Pulmonary Hypertension Awareness Week 2018

This week it’s Pulmonary Hypertension Awareness Week. Pulmonary Hypertension (PH) is the disease I had that resulted in me having to have my heart and double lung transplant. A transplant was the only route left after having had all the end stage specialist medications available for PH.

Having my transplant has always felt like an aternative treatment for my PH – yes a drastic one and not a cure. It’s a treatment that comes with huge risks and swaps one set of medical problems for another, but it’s a treatment that’s enabled a much better quality of life for me and has given me five extra years with my family so far – years I just didn’t have when I was terminally ill and suffering with end stage disease.

PH is high blood pressures in the lungs, which eventually causes damage to both the heart and lungs. It is an incurable, life limiting and terminal disease, which impacts enormously on the quality of life of PH sufferers. It is also a very rare and complicated disease, as there are different types of PH, different causes and differing treatments according to type. Treatment is very specialised and the specialist medication can only be prescribed from one of eight specialist centres in the UK, which includes Great Ormand St childrens’ hospital, as PH affects babies, children and people of all ages.

It’s also one of those ‘invisible diseases’ in many cases – well no-one can actually see your heart and lungs like they can a broken leg can they? As it’s rare and invisible, it can be very isolating for a PH sufferer; it’s often misunderstood, often mistaken for just ‘high blood pressure’ and even most medics don’t understand it or its complex treatments. Hence there’s a great need to raise awareness.

PH can be very difficult to diagnose too, it’s often mistaken for other conditions such as asthma, it often takes a few years for a patient to be diagnosed properly. In my own case it took nearly fifteen years! I’d never even heard of PH, let alone its signs and symptoms. The signs and symptoms are listed on the poster below:

Why would anyone be bothered about understanding more about PH when it’s so rare and only 7000 people on the UK are diagnosed with it? Why would anybody even care?

Well, I wish I’d known all about it and heard of it. If only. It may have prevented me being diagnosed as being in ‘end stage’ disease and being given only a few years to live. I could have perhaps received the specialised treatments earlier. You never know what’s round the next corner and it can happen to anyone.

Also, as it’s an invisible disease, PH can be very isolating. People kept telling me how well I looked, they didn’t quite understand the real impact it was having on my heart and lungs and how severely it was affecting my daily life. Every time I ended up in a general hospital, it was terrifying too, as most medics had never heard of it or if they had, they had no proper understanding of the various types of PH and the specialised medications. Raising awareness, therefore, is so important.

PH will always be a part of my journey in life; a part of my story; a part of where and who I am today. Despite how awful and scary this disease has been, there’s been some positive things to come out of my journey with PH too. I think I’m stronger and richer for it in many ways. It’s given me a real appreciation to be mindful and live in the moment and not dwell on the past or the future, but just to live for today.

Most of all it’s brought me many new and long lasting friendships. It still does. It never stops surprising me, how many people touch my life because of PH. Then there is the kindness and goodwill of so many people that have helped and supported me to overcome so much. They still do. The medical teams that have supported me, both my PH and transplant teams have also become like second families and Royal Papworth, my hospital, is like a second home.

I always say that if raising awareness of PH helps just one person, then all the campaigning and every minute of raising awareness is worth it.

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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