Six Years On

September 2013

6.30am The phone rings and I have that feeling that this it, the transplant. I shakily answer and the transplant coordinator confirms my thoughts.

I remain calm, gather my things together and am ready for the ambulance. Rob is in panic, frantically trying to get hold of our girls to no avail.

7.30am The ambulance arrives. I take a call from Rose down in Bournemouth as I clamber in, tell her I love her. I don’t even know if I will ever see her again, knowing you might be having your heart and lungs removed that day is a terrifying, daunting and most frightening thing.

I focus on the task in hand, say goodbye to Rob as he puts bags and cases in his car to follow us. I take a deep breath and take what could be my last long lingering look at my home. Will I be coming back today? Will I ever come back?

8.30am I’m greeted by the transplant coordinator and told if all is good on the final examination of the organs, then they will be mine and they’ll go ahead with the transplant. Meanwhile two other patients have been brought in, just in case the heart is no good and they can still use the lungs, or the lungs aren’t viable, so they can use the heart. Hopefully someone’s life is going to be saved today. Will it be mine?

10.30 Sarah arrives to be with us. Oli is on his way to Bournemouth to pick up Rose. The transplant coordinator keeps popping in, so far, so good. We wait and wait. I’m not allowed to eat and drink.

12 noon It’s still looking good. A doctor comes to see me. I sign all the consent forms again, as he talks me through each one. I’ve already signed these when I went on the list in case of emergency, but good to go through it all again perhaps. I’m told to get ready, gowned up and given my first immosuppression medications, but we’re still waiting for those final tests.

1pm It’s a go, I’m wheeled down to theatre in a chair wrapped in a warm blanket, Rob and Sarah follow me and we say our goodbyes. I’ve gone into autopilot, I cannot think about any of the ‘what ifs’. I’m just ready to put myself into the lap of the Gods and the surgeons.

10, 9, 8, 7, 6, 5, 4, 3, 2, 1… I count down as the anaesthetic takes hold…

September 2019 Norfolk

6.30am I wake to the sound of pattering tiny feet coming down the stairs. Little Freddie comes bursting into the bedroom shouting, ‘Grandma, grandma!’ He clambers by my bedside and holds out his arms to be pulled up in bed with us. We make up games and play, no chance to be half asleep, he’s wide awake and raring to go for the day.

8am More movement upstairs, some loud gurgling from Darcy, soon Sarah arrives in the bedroom holding our gorgeous granddaughter in her arms. Darcy beams us the most beautiful smile. Freddie goes with Sarah to have breakfast and we enjoy cuddles with Darcy next.

9am We’re all up and about, all of us here together again, six years on. Six whole years, a long time ago, but so fresh in our minds. Rob, me, Sarah and Oli, Rose and David – all together again. Plus we now have Freddie and Darcy our little grandchildren and we also have Ted our much loved cocker spaniel and Finn, Sarah and Oli’s cocker spaniel puppy. We’ve grown in numbers since that day six years ago.

10am We are all together having breakfast, sat round a big table in one of our favourite Norfolk pubs, babies, dogs and all. We chat and laugh and joke and it’s so good to be away on holiday and all together for this special weekend. Rob and I celebrated our 29th wedding anniversary yesterday, today it is six years since my life saving heart and double lung transplant and tomorrow it will be Rob’s birthday.

We have seen so many family milestones, enjoyed so many special times together and life has progressed so much and moved on for us all. We are celebrating life today, all our lives, my life and my donor’s life. We are forever grateful to my donor, their family and the staff at Royal Papworth Hospital for making all of this possible.

And that is the power of organ donation.

Beautiful September

September is always such a beautiful month as the summer quietly slips away and we begin autumn. There’s those last hot days of summer, but the days are shorter and you can feel a nip in the air when there’s a breeze. The sun is lower and the light seems to give off a richer and deeper glow.

It’s a time of new starts for many with school, courses, hobbies, university and work resuming after the summer break. For some of us that don’t go out to work, it’s a time of quiet when the summer crowds have disappeared and the weather is still pleasant enough to enjoy the surroundings, go on holiday or out and about locally.

September is a time when many of the flowers and plants in the garden have finished flowering, but also a time when the most vivid and colourful autumn plants can give spectacular displays and a riot of colours. Fruit trees are laden with fruit ripe for picking too. We have apples and blackberries ready for picking in the garden. It makes me think of cooking autumn and winter comfort foods, baking crumbles and making sauces.

It’s always a month when the days seem to draw in faster and faster after the long days of summer, but with that comes the beautiful sunrises that greet you as you wake up and more chance to catch a glimpse of a beautiful sunset in the early evening. There’s always something so special about a beautiful sunrise or sunset that makes me just stop and stare.

September is a very special month for me. It’s the month when Rob and I chose to get married and we celebrate our wedding anniversary at the end of the month. September is always a reminder of our new start in life together all those years ago, nearly 29 years now.

It’s the month, also, when I received my life saving heart and double transplant, the gift of a new life and second chance. This will always make September a very special month for our family and a poignant month to reflect on what a very special gift life is, a month to celebrate life and all it has to offer. It’s also a time to feel grateful: grateful to my donor, who gave me a new life; grateful to their family for agreeing to organ donation and always forever grateful for life and the chance to keep on living it.

September is such a very special month, always a month of new beginnings.

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.