A few years ago, I attended a wedding with my husband, Peter. It was a family wedding, of a sort. I don’t know if there is a term that describes the relationship of the bride, Susie, to me - but we are related. One night in February 2004, Susie and I received life-saving transplant operations in next-door operating theatres. She received the heart and I received a lung from the same donor. So we all had much to celebrate at that wedding

My lung problems began in 1987, when I was in my early twenties. I’d always been fit and healthy, so it was a shock when I suffered three lung collapses in six weeks, soon after a trekking holiday high in the Indian Himalaya. Having just started my first job in London, I ended up in hospital there. Nothing specific was diagnosed, but I underwent some fairly brutal surgery – a partial pleurectomy. Essentially, I was patched up and sent on my way.

Five years later, after some more lung problems, I was told I had the chronic disease lymphangioleiomyomatosis (now known as LAM). At that time, very little known was known about the disease. With no internet, the only sources of information were textbooks with one-line entries along the lines of “...a very rare lung disease which affects women and is usually fatal within 10 years.” Oestrogen is thought to play a part in LAM, so I was advised not to have children. I was told that my prognosis was uncertain, but that there was no treatment and no cure. Certainly, a lung transplant was not considered an option at that time.

It was a devastating diagnosis. I was 27 years old, had recently moved to Edinburgh to a new job which I loved and which involved a lot of trans-Atlantic travel, and had just started seeing a boyfriend, Peter, who was later to become my husband.

Until then, my future had been a place of opportunity, ambition and optimism. Now, it was a dark place where uncertainty and danger lurked. And yet I had been told to go ahead and live my life as normal.

In practice, however, the disease progressed through slow attrition. I grew increasingly breathless, and required more surgery after further lung collapses. It was in 1995, before another operation, that the possibility of a transplant was first raised with me. This was fantastic news; finally, I was given some hope that my future might hold something other than the ultimately terminal march of the disease.

In the meantime, though, I was being forced to give up my favourite activities one by one. And it was not only me who was affected; my world was shrinking, but so was that of my family because we couldn’t do anything together. By summer 2003, I was on oxygen 24 hours a day; eating and sleeping were difficult; and showering and dressing in the morning took hours. I’m naturally an energetic and sociable person, but was unable to be either.

I was finally put on the transplant list in July 2003. By then, my physical symptoms were at least matched by the psychological impact of my situation; I was deteriorating rapidly, and was terrified that my call would not come in time.

However, I was lucky. In February 2004, I received a new left lung. In general, the operation went well and thanks to my donor, her family, the team at the Freeman Hospital and the support of my family and friends, my life since then has been absolutely transformed. Leaving hospital was extremely emotional – I felt like a new woman. Three weeks after the operation, I was able to walk outside for an hour, and was weeping with gratitude and amazement.

Of course, there have been setbacks, but the best piece of advice I received was that I should expect a rollercoaster ride post-transplant, particularly in the first year. Even if the medical team cannot predict the exact nature of such setbacks for each individual, being warned in advance to expect problems certainly helped me deal with mine when they inevitably occurred. My own blips included two episodes of acute rejection in the first months and, more recently, a struggle to eradicate a bout of the water-borne disease cryptosporidium. Like most transplant patients, my bones, liver, kidneys and skin all now reflect the toxic side-effects of the immunosuppressant medication.

But the benefits have far outweighed these problems. My quality of life is excellent. It is wonderful to live a normal life again: going out for supper with friends, working, walking to the cinema, going on holiday, playing with my young nephews. I even appreciate being able to do my own supermarket shopping!

I am able to indulge my love of sport again too; since my transplant I’ve been kayaking, skiing and golfing, and have even learnt to rollerblade. Earlier this year, my husband and I travelled to New Zealand, where we completed the arduous one-day trek, the Tongariro Crossing. In summary, I am a participant again, rather than a frustrated spectator. It is a complete miracle.

Ironically, I think my illness and transplant have allowed me to achieve a better life/work balance than I otherwise might have had. Having spent my career in the financial sector, I now mix freelance consulting and writing with work for charities associated with organ donation and my underlying disease, giving talks and writing articles. Currently, I also chair the research and support group LAM Action. Together with exercising, and spending time with friends and family, life is busy!

Soon I will celebrate the seventh anniversary of my transplant. But while it will be another happy milestone for Susie and me, it will also be a sad anniversary for my donor family. I wrote to them soon after my transplant; it was the most difficult letter I’ve ever had to write, but also the most important. I can’t thank them enough, but hope that my letter – and those from Susie and other people who benefited from their brave decision – helped them in their loss.

Gill Hollis

Autumn 2010