Five Years On…

I relax in the sunshine on a seat looking over the salt marshes and out to sea. I soak in the stunning view, breathe in and out deeply savouring the salty air deep down in my lungs. Those precious lungs – well precious heart and lungs, but lungs more precious and fragile than ever now as they take the brunt of every storm my body weathers since my transplant five years ago. I can feel the gentle sea breeze and mellow sunshine on my face. Birds are gathering for their journeys to warmer climates, but singing and twittering as though it’s high summer. Beautiful September sunshine on this the fifth anniversary of my heart and double lung transplant.

I remember a time I’d been here in Norfolk before, over seven years ago now. Rob pushing me in my wheelchair along board walks to the beach when I took the call to say I’d been placed on the active transplant list. We were on holiday at the time trying to make the most of life or what I might have had left of it. We were trying to make sense of a situation where I’d found myself terminally ill and been given only two years to live if I was lucky. At the same time, I’d been told I needed a heart and double lung transplant and that on average the wait for this operation takes two years. Three people a day were dying while waiting for a transplant. The odds felt against me and I had to prepare myself both ways – preparing to die and preparing to live. A confusing situation but survival was my only focus.

Then my mind flits to four years ago when we came back here again. It was the first anniversary of my heart and double lung transplant. No wheelchair this time, my health restored. I could walk for miles by now, my strength recovered. It had been an incredible first year since my transplant. Suddenly I could do all those things that everyone takes for granted – simple things like showering, pushing a trolley around the supermarket, driving and even ironing and housework. Just simple things and I would even pinch myself that it was all actually real; that ‘yes’ I had my health back and I’d been given the best gift of all – the gift of life.

Five years on now and I’m back in Norfolk with my family to celebrate this incredible milestone. As I sit here, I think of all the incredible things I’ve been able to achieve because of my donor. From first simple steps like taking a shower to living my dreams and being able to travel abroad again. I’ve visited New York and many cities across Europe, plus been on a mediterranean cruise and travelled on the Orient Express.

I’ve seen Sarah and Rose both graduate, establish their careers, then Sarah marrying and then, the best of all, the birth of my first grandchild, Freddie and now we have another grandchild on the way. This is so exciting for me, life always brings so much to look forward to. Every extra day I’ve been given is special in its own unique way.

Our plans this holiday have come unstuck a little as I’m actually struggling with parainfluenza virus and alongside that pseudonoma pneumonia that always flares and inflames my lungs when I’m fighting any illness or rejection of my new organs. With the support and help of my transplant team though, we’ve managed to make it here. I’m on intravenous anti-biotics and allowed to do them from home or where home happens to be this week, rather than being hospitalised – it’s not new to me, I’ve done this often now over these years post transplant.

Being immunosuppressed can bring its challenges. I’ve already been back to Papworth again since we’ve been here, because my longline stopped working, my veins are poor now, but they sorted things out and got me back on track to continue our special celebrations with family. I have the Transplant Team there to thank for getting me through thick and thin and being able to reach this five years post transplant mark.

While we’ve been here, we’ve already celebrated Rob’s 60th birthday and our 28th Wedding anniversary – more milestones to add to many. Every single one is special. Five years post heart and lung transplant feels a very special milestone in more ways than one. Only 50% of lung transplant patients survive five years and beyond – it’s always been my long term goal to achieve this and it feels a huge achievement given the struggles with my lungs over the last few years.

I stare out to the sea and know that I’ve been fortunate, not only to have received my transplant in the first place, but to be given all this extra time with my family and a second chance to experience so many new opportunities and challenges that life brings. The horizon spreads wide in front of me and it fills me with hope for so much more to come. Well there’s a new baby to look forward to next spring, that’s going to be amazing for a start…

There isn’t a day goes by where I don’t thank my donor and their family for my gift of life.