Practice A Patient’s Journey

Heart transplant

BMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c4918 (Published 17 December 2010) Cite this as: BMJ 2010;341:c4918
  1. Andrew Maiklem, patient1,
  2. Ed Nicol, consultant cardiologist and general physician2
  1. 1Kingston-Upon-Thames, UK
  2. 2Departments of Cardiology and Radiology, Royal Brompton Hospital, Sydney Street, London, UK
  1. Correspondence to: A Maiklem amaiklem{at}caci.co.uk E Nicol cyprusdoc{at}doctors.org.uk
  • Accepted 20 July 2010

The patient’s heart failure became apparent during his friend’s stag weekend. After a minor heart attack he had a heart transplant

I was 28 years old and led a somewhat unexciting, single life in London. I had been feeling breathless for a couple of weeks leading up to Ed’s stag weekend in September 2002. As a non-smoker I was not too worried, and my doctor reassured me there was nothing wrong. At the stag weekend I braved the karting activities, but as the day wore on I laboured with my breathing, and by the evening I struggled to climb a single flight of stairs. Despite his inebriated state, Ed was worried. It certainly helped that he and several other attendees at the weekend were doctors.

The next morning, surrounded by doctors with hangovers, I had a chest radiograph. A few days later, on Friday 13, I attended a clinic at the Royal Brompton Hospital. After echocardiography had clearly shown something was amiss, I was admitted with heart failure. On reflection it is strange that on being told I had heart failure I didn’t really react. I was more thankful that the doctors had found a cause for my breathlessness and that it wasn’t cancer. I was initially told I would be out of hospital for the wedding, but I then had a minor heart attack. I remember this happening although the events immediately after it are a little blurred. I remember not being able breathe very well; it almost felt like I was suffocating. I reached for the nurse’s bell, managed to hit it, and that was the last thing I remember.

I woke up six days later in the intensive care unit. I had two large tubes coming out of my chest, feeding into the left ventricular assist device. It didn’t faze me at all; I was more confused about the fact that to my mind yesterday had been Friday and today was now Thursday. Although my blood was now being pumped by a huge machine because my heart was no longer strong enough this didn’t particularly trouble me, but a few things did: first was the continuous positive airway pressure machine blasting freezing cold air down my throat. This would have been uncomfortable enough but was made infinitely worse by the tube that I had going up my nose to feed me, which was breaking the mask seal, resulting in freezing cold air being directed straight into my right eye. I tried my hardest to explain this to the nurses, but my oral skills were somewhat lacking.

I remember trying to communicate with my parents in those first few days. My mind knew what I wanted to say, but when I tried to speak the words just wouldn’t come. I tried to write things down, but spelling and letters also failed me. I just couldn’t remember how to communicate. This caused huge frustration, and tired me out very quickly. During this time I never contemplated further than the next hour; the future didn’t seem to matter, nor even cross my mind.

Within a week I was strong enough to be moved on to a much smaller and mobile left ventricular assist device, and I was moved to Harefield Hospital, where I was told that the device would allow my heart to rest and potentially get better. It was described to me as a bridge to recovery. There was never any suggestion that things would go any other way. But after three weeks a consultant came to see me to tell me that I needed a heart transplant. My first reaction was anger, and then came frustration. I decided the doctors were giving up on saving my heart and opting just to replace it. I felt three weeks wasn’t long enough for my heart to have recovered, and that they should give it another few weeks. However, with help and support from my friends and family I soon realised that this course of action had not been taken lightly.

So having taken the weekend to contemplate that I could not live on the machine forever I decided that a transplant was my best option and gave my consent. Unbelievably, the next day a very excited transplant coordinator came racing into my room telling me they had a heart for me. Within five days I was in the gym and feeling like a new man. After my transplant I realised how easy everyday tasks now were, and it dawned on me that I had made precisely the right decision.

Along with a new heart comes a new sense of optimism for life, a second chance, and a whole new regimen for life, in particular a lot more pills to take. This small change to my life was probably the most difficult to incorporate, which sounds ridiculous, as I had just had one of my major organs replaced. The most challenging time was the first six months because the drugs and their dosage changed on a weekly basis. But around the first year mark the drug regimen settled down and has remained constant ever since. As with any new routine, it takes a few months to get used to, but then it is as subliminal as cleaning your teeth.

The first three months after the transplant were a hectic learning curve. During this period of weekly hospital reviews, remembering what pills to take and when, coupled with a ban on mixing with the outside world, I had a lot of time for inward reflection. I realised how things could have turned out very differently: if my friend hadn’t made it possible for me to attend the initial clinic; if my friends and family hadn’t been there to support me in my decision to opt for the transplant; if medical support and ability hadn’t been there to keep me alive long enough for the operation; and, of course, if the donor heart hadn’t been available. I have a lot to be thankful for, and with this comes a sense of responsibility, a responsibility to lead a long and healthy life. I felt indebted to these people. It was during this period that I realised that going for a few tests to make sure I’m in tip top condition and remembering to take pills twice a day was not a big ask in return.

After my three months’ enforced isolation, I started to reintroduce myself to normal life. I thought I could just pick up where I left off. My consultant had told me that it would take me a year to return to being fully fit. Initially I did not believe him. But four months in I tried to run for a bus, and at the point where I started running I fell flat on my face. My legs gave way, my heart was pounding, and I lay there thinking maybe this would take a year. But I was back at full time work within five months, and the more I got back into my usual routine, the less I felt like anything had happened.

I am now married to a surgeon and live a normal life. The only time I remember that I have had a transplant is when I need to go for my six monthly check up. I believe this is because my friends and family treat me no differently from how they always have. They certainly do not let me use my transplant as an excuse to avoid the rigours of life.

A doctor’s perspective

In 2002, Andy was, and still is, one of my closest friends. As doctors we are all faced with requests from friends and family for advice or counsel from time to time. I try to adopt a professional but generic response in an attempt to keep my personal and professional relationships distinct.

Despite the inebriated state of the doctors gathered at my stag party our professional duty prevailed. Andy’s decline was rapid, and he was soon in a precarious state with an uncertain outlook. Although his left ventricle assist device was a technical success, there was concern that he could have experienced an operative cerebrovascular accident.

It is not the technical aspects of Andy’s case that have left a mark on me professionally, but my personal, emotional journey. I will never forget talking to Andy’s family, nor trying to explain the situation to our closest friends. It is hard breaking difficult news to relatives you do not know, but doing this with friends and a family whom you know very well is something else entirely.

I tried to be sensitive but realistic, although my wife recalls I went into “doctor mode” while Andy remained ventilated. I think this was my way of coping. There were many tears, yet also a recognition of what Andy brought to all our lives, so that with the anguish there was the hope that not only would he wake up, but still be the same Andy we all knew and loved.

I look back on this episode regularly and reflect how it has influenced me. I value my own life more and hope that when I am involved professionally with patients’ loved ones I am more aware and understanding. I do not offer Andy counsel, he knows where I am and that I am always happy to assist and answer questions. We are friends, first and foremost, and long may it stay that way.

Ed Nicol

Notes

Cite this as: BMJ 2010;341:c4918

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

  • Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, no other relationships or activities that could appear to have influenced the submitted work.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

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