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.

A Restful Easter

We enjoyed a lovely time this Easter, savouring some very special moments with family.

I wanted Easter to feel extra special after what’s felt like months of starting, stopping and restarting and stopping again with my health. Feeling so well again and having had a good clinic and now having some respite from the stomach operation, I just wanted to make the most of life and put some of the health related stresses behind us.

Also, casting my mind back to last Easter, when I was just out of hospital and still too unwell to enjoy it properly, it felt especially important to make the most of this Easter, live life to the full and try and become even more healthier.

With this in mind, we treated ourselves to a lovely few days on the North Norfolk coast, renting a house there and Sarah, Oli and baby Freddie joined us, which was lovely. North Norfolk is a favourite place of ours. We enjoy the walking, the spectacular beaches, countryside and wildlife, and in between all the exploring there’s plenty of good pubs and cafes to relax in too.

It’s a very dog friendly place, so we always bring Ted and Alfie with us and get lots of enjoyment from trying out different walks with them. Many of the pubs and cafes allow dogs inside too, so we can keep them with us when we want to eat out or go for coffee, which all adds to the fun.

We enjoyed some beautiful sunshine and explored both new places and favourite places we’d visited before. I especially enjoyed being out and about again with my camera in such stunning places and I found being by the seaside and in the countryside very uplifting and motivating with all fresh air and extra walking – all adding to improving my health hopefully.

One very special moment was seeing Freddie toddling on the beach for the first time at Brancaster in his first pair of tiny wellingtons. He loved it and both the dogs loved running free alongside him. We had a lovely Sunday lunch afterwards with the dogs sleeping at our feet and Freddie in his high chair tucking hungrily into his food. Simple pleasures, but very special ones.

Thornham village where we stayed had a good dog friendly pub – The Orange Tree – they even had a menu board especially for dogs. It also had a great deli with a dog friendly cafe, so on some days we found ourselves just enjoying some local coastal walks around the salt marshes and then either popping into the pub or deli for meals or drinks on our way round. Again, simple pleasures, but all very relaxing.

Following our lovely and relaxing Norfolk trip, it was time to enjoy Easter weekend. We weren’t so lucky with the weather, but that didn’t really matter so much, as we had a full house on Easter Sunday and Monday, with everyone stopping round. On Easter Saturday, we had a lovely day cooking and preparing food and we enjoyed a lovely family meal and Easter egg hunt on Easter Sunday and a very relaxing and lazy Easter Monday.

Now we’ve reached April, I’m really hoping for some WARM and sunny weather and getting back out in the garden again.

Here are a few Easter pics…