Friday, 26 February 2016

Raising Awareness, Raising Funds

It's two weeks now since I published my book and it's all been very exciting to see a big project coming to fruition at last after eighteen months of planning and writing. I truly hope it will help raise awareness of what it's like living with a rare and life threatening disease - in my case pulmonary hypertension - and what it's like waiting on the transplant list when there is a huge shortage of organ donors. I also hope it shows just how much organ donation can transform and save a person's life and positively affect all those surrounding that person. 

I've been pleased with all the wonderful feedback I've received over the last couple of weeks - messages from friends and complete strangers alike  - it's all been so positive and encouraging ranging from people who can resonate with the emotions and feelings expressed in the book as they are experiencing similar journeys, to people who've found it enlightening and have even signed up to the organ donor register.

It's not too long off Mother's Day now, so if you can't think what to buy...  Or if you would just like to purchase a copy for yourself click on the relevant link below:

Any proceeds from my memoir, which is all about my journey from being diagnosed with Pulmonary Hypertension, living with the disease and its debilitating symptoms and treatments and waiting for and recovering from a heart and double lung transplant, will go to benefit charities that have supported me. These are: The PHAUK and Papworth Hospital (for benefit of the respective PH and Transplant support groups). Besides raising awareness through the book, hopefully some much needed funds may be raised too - book sales have been going well, so I'm keeping my fingers crossed. 

I'm chairman of the Transplant Patients Representative Group at Papworth and we are starting up a transplant patients' support and social group, for which we will need some basic equipment and room hire costs. Our very first meeting is on March 19th and any Papworth transplant patients pre or post are welcome. The details of all our meeting dates are below: 

Saturday March 19th

Saturday June 25th

Saturday September 3rd

Saturday November 26th

I've always attended the Papworth PH Matters support group too - again the group has to pay for equipment and room hire costs to keep running. The meeting dates are listed below:

Saturday March 12th

Saturday June 11th

September 10th

Meetings for both  groups are at 12 noon til 3pm and will be held at: The Studio, Library Complex, Lower Pendrill Court, Papworth Everard, Cambridgeshire, CB23 3UY.

These two groups are very important to me and it would be great to be able to help them both. 

My family has always tried to support the PHAUK, as the organisation helped us so much through its informative website, brochures, conferences, online forum and facebook group. We would have been lost without them, especially in those early days of diagnosis. The organisation helped me make contact with other PH patients, who helped me tremendously and many of them are now lifelong friends. The PHAUK, therefore is another important cause dear to my heart. The website link is below:

In the meantime here's the link to my Facebook Author page - it would be fantastic if you could please like and share to help me spread the word as much as possible and raise awareness about Organ Donation and Pulmonary Hypertension and help me raise much needed funds through my book to aid these special causes. 

Friday, 12 February 2016

Valentine's Day and a Memoir

It is February - the month for Valentine's Day. Say 'Valentine's Day' and your mind may conjure up hearts and love. Heart shapes are all around us at this time of year - in all the shop windows and dispays, on TV, in books, newspapers and magazines and many advertisements - they seem to be everywhere we turn. For me it's very poignant as nearly two and a half years ago a complete stranger gave me the new heart that I so very desperately needed to survive and changed my life forever. Heart shapes and symbols, Valentine's and giving will always be very significant to me.

I was lucky enough to receive new lungs too - it is quite a rare operation to receive both heart and lungs these days because of the shortage of organ donors. There are only on average around 5 or 6 heart and lung transplant operations now undertaken in the UK per year. It was Pulmonary Hypertension that caused me to need a new heart and new lungs - a rare and relatively unknown disease. So on diagnosis of this, I found myself in a battle to survive both a rare disease and a rare operation.

I've just set up my new author website (link above) and at long last I'm delighted to say that my memoir 'Life is for the Living' has now been published and is available on Amazon both in paperback or to download on Kindle - just in time for Valentine's Day.  It is my personal story about battling the odds with Pulmonary Hypertension, waiting a long wait for a heart and double lung transplant and then finally receiving the gift of a new life.

I hope the book can help raise awareness of both Pulmonary Hypertension and Organ Donation. My memoir gives my own perspective of what it is like to live with a rare, chronic and terminal illness, which is often misunderstood and what it is like to wait a long wait on the transplant list, when there is a chronic shortage of organ donors. I think it may resonate with anyone who suffers from the disease and anyone who lives with chronic or terminal illness or has been affected by the transplant process. 

Most importantly, I hope it can show people what a miracle transplantation can be - especially in the light of the fact that three people still die each day on the transplant list in the UK because of the lack of organ donors. Hopefully it may encourage others to sign the organ donor register - already a couple of people have told me they've signed the register since reading my book and so soon after publication, so it's been well worth writing it already. 

For me, it's always been a lifelong ambition and dream of mine to write a book one day and thanks to my generous donor I've been able to realise this dream - yet another one. This week when my first copies of the book arrived in the post it was most incredible to be able to say, 'I'm holding my dream in my hands!' My gift of a new life doesn't ever cease to amaze me. 

It's been a therapeutic process for me to write a book, but if it can help someone else - perhaps to feel less isolated about what they are going through with an illness or perhaps to encourage someone who's waiting a difficult wait for a transplant - then once again it will have been worth every minute of writing. 

For readers whose lives aren't or haven't been affected by any of these issues - my book is simply a story of an ordinary family finding ways to cope and overcome adversity; a story of love, human warmth and an extraordinary miracle. 

I planned the publication of my book purposely for February and as near to Valentine's Day as possible, as it feels so apt and significant to complete and release it during this month of hearts and love. My mind turns automatically to my donor and their family -  the kind strangers who unconditionally gave me my second chance to enjoy more time with my family and friends - all those I love. 

I also think of all those that I've both loved and lost during this incredible journey - they will be forever in my heart and I'm indebted to many for the love and never-ending support they gave me. And I think of those who are still battling severe illness - those who still wait in hope for a cure or a transplant. Never lose hope - it is always there waiting in the darkest of corners when times are tough. 

To all my friends and readers enjoy this weekend and happy Valentine's Day.

(Heart photos: