I'm a lifestyle blogger – blogging on health, writing, books, travel, photography, gardening, nature and simple musings on life. I just so happen to be the recipient of a heart and double transplant and an avid campaigner for organ donation.
The days have been so grey and miserable during January so far, not very uplifting after all the glitz and fun of the festive season, but we have had an odd day where the sunshine did try and put in an appearance.
Last Wednesday afternoon, the day brightened up after a very misty and wet start, so trying to make the most of it while it lasted, we ventured to one of our local parks, Fairlands Valley Park in Stevenage. I had my camera in tow, which felt very uplifting, as it seems such a long time since I’ve been out and about enjoying my photography.
We enjoyed spotting all the wildlife – the gulls, ducks, geese, swans, coots and moorhens and more. They seemed to be enjoying themselves in the milder sunshine too. As we wandered around the lake, there was a threatening black cloud over in the distance, but the breeze was holding it off and it felt a much warmer day with a little sun shining down on us at long last. Almost a pale promise of spring beckoning.
I love all the redwoods down by the lake and at this time of year they stand out at their best and especially with the golden afternoon light flooding down on them.
All was really pleasant and we headed around the lake towards the cafe. It felt warm enough to sit out and have a cuppa outside, as we were all wrapped up in warm coats and the usual hats, scarves and gloves for this time of year. We had Ted our dog with us and baby Freddie was sleeping soundly in his pram, so we needed to be outdoors. I enjoy sitting outside and looking at the views in the fresh air anyway, even in january.
Unfortunately the wind started to blow in a new direction and the usual January big dark clouds seemed to lower down on us. Suddenly it felt very cold again and rain was in the air, so we skipped the afternoon tea and carried on our walk, managing to get home and dry before the heavy downpour began.
It was lovely to see and feel the sun though, and enjoy a pleasant January walk. At home, I’d left a joint of pork slowly cooking ready for dinner. Nothing like hearty warming food on these cold winter days and the aromas of it cooking when you walk back into the house from the cold and grey. Hot pulled pork, served on warm buttered ciabatta bread with slow cooked winter veggies – delicious…
Happy New Year to each and every one of you. I think everyone will be well underway trying to stick determinedly to those ‘New Year’ resolutions now that we are well into January.
For me, I have ‘New Year’ hopes rather than resolutions. 2017 was a very difficult year health wise, probably one of my most trying yet. I started 2017 with losing some of my lung function due to episodes of rejection in my lungs and then I lost more as the year progressed following bouts of pneumonia and flu.
It was the year I had to face the fact that my transplanted lungs weren’t functioning as well as they did in those first few years after transplant. It was a hard thing to deal with, to suddenly be facing those pre-transplant fears and ill health experiences all over again for a second time around. From the post transplant euphoria, I felt like I’d been brought back to earth with a big bang at times.
Autumn brought more problems with chest infections, norovirus and adverse reactions to drugs, coupled with stomach problems causing lung damage too. A planned stomach fundoplication operation had to be cancelled over and over as my health was too fragile. I’m still waiting for that to go ahead yet.
The year finished as it had gone on, with a stay in hospital due to another chest infection and then another bout of norovirus in between Christmas and New Year. It felt as though my health had driven a lot of what I was able to do or not do during the last year.
At the same time I’ve felt very positive, because with every incident I’ve managed to bounce back and feel better and although my lung function has fallen dangerously low at times, somehow or another I’ve managed to improve it and bring it back to nearly 50%. That’s only half of what it used to be, but it’s enough to manage with and the outcome could have been far worse. It’s a massive positive.
I’m forever thankful that I’ve managed to keep my lung function stable and that in between all these bouts of being unwell, I’ve been able to enjoy life and precious family time and have had so much wonderful support from friends.
Now we’ve arrived in January, I’m thankful and pleased I’ve managed to start another New Year feeling brighter and better again.
With a New Year comes renewed hope. Hope that I can put all these infections behind me once and for all or at least for a while and hope that I still may be able to improve my strength and lung function and feel healthier.
At the start of the New Year, I returned to my Transplant Clinic for more tests and to see my consultant and we came up with a plan to try and kick start my health again and try and reduce the amount of infections I’ve been having to deal with.
The plan involves reducing my immunosuppression, which has been high since I experienced the acute rejection episodes. Immunosuppression that’s too high can cause infection and infection can lead to rejection. Immunosuppression that’s too low can also cause rejection, so it’s all about finding the correct balance again.
My consultant also suggested various vitamin supplements, which may help support me in becoming stronger, as all the series of infections has left me very vulnerable and weak to catching more. Most importantly, we came up with a physio plan too: physio always being a big part of recovery and the transplant process.
So with a new year and a new plan of medication, vitamin supplements and physio now well underway, I’m feeling very optimistic and full hope for this coming year. Like many others this January, I’ll be working hard on my exercises. For me, it’s on doctor’s orders and isn’t the typical ‘New Year’s Resolution’.
I’m working on a programme of gentle yoga and walking exercises with the aim of increasing my activity as I become stronger. It’s nothing new to me and they are activities I’ve tried to do over and over but I’ve kept being stopped in my tracks by infection before I could get myself strong enough. It hasn’t really been for the want of trying. It’s a little like when I worked on regaining my strength following transplant now and my consultant thinks if I can have a good run at all this, then my lungs may become even stronger and my breathlessness could ease a little.
My New Year hope is that I can have a clear run at building my health and strength back up properly and then I believe with that will come the chance to move forward this year with new experiences and new adventures. I’m off to a good start now and hope there will be plenty of them.
Here’s to a happy, healthy and adventurous 2018 and hello and happy January!
I always love the snow, especially now when I don’t work any more and don’t have to feel forced to drive in it or venture out. It was quite lovely to wake to heavy snowfall on a Sunday morning; it meant most people didn’t have to drive or go out unnecessarily and families could enjoy and have fun in snow properly together.
The garden was transformed to a sea of white and there’s nothing like treading in untouched snow, making those first footprints and tracks. The park and pathways behind us looked beautiful too. It was the weekend, early December and we were putting up our Christmas lights and decorations; everything felt Christmas perfect with the snowy backdrop.
I’d caught a cold over a week ago though and found I couldn’t breathe if I tried to venture out in it. I’d thought I’d been doing well and all was under control, but the cold left me gasping and I couldn’t catch my breath back when I started to lose it. I knew I had to stay indoors, keep warm and rest. I knew things were deteriorating though – that horrible feeling when you know with lungs that already don’t function at the best of times, that you are going to need some extra help.
I sought advice, doubled some medications and hoped I’d wake up to a better day. Monday morning and it was formally declared as a ‘snow day’. Roads were icy and dangerous and the snow and sleet were heavy. We phoned for an emergency doctor’s appointment, as things had become much worse. As I tried to get ready to go for this, my breathing was slipping and slipping downhill. Somehow Rob bundled me in the car, after having to spend half an hour digging it out of snow and clearing the drive.
We arrived at the doctor’s surgery and managed to park outside. I managed to climb out of the car, but the cold took my breath and Rob had to leave me clinging on a wall, while he retrieved the wheelchair from the car. Somehow he managed to put me in it and manoeuvre it through the snow and ice and we eventually arrived inside covered in drops of snow and sleet and dripping wet.
Then our wonderful NHS went into action.
Two doctors and the practice nurse helped me, I was put on oxygen and a nebuliser, then paramedics swiftly arrived and took over. From the sparkly Christmas lights and beautiful white snow of the day before, we went to blue lights and sirens as the ambulance ploughed through the slush and sleet of a grim grey day. Like the staff at the doctor’s, they gave me first class care and were kind and reassuring.
The same again once I arrived at hospital, a team waiting for me and three people working on me straight away, as I was rushed in a side room – everyone kind and helpful as they worked. Then calm and relief as my breathing began to stabilise. Then I was taken to the respiratory ward, another side room and more wonderful care for eight days while they treated me and looked after me, liaised with my transplant team and left no stone unturned until they had me fully stable and well enough for home.
Then it was a visit to Papworth, my transplant centre, for more tests and checks, just to be sure everything was going in the right direction. Once again, more first class care, with back up over the holiday period and more checks for early new year planned.
Now I’m home and well enough to enjoy Christmas with my family and it’s all thanks to those numerous NHS staff who helped me with such expertise, care and total dedication to make me better.
I cannot thank them enough and all the kindness each and everyone one of them showed me while I went through what felt like a traumatic experience. Another ‘snow’ story on the family list – we have a few of them. They’re usually about being stuck in ‘snow’ traffic jams for hours on end, having to abandon cars and walk for miles to get home – that sort of thing. This one will be another to remember and smile about one day…
I’ve had so much care from the NHS this year and they’ve kept me bouncing back each time. I just want to say a massive thank you to everyone who works for the NHS to help us all stay well and healthy. Many of the NHS staff will be working hard and saving lives over Christmas, so here’s wishing that they manage to enjoy some peaceful and lovely time with their friends and families too during this festive period.
Now it’s Christmas Eve and I’m so pleased and relieved to be home and feeling that all is much better again. I want to thank everyone who has followed my blogs this year and given me encouragement and support through all the ups and downs with my health.
Wishing you all a very Merry Christmas and a healthy and happy New Year.
We’re well into December now and when we’ve been out and about recently it’s become noticably colder and the days are definitely becoming much shorter. Some days have just been grey, dismal and cold, but on many days I cannot help but notice how beautiful and magnificent the sky can look at this time of year. I suppose we’re having later sunrises and earlier sunsets with more extreme and changeable weather conditions from gales and rain to calmer sunny days with frosts and this week we’ve even had snow. The changeable skies become much more poignant at this time of year.
I’m never so sure when it comes to defining ‘winter time’. The astronomical winter season is defined by the tilt of the earth in relation to the sun, making the winter solstice officially starting on December 21/22nd. The meteorological winter begins on the 1st December, as the seasons are split into four periods of three months each, winter being defined as December, January and February. I think I’m inclined to go along with the meteorological theories, I always think of December being winter time and this year, the temperatures definitely did take a dive on the December 1st and we’ve already had a fall of snow. January and February always still feel like winter to me also.
The sky seems more noticeable at this time of year, the landscapes are more barren and as we usually wake up to the sunrises and see the dusk fall in the late afternoon, I think the shorter days enable us to appreciate the daylight we have.
This week marked 50 whole years since the first heart transplant. As a heart and double lung transplant recipient, to me, this is a very poignant anniversary. Basically, I would not be alive and even writing this if it wasn’t for those people who were willing to push the boundaries of science and experiment with medical concepts which go beyond the pale.
The very first heart transplant was carried out by Dr Christiaan Barnard, a surgeon at Groote Schur Hospital in Cape Town, South Africa. The recipient was Lois Washkansky, a patient terminally ill with heart failure. The donor, Denise Darvall, was a twenty five year old who suffered a fatal brain injury in a car crash. Her father, knowing she liked to help others, made the generous decision to donate her organs. I think all of us heart transplant recipients are thankful to these pioneering people, who were at the forefront of the whole process of heart transplantation.
Heart transplantation has developed in leaps and bounds since then, with Sir Terence English performing the UK’s first successful heart transplant with long term success in 1979. This was due to the development of ciclospororin, an immunosuppressant that stops the body rejecting the heart.
There are still challenges with heart transplantation. Firstly, the shortage of organ donors poses a problem. Fewer people die in circumstances where it is possible to donate organs due to advances in medicine and things such as improved car safety. Then, there is the fact that although patients are signed up to the organ donor register, families still refuse to give consent to an organ donation. This is usually because they didn’t know their loved one’s wishes.
Only 33% of the English population have signed up to the organ donor register with the ‘opt – in’ system currently used in England for organ donation. Whatever the system, ‘opt-in’ or the ‘opt-out’, that countries are using, it is so important to discuss your decision about organ donation with your family, whether you wish to be an organ donor or not. In the UK, families can override their loved one’s wishes.
There are also still issues with rejection and there is ongoing research to develop anti-rejection medication to help improve the long term life expectancy of heart transplant recipients. Existing anti-rejection medications come with a number of problems – they have to be taken for life, cause difficult side effects and cause increased risks of infection and cancer. As many heart transplant recipients will know, it can be a constant battle of balancing anti-rejection medications, with medications to prevent infection and side effects.
As a heart transplant recipient, I’m forever grateful that I’m living in an era where this procedure has been possible and has enabled me to have extra years with my family and friends. It’s hard to imagine that just over 50 years ago, this procedure wasn’t even possible and amazing to contemplate just how much the whole process of transplantation has developed since then. Having a transplant has meant I’ve been able to live life to the full and reach many special milestones in my life during the last few years.
This special anniversary has made me stop and think about all the people who have helped to progress the process of transplantation to where it is today. I shall always be grateful to them. It is thanks to them that I can enjoy my life here and now. I’m always forever grateful to my own surgeon and his team, who performed my transplant and my transplant team who look after me constantly to keep me in optimum health. The whole team continue to strive for improvement to the transplant processes and improving our quality of life through research.
Recently, Papworth Hospital was the first UK hospital to perform Europe’s first heart transplant from a non-beating heart donor. (DCD Heart transplant programme) Another enormous breakthrough in the process of heart transplantation and a way forward to help increase the number of possible heart transplants being performed. The DCD heart programme is currently being rolled out to all the other heart transplant centres in the UK
It goes without saying, that non of these processes would be possible without our donors and their families, who give the consent to organ donation. I’m grateful to my donor and their family each and every day for the new life they have given me.
Have you ever wanted to revisit those memories of your childhood?
I’ve been visiting Cumbria the whole of my life, Rob and I spend a lot of our spare time there. We’ve visited so many places in the vicinity both touristy ones and those that are more out on the beaten track – the places to go are endless and there’s always somewhere new where we haven’t ever explored.
On a recent visit, I kept on thinking about a beach my family used to visit when I was a young girl. We’d had a few caravan holidays there – one had been during a glorious summer – you know one of those we often remember when we think of summer holidays in our younger days. We’d spent hours playing on that beach and paddling and splashing around in the sea.
We’d stayed again the following year – that time it rained and didn’t ever stop, so much so that in the end my parents packed all the bags up and we came home early.
The stay during the glorious summer is the one I recall. I decided to go in search of this lovely sandy beach at Sandscale Haws just for old times sake. I was totally delighted to find that it belongs to the National Trust and is designated as an outstanding dune habitat, which supports a wealth of wildlife including Natterjack Toads, rare plants and a wealth of bird life.
The beautiful sandy beach has far reaching views across the Lake District and overlooks the stunning Duddon Estuary – we often explore around this estuary and the River Duddon, an area of the Western Lakes that is relatively quiet and unspoilt.
It was a pleasure to rediscover it all over again.
Continuing on the nostalgic theme, I had an overwhelming urge to have a drive through the Blackpool Illuminations – again it was something we always did as a family when I was young and again with my own children when they were little.
When we arrived at Blackpool, I couldn’t quite understand why it was so quiet. I was remembering heaving traffic jams on the seafront, but on this visit we were the only car driving down by the promenade and there were hundreds of parking spaces.
It was as though we were experiencing our very own personal Illuminations display. We found out later that the light display had finished over a week ago and that they had put the Illuminations back on just for that evening because Strictly Come Dancing was being held in the Blackpool Tower. We had just got lucky!
It was lovely to take a few trips back to those memories of childhood and make more new ones.
It’s nearing the end of autumn as we head towards December. Although we’ve had some rainy and dull days here and there, I think it’s been a truly glorious autumn. We had a very dry spring, followed by quite a wet summer, which helped the thirsty trees play catch up. With that has followed some stunning tree displays, which have continued on through October and into November.
There’s been some glorious sunrises too, and Rob and I were recently in Cumbria and took the opportunity to watch the sun come up over the Dallham Estate on a very cold and frosty morning.
A simple pleasure, but a priceless one. There’s nothing more beautiful than seeing the breathtaking sight of a brand new day dawning. It gives the sense of empowerment to start afresh and put yesterday’s stresses and worries away and into the past.