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 Flowers

After all the snow, heavy rain and misty, murky weather, spring has finally arrived at long last. The garden is finally coming alive with colour and plants are finally blooming.

There’s nothing like a daffodil to brighten up a dismal day and we’ve had many of them up to now. The daffodil is a hardy plant, however, perservering through the snow, frosts and wet of late February and March, shining through with its reassurance that spring and warmer days are definitely on the horizon.

The last few weeks has seen constant rain, low and heavy cloud and a dreary mist never far away, but a garden full of bright yellow daffodils has brought some cheer and sunshine and life to the garden at long, long last.

A few days of brighter, warmer weather and suddenly the garden has been bursting into colour, the buds are opening on the trees and shrubs are beginning to flower, starting with the forsythia with its small delicate flowers making another blaze of yellow amongst the daffodils.

Now the tulips are flowering and after a beautiful day’s sunshine have opened up in full, enjoying the sun’s warmth and glow. I brought these tulips back from a visit to Amsterdam’s flower market. Our holiday to Amsterdam marked the first anniversary of my heart and double lung transplant, so when I see the tulips blooming they remind me of a very special time.

The first year these tulips bloomed, there were just five flowers and each year they’ve multiplied and multiplied. This year, despite the awful weather, they’ve bloomed and bloomed and I’ve counted thirty five flower heads so far. They have thrived, which is very symbolic to me, having planted them to mark my first transplant anniversary.

Other little snippets of colours are appearing too – the bright blue of grape hyacinths are popping up around the borders and the magnolias are full of bud and about to flower.

With a few sunny days, we’ve tidied up the summerhouse after the long winter. It’s been lovely to sit up there again with a good book and enjoy the view of the garden springing into life once more.

Ted has enjoyed playing out and getting up to mischief, while Rob has been busy mowing and tidying up after the winter months. I love the feeling of April when there’s the whole anticipation of the spring, summer and autumn ahead to enjoy life outdoors and the fresh air and beauty of the garden.

I love to have daffodils and tulips around the house too, echoing the outside in and cheering up any dismal days and adding even more colour to those bright sunny days.

Spring is such a beautiful and promising time in the garden and the flowers give much hope and anticipation for the months to come.

The weather forecast this week is promising full sunshine and warm temperatures over the next few days at long last. I think most people are looking forward to enjoying some proper springtime. I know I am.

Fundoplication Fiasco

I thought I’d be in hospital again this last weekend, as I was rescheduled to have my stomach fundoplication operation last Friday. This was following it being cancelled the previous week at the last minute just before I went down to theatre. The whole incident had felt very stressful, especially with the added stress of struggling on public transport to get to London and back in the heavy blizzards, snow and freezing temperatures. The whole incident had taken some ‘coming down’ from.

All settled in the hotel

I was contacted the day afterwards though, with many apologies and a promise of now being a ‘top priority’ and that I would be scheduled to be ‘first on’ for my next appointment. I therefore agreed to a new date of Friday for the operation to go ahead again and all the papers were sent out to me confirming it. In some ways I had reservations, as I needed to start the mental and emotional build up all over again, so soon after the big ‘come down’. It’s an operation I know I need, but don’t particularly feel very enthusiastic about.

After all the years of procedures and operations on my heart and lungs, I do feel reluctant about having other parts of me operated on. I worry it will cause more things to be monitored, more clinics and doctors to be under, more things to possibly go wrong.

It might seem that I’m ungrateful to feel like this, but I’ve had a difficult run over the last eighteen months with my lungs and I’m voluntarily going to put myself out of action for a while yet again when I’ve only just got back on my feet.

There also comes some high risks with this whole procedure being an immunosuppressed patient, a heart and lung transplant patient and a patient with poorly functioning lungs, so I’m actually quite frightened about this and quite scared of ending up in a worse state than before.

A risk of chest infection is high due to ventilation during the process. The thought of going through something like the pneumonia again, that I experienced last spring and that damaged my lungs is terrifying. There aren’t any guarantees, but the plan is that I will be looked after in intensive care and all the risks will be of high consideration throughout.

An early Mother’s Day Celebration

So why am I putting myself through all this? My lungs are struggling to work properly now, they have less than 50% capacity. There are several problems including damage from rejection, pseudonomas, damage from infection and damage from stomach acid. Lung transplant patients often suffer from the stomach problem due to the actual transplant operation and new organs displacing the stomach and the continual use of necessary steroid medication damaging the sphincter muscle. If the problem is left uncorrected then in time the lungs will continue to be damaged and reject.

All three of my transplant consultants are in agreement that the operation will help prevent this happening and basically if I don’t have it done then my lungs will continue to decline in function and reject again. This operation is therefore a needs must despite all my reservations.

Hospital view from hotel

So off we went back to London for the fourth attempt at this operation, it had had to be cancelled a couple of times previously due to my ill health too. The weather was mild and dry so we had no extra stress and hazards with the travelling like last week. We travelled down the day before the planned operation, as it was the usual 7am and ‘nil by mouth’ start on the Friday morning.

It was Mother’s Day weekend coming up and knowing I was going to be in hospital and unwell on Mother’s Day, we met up with Rose and David and had a nice dinner to celebrate early. This felt extra special, despite the impending operation the following morning, as I’d spent Mother’s Day in hospital last year. At least this year we’d had chance to organise and celebrate. We’d had to put off any celebrations with Sarah, Oli and Freddie though, because they’d all had bad colds and viruses and I hadn’t been able to see them for nearly a month or so because of the risks being immunosuppressed.

Deja vu, 7am again at UCLH

7am on Friday morning and I turned up ‘nil by mouth’ for my surgery only to find out that I wasn’t even on the surgical list for that day. I was asked to sit and wait in case the surgery might be going ahead. We waited, waited, waited, waited…

Basically no-one did anything about it, there was no-one available to see us and no-one to explain what was happening or what had happened. After we kept on chasing the receptionist, who did her best to contact the relevant people, hours later I was eventually phoned by someone from the admissions department and advised it was all my own fault and I shouldn’t have ever turned up for the appointment as it still needed to be confirmed. I think I saw red at this point, as I was sitting there holding on to all the ‘confirmation’ paperwork!

Rob took the phone and eventually the person admitted they had copies of the ‘confirming’ letters on screen and that it had all been a mistake that they’d been sent out to me. So that was that, another cancellation, another load of stress and expense of hotels and travel for nothing and to add to it all not even an apology or any proper explanation from anyone! We were advised to speak to the hospital PALS  office, which we did on leaving. We have formally complained as the whole incident, compounded with the cancelled operation the week before has left us stressed, angry and upset. We shall see what the outcome is and how they can explain what happened.

In the meantime, I have received a new date for yet another attempt at the surgery – attempt number five. Watch this space…

As the saying goes though, ‘every cloud has a silver lining’ and I was able to enjoy a lovely Mother’s Day weekend after all, spending loads of time with Sarah and Freddie and still being able to eat and drink normally and feeling well. A huge improvement on last year’s Mother’s Day when I was poorly in hospital and much more than I had expected for last weekend. Now I’ve time to take stock, enjoy and make the most of life for a few weeks before we try yet again.

Mother’s Day flowers

January Beginnings

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.

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Back walking in the park

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!

Snow, Christmas Lights and Blue Lights

It all started with a snow day.

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.

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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.

 

 

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50 Years of Heart Transplantation

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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