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Heart Transplant - A Member's Story

Before his transplant, Jason Corrigan was not aware that transplantation was a possibility for him. Here, Jason tells his story

"Diagnosed with Transposition of the Great Arteries, I was treated at Great Ormond Street Hospital as a baby. At 15 I had a tricuspid valve replacement. Growing up, my health caused some limitations but I never let it stop me living life to the full. It helped having a family who didn’t feel sorry for me and let me make my own choices and mistakes.

"In 2007 I started to have arrhythmia problems. It was decided that I should have an Implantable cardioverter-defibrillator ICD inserted. I happily continued working, but was frustrated as I kept having small health problems.

"By 2009, after a seven-week hospital stay, the reality became clear. I was in heart failure and needed a heart transplant. Fortunately, the Heart Hospital in London had started referring congenital heart patients for transplant assessment. I knew that if I wasn’t suitable, things were going to get much harder for me and my family.

"A few weeks later, my wife Karin and I drove to Freeman Hospital in Newcastle for the assessment. This involved the tests that most congenital heart patients would be familiar with, including an Echo and ECG, along with a lot of discussions with transplant coordinators, surgeons, doctors and the social worker. They all wanted to know a bit about me and my thoughts. I was told about the risks. Some were scary, like the lack of suitable organs, the risks of surgery and post-transplant life expectancy. Thereafter is the possibility of rejection, for which you have immune-suppression medication. However, this increases the risk of infections.

"It was made clear this was my last chance. I so much wanted to be accepted onto the transplant list, not just for me, but for my family and friends. To my relief and joy I was placed on the transplant list and given a list of things to do: see my GP, make sure all my vaccinations were up to date, see my dentist, pack a bag and have it ready for when I would get that all important telephone call.

"I never got that call. Later I ended up back in hospital at the Freeman and it was decided that I would remain there until my transplant. Waiting for that chance of a new lease of life, days then weeks went by. I was surprisingly upbeat most of the time. There were moments of feeling a bit down, but I never thought that I would not have my transplant or make a full recovery.

"I was told that there might be some false starts. On a Wednesday morning I had my first. My transplant coordinator came and told me that a possible heart had become available.

I phoned my family and friends. Karin made the 300-mile-dash by train to be with me. Just as she arrived, I was told that the heart was not suitable. Ten days later it happened all over again, this time at night.

"Finally in late June 2010 at 9pm, my transplant coordinator came to tell me that there might be a heart available. During the night I was woken up a couple of times to be given updates.

As before, I got prepared for possible surgery. Finally, at 5am, I was told it was happening! All the nurses on duty came to wish me luck. Suddenly it all became so real.

"Whilst in theatre, being prepared for surgery, there was a lull and we started talking about the World Cup. I was so relaxed, I surprised myself. Then the moment where I was lying down looking up to the ceiling. The mask went over my face and I found myself drifting into a deep sleep.

"I came round later that afternoon to the amazement of Karin and my father, who were at my bedside. All I remember is giving them the thumbs up. My surgeon came to see me. I think I shook his hand.

"A few days later I had to have further surgery due to unforeseen complications. This really put back my recovery. After getting back onto the ward, I had more unplanned surgery.

I was really frustrated. I’d had three operations in 30 days. Each time I made progress I seemed to have a setback. I would not want people to think this is normal - I think I was just unlucky.

"It was a long, hard road to getting back to my normal self but I got used to the new medications, regular biopsies, physiotherapy and, through the gym, became fitter. Now I have quarterly appointments, a yearly biopsy and six-weekly blood tests. Was it worth it? You bet it was! I’m alive and well and not a day goes by that I don’t think about my donor and their family.”

Heart Transplant - The Facts

(By Sarah Barker)

Heart transplants are generally performed on patients with end-stage heart failure or severe coronary artery disease after other treatments have failed to bring about improvements. However, not everyone with these conditions is suitable. There would usually need to be an absence of other serious health conditions, i.e. the patient will have a badly damaged heart but otherwise be in good health. Severe diabetes or kidney, lung or liver disease can increase the risks, as could a history of smoking or substance abuse, which increases the risk of lung disease. The availability of suitable donor hearts is a further limitation.

Before being placed on the transplant list, a patient must undergo an assessment of their emotional, psychological and physical health. Patients need to be willing and able to comply with lifestyle changes including exercise, physiotherapy and medication that will be necessary post-transplant. Jason’s cardiac nurse told him that he was considered suitable because he always attended his appointments, took his medication, did not smoke or drink excessively, had a positive attitude and a good support network. Two thirds of patients assessed by the Freeman are placed on the transplant list. The remainder are kept under review.

Before being admitted to hospital, Jason was able to get on with life as much as he could, given the limitations of his declining health. He acknowledges that the waiting can be difficult for patients and relatives: "I didn’t constantly wait by the phone, but when the transplant co-ordinator first called me to see how I was, I did think for a split second, this was it and was both relieved and disappointed it wasn’t.

I think it was hard for family waiting too, they were keen for it to happen and concerned about my current health.” Sadly, for some, the call never comes. At the Freeman, 70% of those on the transplant list go on to have a transplant. Some are lost whilst on the list; others become too unwell to withstand the surgery.

When a donor heart becomes available, it has to be checked to confirm that it is a suitable match. Blood type, body size and proteins in the donor and recipient must closely match to limit the possibility of rejection. Learning that a heart is not suitable can have a huge emotional effect on an already fragile patient and their family.

Following surgery, patients will undergo daily physiotherapy whilst they are rehabilitated, as well as a regular exercise programme. After he left hospital Jason was referred to a cardiac rehab group and still has to work on his fitness levels.

Patients are allowed to know basic details about the donor, including their age, first name and what they died from. The patient is allowed to send a letter to the donor’s family via their transplant co-ordinator.

After recovering from surgery, patients can carry out a wide range of activities including driving, holidays and physical activity. Some are able to return to work.

Patients need to take a range of medications, including immunosuppressants, for the rest of their life. Without these, the body would quickly recognise the new heart as "foreign” and attempt to reject it.

As these drugs suppress the immune system, the patient is more vulnerable to infection and other diseases. Jason has found that he is more susceptible to cold and flu infections, which hit him harder and take longer to recover from. He seeks advice more quickly and doctors prescribe antibiotics quicker. Jason takes medication four times a day - a total of 13 tablets. He checks his weight and temperature daily. Patients also need regular check-ups and blood tests.

Transplants for Congenital Heart Patients

Heart transplants in congenital heart patients remain rare and would not be part of the long-term treatment plan for the majority.

A transplant can be carried out on patients with any congenital heart condition, subject to the usual conditions.

The transplant would be carried out after the congenital condition has been corrected. Most congenital patients are in their mid 20s to 40s. Patients in this age range have reached adulthood, thanks to advances in treatment, but the repaired heart is starting to wear out.

The prospect of a transplant is emotional, given that the patient has had to come to terms with declining health and receiving the heart of another human being who has died. Fear, anxiety, depression and guilt are common emotional reactions. Congenital patients often feel an emotional bond with the heart that has seen them through to adulthood. Jason was asked if he would consent to his heart being used for research.

He agreed, on the condition that he was allowed to see it. He describes this as an "amazing experience” and a means of reaching "closure”.

Congenital patients have grown up with their team and can feel anxious about suddenly being cared for in a different hospital.

The Freeman is the only hospital carrying out transplants on adult congenital patients. This can cause financial pressures for families needing to travel long distances or rent accommodation.

Transplant surgery for congenital patients tends to be more intricate, due to the previous surgery. It can take longer to find a suitable donor due to there being more antibodies than in non-GUCH patients.

For congenital heart patients, the improvements in their quality of life post-surgery can be particularly exciting. Some are suddenly able to do things that they have never been able to do. The transplant therefore literally opens the door to a new life.

Asked what he would say to others for whom transplantation may be an option, Jason says: "I would say to them, grab the opportunity if it is offered to you. However, be aware of the risks and stress it can bring.”

Transplantation is naturally an emotional subject for those with heart conditions and their families. Support is available through the Somerville Foundation Helpline on 0800 854 759 or helpline@thesf.org. uk. Alternatively, you can contact Anne Crump, TSF Mental Health Support Worker on 0208 240 1165 or anne@thesf.org.uk or your Cardiac Nurse Specialist.

With thanks to Jason Corrigan, member of the Somerville Foundation and Lynne Holt, Clinical Transplant Co-ordinator, Freeman Hospital, Newcastle.

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