"It is truly a selfless act"

About: Derriford Hospital / Respiratory medicine Harefield Hospital / Respiratory medicine

(as the patient),

I sat in the consultant’s room listening to him say, “there is nothing more we can do for you than to try and get you on the lung transplant list. At most you have 12 months to live, possibly a bit longer.” Was he talking about me?

I was diagnosed with a genetic disease known as Alpha 1. My symptoms did not start until my mid 30s, when pleurisy for me, became as ‘normal’ as the common cold. Each time, my lungs were exposed to infection, my liver failed to produce the enzyme that protects your organs when under attack, and the damage to my lungs was not survivable.

Up until then, I managed quite a ‘normal’ life, I was married and had my son and was working full time. It’s a strange thing to say but your body seems to get used to struggling for breath and it becomes your norm, you barely notice it.

But within 12 months, my life became far from normal. I found myself saying to people “I can’t walk and talk at the same time, you keep talking, and I’ll listen. ” I couldn’t walk at the normal pace of other people, I’d answer the phone in the office and people would ask if I’d had to run to answer it, when I’d been sitting there for hours. Normal, everyday things became such a struggle. But the very worst - were the attacks - when you can’t breathe at all. I don’t know the words to describe the fear, and panic of experiencing such a thing. I guess the closest I can compare it to must be like drowning. Then comes the fear, when are you going to get the next one? And the next one will come. Like all disease, it’s cruel.

It took 12 months of physical and psychological tests to make it onto the lung transplant list, and I’d made it! Then you wait, knowing that someone will die, for you to get ‘the’ call. The gift of life is given to you, by a total stranger during one of the most emotional times for their family and loved ones. It is truly a selfless act.

I got ‘the’ call in the early hours of 26 December. I was rushed, almost 200 miles to Harefield Hospital, London. By this time I had less than 10% lung capacity and was on oxygen 24/7. Was I scared? Yes, I was, but it didn’t seem, to me, as scary as the relentless fight for breath. I’d been given this chance of life and I wasn’t going to waste it. My donor, my surgeon Andre, and everyone at Harefield Hospital made it possible. The work carried out by this hospital is truly awe inspiring.

When I was taken off life support the first breath I took was incredible, no struggle, no pain – I could breathe. I think all lung transplant patients remember their ‘first breath’. I was discharged after only 10 days! Everything was going well but I developed clots on the lungs and was back in Harefield Hospital in February. With the hospital’s expertise and care I recovered from this and have now survived for 2 years and 8 months. According to the stats, I have a 67 percent chance to make it to 3 years and a 51 percent chance to make it to 5 years. Time I would not have had.

After 12 months or so, I wrote to my donor’s family. What a difficult letter to write, and what a difficult letter it must have been to read. But they wrote back to me. I am extremely privileged, as I was told this is a rare occurrence. I now know my donor’s name, Jane. I can’t explain how important that was to me.

I have survived for over 2 years now and I was able to meet my first grandchild, what an incredible experience and achievement given to me by Jane and her family through the skills and care of Harefield Hospital, London.

Jane and I are doing just fine.

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Response from Claire Jukes, Patient Experience Support, Plymouth Hospitals NHS Trust

picture of Claire Jukes

Dear Kazz123

I was truly humbled to read the wonderful story you have written, thank you so much for taking the time to share this with us. I can only begin to imagine what a difficult time it was for you and your family going through the process of making it on to the transplant list and then receiving the wonderful news they had found a match for you. The time you took to then write to Jane’s family would I am sure have helped them to come to terms with their loss.

I will ensure a copy of your story is shared with the respiratory team, who I know they will be very grateful to read your story.

During our Trust Board meeting and Patient Experience Committee we listen to a Patient Story and yours would be a wonderful story for us to listen to and hear more about your transplant journey. If this is something you would like to do, I’d be very grateful if you could contact me at claire.jukes@nhs.net or telephone 01752 433074.

With best wishes

Claire Jukes

Patient Experience Support Manager

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Update posted by Kazz123 (the patient)

Thank you so much for your response Claire. Yes, more than happy to. I'll telephone you this coming Monday.