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.

September

It’s difficult to have a favourite month, as every month of the year has something special to offer. There’s always something unique to anticipate as each month looms on the horizon: from the festive month of December and all the hectic preparations for Christmas, to the peace, tranquility and perhaps even snow of January; from the anticipation of lighter evenings and warmer days during those spring months and the sunshine, heat and holidays of the summer.

September has always felt special to me though. I suppose it starts back from school days and the start of the school and academic year being September. September always feels like the time for a fresh start, new learning and new beginnings even more so than January when we’re supposed to reflect on the past year and think about new resolutions for the year ahead.

September was the month when Rob and I chose to get married and the month when I received my life saving transplant, so it’s a month that culminates in celebrations for our family. If I could have chosen which month to have received my transplant, it would have been September. For me, it truly is a month of new beginnings; a month to celebrate life and all it has to offer.

I always look forward to the weather in September, it’s usually cooler after the heat of summer, but still mild enough to be out and about enjoying the sunshine and fresh air. We’re usually lucky during this month as we often have plenty of sunshine and it’s calmer and quieter after the busyness of the school holidays.

We’ve just passed the Autumn Equinox, where the astrological year is marked by the sun crossing the earth’s equator from north to south. This marks the beginning of Autumn, nights drawing in and cooler weather. The meterological year marks the beginning of September as the start of autumn. Whichever way the start of autumn is defined, September is definitely the month where summer somehow manages to gradually ease into autumn. The garden defines this: we still have plenty of summer flowers – annuals still happily flowering along until the first frosts hit, but then many flowers have turned to fruits and berries, ripe for picking and preparing for winter.

For me, September is the month that leads us to crispy autumn walks, cosy warm evenings by the fire, enjoying the last of the warmer weather and then digging out those warmer winter jumpers and clothes. The beginning of a whole new season to embrace.

That Was August…

The days of August have flown so quickly. I think it’s because we’ve been so busy just enjoying life and the exceptional weather.

During the first few weeks we were away in the Lake District and then we had a week in south west Scotland. We experienced a wide range of weather from thirty degrees heat, to rain and stormy winds and then very pleasant sunny and cooler weather, which I enjoy most as I can breathe better and be more active.

We really tried to ‘pack it in’ and live those long summer days to the fullest, getting out and about from morning til dusk and visiting interesting places and catching up with family and friends.

Back home again for the rest of August, the weather continued to be good and we’ve also had a few welcome downpours after the last few hot and dry months. After turning yellow and dying back, the grass is bright green once again and the plants in the garden have sprung back to life. Many of the plants are enjoying a second flush of flowers.

Since we’ve been home, we’ve carried on enjoying the lovely summer days, catching up with friends, having days out. I’ve also managed to cram in lots of medical things, various scans and tests that have been pending that have all proved very positive and a full MOT at Transplant Clinic, which was a good one. So, all is as good as it can be on the health front.

For the first time in two years, I’d been allowed to go for three whole months without a clinic visit and I wasn’t fully convinced I’d stay the course, but I managed it and have to say that I’m feeling the best I have felt in a long time. Staying free from infection for a few months has definitely helped me get back on my feet properly at last. Summer has felt great because of this, as well as the beautiful weather we’ve had.  I’ve been pinching myself at times that I’ve actually got back to some normality and fitness after too many ups and downs with infections and hospital.

I’m optimistic now that this might continue. I’ve another three months off Transplant Clinic, although I’ve been referred back to UCLH now for the stomach fundoplication, as I’m fit and well again. This may throw a spanner in the works, but at least I’m in good enough health to go ahead with it and it needs to be done while I’m feeling fit. I’m already super-organised and have booked my flu jab, just trying to stay a step ahead of the game of battling infections.

One of the loveliest things we’ve been enjoying, has been spending time with family and in particular our little grandson Freddie. It’s been a sheer joy looking after him and taking him out and about on sunny days and just to enjoy watching him play out in the garden.

I treasure these special times with him. They are particularly poignant, as I enjoy every minute with him knowing it’s only thanks to my donor and their family that these moments have been made possible. A few years  ago, I wouldn’t have dared to dream of grandchildren.

Now we’re in September, it always was my favourite month, but with the anniversary of my transplant looming it will always be special and be held dear in my heart. It’s an emotional month for me and my family and we’re making lots of plans and looking forward to it.