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.

Happy January

Well Happy New Year everyone, or it’s probably Happy January now that all the festivities are long over and well behind us. I hope you all had a wonderful time and enjoyed a rest with some quiet family time.

For me, a New Year always brings thoughts of what may lie ahead and wondering what may be in store both for me and my family. A whole new fresh year waiting in front of you can feel so exciting.

We enjoyed a lovely December and Christmas and that’s partly because there were total zero hospital stays. Anyone who has been following my blog over the years will know that December or Christmas seems to guarantee a bed in hospital for me at some point. This has happened ever since I was diagnosed with Pulmonary Hypertension and continued on after my transplant except for the second year after my transplant. Eight out of the nine last December’s has been marred by this, so this year I can safely say two out of ten have now been hospital free and I am so pleased and relieved about this. Hopefully this is a sign the pattern is being broken. I hope so.

It has meant that I’ve had a strong start to the New Year, so I’ve been trying hard to keep as active as I can. It can be difficult with lungs that function at less then fifty per cent, but in colder weather it can be even harder, especially if there is a cold wind. I’ve been trying to get outside as much as I can though and walk at my own pace as far as I can manage. I see my walking as vital to keeping my heart and lungs as healthy and stable as they can be, so keep pushing this within my limits. We’ve had some beautiful January days and it’s always uplifting and good for the soul to see some sunshine and go for a walk outdoors.

We were in the Lake District in early January and were blessed with a couple of days of beautiful sunshine. We were able to get out and about with the cameras, taking lots of photos and enjoying all the magnificent views and some lovely walks. It was bitter cold, but it can feel refreshing and invigorating to wrap up warm and cosy and just go with whatever the weather is doing. The weather is also an excuse to warm up and rest with a hot coffee in cosy cafes and eat warm comforting food in a pub with a roaring log fire!

And New Year resolutions? I know many people use the start of the year to make resolutions. This year, I haven’t bothered, that doesn’t mean I don’t care about things and have lost interest or anything or don’t want to try anything new; in fact it’s the total opposite. I just want to keep on doing all I’ve been doing, which involves spending time with my family, catching up with friends, travelling and visiting places old and new, continuing our work with the Papworth Transplant Support Group and the hospital and keeping up my photography, reading, writing and working on my second book. The list is probably endless and being mum and grandma is a big priority for me nowadays, so not much point in adding New Year resolutions to my list of ‘to dos’.

We have lots planned over the next few months – it’s always great to have lovely things to look forward to. Before January ends we have Burns Night and Freddie’s second birthday celebrations, yes he’s going to be two very soon. Where has the time gone? Then we have more birthday celebrations and a family wedding in February. March is a huge month and life will change again as ‘grand baby’ number two is expected. Life feels very busy, busy, busy and seems set to continue so, which is just how I like it.

I was back at Transplant clinic last week, I managed to go the whole two months without needing to phone up and visit clinic, which has been a first in a very long time. We were all pleased with this, my consultant included. Everything is looking fairly stable and my consultant decided that my ‘winter’ anti-biotic nebulisers should become a permanant part of my daily meds rather than just for winter. It’s a way of keeping the incurable pneumonia in my lungs at bay and it does seem to be helping so far. I’m happy with that and very pleased things are relatively stable. I have to go back in another two months and they are arranging a few extra tests just to investigate the breathlessness further and ensure they are on top of things.

I think that’s all my January news so far, it’s been a little while since I’ve posted as I decided to have a little break over the festive period and cut back on the social media for a while. I hope you’ve all had a good start to the New Year and have lots of things planned and to look forward to.

Thanks for reading as always and Happy January to you all…

Here’s to November

We start November and I feel that cringe deep inside about those long, cold winter months ahead and those shorter days and longer nights. I also have that fear of more bugs and hospital, which seem to have become a bit of a winter tradition in my life as much as Christmas is. As we move nearer to winter time, I find myself needing some motivation and inspiration to conjure up of all those good things about these darker months.

On the health front, I’ve had my flu jab and I’m on preventative measures to help my lungs over winter. I’m at clinic for checks every few weeks. I’m trying to keep fit, rest, eat well and avoid the bugs where I can. I know I’m as prepared and ready as can be, so it’s just a case of one step at a time and taking each day as it comes and fingers crossed to stay in good health.

As for the rest, the start of November has been such a pleasant surprise. It has been very cold compared to the milder temperatures we’ve had recently, but some of the days have been so glorious and sunny that we’ve wrapped up warm and been out and about in the countryside. We’ve been enjoying all what remains of the stunning autumn scenery – those golden trees and leaves against brilliant blue skies and fluffy, high clouds.

It’s scenes like this that have reminded me that the winter months can be just as much fun as those of summer and have me thinking of all the positive things to look forward to.

It’s lovely to dig out those warm winter coats and woollies, those snuggly scarves, hats and gloves in anticipation of cold, crisp walks with our dog, Ted. Those walks on a Sunday while a roast is cooking in the oven. The warm house and delicious smells when you return.

If you don’t want to cook, a country pub with a roaring log fire is hard to beat. I remember walking into a pub high up in the hills on our way back from Christmas shopping in Bowness last year. We were the first to arrive at lunch time and were given a huge welcome and told to sit by the fire – it was a perishing cold day. They piled more logs on the stove for us and we warmed ourselves while we waited for a delicious hot lunch.

Then there’s preparing hearty winter dishes for dinner, cosy dinners by candlelight and cosy nights by the fire with the curtains all drawn. The dog by my feet – or more often than not snuggled up beside me. Soft cosy clothes, socks and slippers. A cold and dark night is a great excuse to wrap up under a blanket in favourite chair and read or indulge in watching a box set or two. Of course, scented candles are a complete ‘must’ and that’s after a long pampering soak in a hot bath.

Then there are the glorious sunrises and sunsets to enjoy – the sunrises are late enough to catch a glimpse of when you wake up on a winter morning and the sun sets nice and early and well before bed time. Then the excitement of waking up to fogs, mists, heavy frost or snow – not so exciting if you have to go to work or travel – but beautiful if you can watch from inside and go about your day without the hazards to worry about.

Then there’s the glamour and glitz of ‘Strictly’ – now a recognised winter staple – the sparkly costumes, the fabulous dancing as we move through Halloween, Bonfire Night and towards Christmas.

Christmas – it’s probably the biggest most excitable thing looming as we step into November. November is the time I usually finish off buying all the presents and start the wrapping in readiness for December. I love a Winter Market or a Christmas Market. We’ve even managed to visit one already last week at Holker Hall and it was such a perfect sunny day – beautiful stalls with an assortment of wonderful goodies, warming pit fires, a live jazz band and delicious hot food and drinks.

I love the build up to Christmas – the anticipation, the preparations and then the actual festivities and day itself. Christmas shopping, Christmas carols, Christmas concerts and Christmas parties.

Well, I think I’ve found enough lovely things to think of for now to inspire and enjoy myself until January at least! What do you enjoy about the winter months?

Happy November everyone!

Midsummer

We’ve just had the summer solstice and the longest day of the year. We’ve been enjoying some beautiful and sunny warm weather this June, which seems to have continued on from spring. It feels like summer has been here for a while now.

The garden is in full bloom, bursting with Roses, honeysuckles and an assortment of beautiful flowering perennials. Colourful annual plants are tumbling out of pots and hanging baskets.

The lovely warm weather has made it a joy to be out in the garden every day either tending and tidying plants or simply relaxing and enjoying the birds and flowers.

Lots of you have been asking about my health and I’ve deliberately kept quiet on this front, as I don’t want to jinx anything, but I’ve been feeling much better now than I have in a very long time. After all the battles with rejection, infections and pneumonias of the last year or so, somehow I’ve pushed through and things seem steadier now and I’m feeling much fitter and stronger.

The weather has certainly been a good motivation for getting out and about and increasing my exercise capacity, pushing those lungs and building back my strength. I’m so grateful for this, it really does make me appreciate life and the chance to enjoy all it offers. I’m hoping things continue like this alongside with this lovely sunshine and the summer days to come.

Spring Time

Last week we had the spring equinox on the 20th March, marking the astronomical start of spring and the days becoming longer than the nights from now on. The signs of spring are all around us with new buds, blossoms and shoots on the trees and all around the garden. The daffodils are beginning to bloom, which usually signals that springtime has definitely arrived.

The weather seems to be confusing us though, giving us the odd day of warm sunshine and a promise of spring in the air, only to knock our hopes back with strong Siberian winds, cold and snow.

I’ve been trying to do plenty of enjoyable things since the stress of the last few weeks with the cancelled operations. We’ve enjoyed a few meals out and I’ve enjoyed cooking lots of my favourite recipes. Eating and drinking at the moment is giving me lots of pleasure for a few reasons.

For months and months up until recently I’ve been battling infections and having to have various concoctions of antibiotics and drugs, and this combined with a few bouts of norovirus had resulted in me losing my appetite and only being able to tolerate very plain and simple foods. With all this I’ve also lost so much weight, my clothes have actually started falling off me and I’ve had to start altering many of them to fit me.

Recently, I’ve been feeling so much better, managing to exercise more and with big reductions in my immunosuppression drugs and a good few weeks now of no infections, my appetite has come back and I suddenly seem to be able to tolerate eating normally again. That feels wonderful after months of eating so frugally.

Obviously, if my stomach fundoplication operation had gone ahead, it would have affected my diet for a while again and at this point I would probably still only be able to eat pureed and semi-solid food. At the moment something as simple as eating and drinking feels pretty special and with it comes the guilty pleasure of having been given some respite from the liquid and pureed diet that I hadn’t been looking forward to very much.

We’ve also enjoyed a few visits to the theatre and days out when the sun has been shining. On a visit to one of our favourite places, Wrest Park, we actually managed to have lunch sitting outside, it was so mild and spring like.

I had a full clinic review at Papworth last week too and had the great news that my lung function has improved. It’s the best it has been for eighteen months. I was absolutely delighted about this and it’s inspired me to keep on pushing my exercise regime and strive to improve my lungs even more.

I’ve a new date for my surgery now and UCLH have been taking my complaint very seriously and have spoken to me on several occasions to both apologise for the mistakes that have been made and to assure me that procedures are in place to avoid the same happening to other patients in future.

I’ve had hospital every week for the last six weeks, but now have some respite until May when my surgery is planned to take place. It feels like a more relaxed time now. Time to enjoy Easter and special time with family and friends and generally make the most of a good run of health. I now have a good few weeks to try and build on becoming even fitter and fitter in readiness for the surgery.

Hopefully better weather will be on its way too, enabling us all to venture out more and enjoy this special time of year.

Have a happy Easter everyone!

In the meantime here’s a few spring photographs (some from Wrest Park) to enjoy…

February and So Far, So Good

It’s nearing the end of February and I feel I’ve managed to do so much this year, getting out and about and trying to make up for all the lost time during the autumn months when my health wasn’t at its best.

I’ve enjoyed much precious time with family and friends, meals out and trips to the theatre and celebrating some of those annual routines on the early year calendar like Burns Night, Pancake day and Valentines Day amongst lots of other activities.We also managed to escape to the Lakes for a few days, where we enjoyed some beautiful sunshine and bright, crisp winter weather.

Then there’s been just very simple things to enjoy such as walks in the park with Ted, looking after my grandson Freddie and having him stay over and just seeing and enjoying those first signs of springs – the first snowdrops pushing through and bloooming and now crocuses and early flowering daffodils.

It feels lovely to be well enough again to do so many things both ordinary and special ones and I always feel a new appreciation in the times when my health feels better, especially after the difficult runs.

There’s been more hospital too – my clinics are still monthly, which have gone well and I’m pleased my transplant team are keeping a close eye on me after all the problems with infection and the big changes in my medication. All three of my immunosuppression drugs were halved in dose, which has made me feel much better and brighter and some of the horrible side effects that come with them have begun to recede. That’s been an unexpected bonus, as I’d just become used to living with them over last year.

I still managed to pick up another infection at the beginning of this month though, but luckily going to clinic regularly, we managed to nip it in the bud with another course of antibiotics. It’s a huge improvement over the continuous infections before Christmas. They also did extra heart tests at clinic to make sure there aren’t any new problems there that may be contributing to my breathlessness. Luckily, these were all satisfactory, so the big focus is still on trying to make my lungs stronger.

To this end, I’ve been managing to keep up the exercise regime and have successfully increased my daily walking  It doesn’t come easy, as I become breathless if I walk at a ‘normal’ pace and if I try and sustain my walking. I try and choose walks that are reasonably flat and that have benches or cafes somewhere along the route to rest and get my breath back.

Over a day though, it can be surprising how much you can do if you try and move around regularly and add in a short walk, obviously pacing it out in between resting. Not having the oxygen running through your lungs efficiently can make you very tired, so rest is as important as the exercise to me. I’ve also been keeping up the yoga, just gentle stretching, bending and breathing exercises together with following a programme of exercises for Pulmonary Rehabilitation.

I do think that the exercising together with my drug changes has made a big difference to my fitness and I feel much stronger for it. Last week I was at the University College Hospital London, to start the process again for the Fundoplication operation. It’s a stomach operation I need to prevent further rejection and damage to my lungs and unfortunately it had to be cancelled several times due to me being too unwell. I’ve another visit for a pre-op assessment yet and then fingers crossed, the surgery should go ahead and I’ll be able to put this behind me soon and hopefully carry on getting stronger and even improve my lung function a little more.

These first months of the year have gone well. So far, so good…

Photos below taken at Brockhole Visitor Centre, by Lake Windermere on our recent visit to the Lake District

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