling in my heart. When it went down, my heart was irreparably damaged,” he said.
After six weeks in hospital, he was released with an ICD – an implantable cardioverter defibrillator, similar to the one with which footballer Fabrice Muamba was fitted after collapsing on the pitch.
“It’s a pacemaker that also has the ability to deliver an electric shock if the heart goes into a false rhythm,” explained Mark.
After a couple of years, however, Mark’s health deteriorated quite rapidly and in 2013 he went into Papworth Hospital for a transplant assessment.
“The result was that I was in fairly clear need of a transplant but that I was considered to be too ill for it to be viable because I had enormous blood pressure internally – pulmonary hypertension,” he said.
“The diagnosis was to reduce the hypertension to get me to the point where I could have a transplant.
“In the next six months, I deteriorated again rapidly. I was admitted to Papworth in April 2014 and during my stay I required an emergency operation to have a LVAD – a left ventricular assist device. It’s a heart pump for people in danger of death who can’t have a transplant.
“They stitch into your heart a heart pump. It has cables that come out of your stomach to an external power source which you have to have on 24 hours a day. That replaces the beating heart function – your blood is pumped in an electrical device.”
“You carry it on your body and you have batteries, or you can plug it in the mains. If you’re in the car, you plug it into the cigarette lighter.
“They are remarkable and they keep you alive. You don’t have a pulse because you don’t have a pumping heart. You have a mechanical pump.
“I regularly plugged into the cigarette lighter in the car and I would plug into the mains at bedtime. You have batteries that you keep charged for when you’re out and about. Obviously if your power supply fails, the pump stops and it can mean death.”
The pumps can work for a number of years, but come with a risk of stroke or infection.
“It’s a big operation but it keeps you alive,” said Mark. “I went back to work full-time with it.”
“In August 2016, my pump started setting off an alarm and acted strangely. I went in urgently to Papworth and they found the pump had developed a clot.
“It was a life-threatening situation. I was put on the urgent transplant list for a suitable heart. I was on a drip with blood thinners.
“When you’re in hospital in for months - and I’d lost three stone in weight – you begin to think a variety of thoughts including ‘Is time running out?’
“The staff at the hospital are amazing. It would be very easy to sink into pits of despair. But the people are brilliant at what they do. They are very open and honest. They share with you if you want to ask. I don’t think there’s any soft-soaping. They deal with it really well.”
After four false alarms – on one occasion Mark was ready in his gown for the operation – finally a suitable heart was found.
“When they tell you, it’s a big emotional rollercoaster,” said Mark. “Your family all pile down the motorway.
“You get prepped. All the while this is going on, you have the unfortunate donor in another part of the country and they are doing tests to check the heart is suitable.”
Mark underwent a lengthy operation, in which his pump – complete with visible clot – was removed and his new heart stitched in. The organ had stopped beating in his donor but was revitalised by doctors and kept beating in an organ care system – an operation first performed by Papworth in 2015. It has now completed 37 DCD transplants.
With the results of the study confirming the technique’s successful long-term outcomes, it is hoped the method could ultimately double the number of heart transplants carried out at Papworth and be used around the world.
“Within 19 days of the operation I was back home. I was back in full-time work within three months. I’m feeling better than I’ve felt in 20 years,” said Mark, who is general secretary of the largest civil service union and has addressed a rally of 250,000 in support of the NHS.
“If I hadn’t had a DCD heart, who knows if it ever would have happened for me? At the time, I think Papworth were the only ones doing the DCD programme.
“It’s amazing. I always felt the whole process is much harder for the family.”
Mark’s wife, Ruth, daughter Imogen, 23, and son Rhys, 20, waited for four days for Mark to come around from the operation.
“Once you’ve got your senses, and you know you’ve survived the operation, you think ‘This is what I’ve been waiting for’. You just want to make the most of it. So you do the physio they want you to do, get stuck in and leave as soon as physically possible.
“You’ve got a chance here that you’re lucky to have,” he said.
“It confirmed to me how marvellous the NHS is and how the staff deserved to be treated much better than they are by politicians.
“It also confirmed to me that the whole NHS is a team. We all talk about the surgeons and the nurses. But there’s physios, radiographers, cleaners, people who feed you, people who bath you… it is marvellous. Papworth is particularly fantastic I think.
“It also reaffirmed for me the importance of organ donation. There are people dying who can live – we have the skills but sometimes we don’t have the organs. It’s committed me to do a lot of campaigning for changing the law so that there’s presumed consent and people can opt out rather than opt in.
“On a personal level, it makes you decide you’ve got to seize the day. You don’t know what’s around the corner so you make the most of what you’ve got. You often put things off when you got about your life, when you’re busy. When you lying there, it makes you think if you get through it you should make the most of the time you have.”
Mark, who lives in South London, added: “I’ve had an incredibly good year. I’m walking 250km a month. One of the things that makes you have a different outlook is I’m actually only here because of the generosity of the donor and their family.
“It makes you think you have a responsibility not just to yourself and your family but to the people who gave you the gift and that is too look after it. So I walk places I would have gone in the car. I get exercise every day.
“But for every fantastic story, there’s been grief for the donor and their family.
“It’s a year on for me and we’re celebrating an anniversary but that’s an anniversary of a loved one’s death for someone else. I will always be eternally grateful.”