Organ Donation Week

This week has been National Organ Donation Week here in the UK, so a special week to promote awareness of Organ Donation.

I’ve been deeply affected by transplant and organ donation now for over nine years and it’s a cause dear to my heart.

On Monday I was asked to do an interview with Heart FM radio for the South East. It was good to help and they played clips from my interview throughout the afternoon, so hopefully many people may have heard it and it may make a small difference.

It’s nearly time for the anniversary of my transplant and each year I think of all the wonderful things in my life that organ donation has given me.

This year’s highlight has to be the birth of our granddaughter, little Darcy. I wasn’t ever supposed to see her, but yet thanks to my donor, I’ve shared so many special moments with her already and she’s only 5 months old.

I’ve also been able to see my gorgeous grandson Freddie grow from a baby, watching all his first steps to toddlerhood. This year I’ve spent so much time with him and he chats away, his speech growing daily. We have so many lovely conversations together and make up our own games to play. Being a grandma is a wonderful thing and feels so special and such a privilege in my position.

We’ve managed a few breaks away to Norfolk and the Lake District with the family, which has felt so special too and given us many special and priceless moments to share. We don’t travel abroad any more, due to my health, but we continue to enjoy visiting the places we love and exploring all that’s around us. Sometimes we forget the beauty that’s right under our noses and don’t see it. I still feel appreciative of all that’s there to see and do, from simple things like watching the birds, seeing the flowers growing in the garden and just having a simple cup of coffee thanks to my donor.

Rob and I are still involved with our Transplant Support Group at Papworth, helping to support other transplant patients and working on projects with the transplant team. This will always be a cause dear to our hearts and feels important to us. Our hospital has moved premises this year, which has been a big upheaval and a time of uncertainty, but we are pleased that we now have a wonderful, brand new and state of the art hospital for my continuing care and that of other fellow patients.

I’ve also been enjoying a period of steady health after having had the pneumonia, sepsis and blood clot earlier in spring. Luckily my local hospital moved so swiftly and I’ve been able to make a good recovery with the help of oxygen.

Ted, our cocker spaniel, is also a big part of our lives. He will be nearly four soon, we feel like we’ve always had him and he just slots into our family life. He often comes with us on holidays and days out and just adores the grandchildren. Sarah and Oli have a new cocker spaniel puppy, Finn. He’s such a character and a live wire, but quickly becoming another established member of the family.

Thanks to Organ Donation we are living a pretty normal family life and appreciating all the good things. We’re busy with projects such as decorating and the garden too, just normal family stuff, but that is what organ donation is all about, just to enable us to have a normal and fulfilled life.

I’m still working on my next book too. If things had gone to plan, it should have been finished by now, but all my serious health issues of the last few years halted things and actually changed the course of how this story was going. I’m still working hard on it and have a first draft manuscript to work on now and I’m so pleased I’ve reached this stage.

However, I want to do a serious overhaul of this draft, as my situation health wise changed dramatically from my original plans and ideas and as it’s another memoir, I want to reflect the true essence of all that’s happened so my new book may help others in similar situations with declining health. So watch this space, it’s still a work in progress, but again I feel privileged I’m in a position to be writing and doing something I love.

Organ Donation is the greatest gift and it not only benefits the recipient, but the benefits ripples out amongst the recipient’s family, friends and community. There is no price you can put on it.

The law will be changing on organ donation from an ‘opt in’ system to an ‘opt out’ one. It doesn’t really matter which system is in place, it will be family who have to say ‘yes’ or ‘no’ if you were to be in the unfortunate position to donate your organs, so it’s most important to let your family know your wishes whatever way you feel about organ donation.

All I can say is that Organ Donation is the most wonderful thing and that me and my family are forever grateful to my donor and their wonderful family who said ‘yes’ at the most difficult time in their lives.

Thanks so much for reading 😄

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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