'Life is for the Living' - One Year On

It's been a year now since my book 'Life For The Living' was first published. Writing and publishing a book was a dream come true for me and had been something I'd always wanted to do from being a small child. I think it all stemmed from my love of books and reading. As a child I would read and read and spend my pocket money on books. I've always been a bookworm I think. 

There was nothing like that feeling when the first manuscript was completed. Then followed the final redraft and editing through to designing the book cover and finally pressing that 'publish' button on Amazon. Then the boxes of newly published books arrived and I held my own book in my hands for the first time - proof that you can make a dream come true. I was actually holding my dream in my hands! 

It felt a little strange to physically download a copy of my own book on my Kindle and be able to read something that I'd written myself on there. These were big 'highs' after the hard work of writing. Writing the book through to publishing it had taken me 18 months or so, endless hours of writing and note making at all times of day and night when ideas popped in my head. I'd felt both relief and euphoria to have all those thoughts and feelings that had been swirling around in complete chaos in my head, all organised and packed into a memoir at long last. 

Then came the book launch event, again a little surreal, but a fantastic opportunity to celebrate both the book and the wonderful gift of organ donation with friends and family. It was also my first chance to sell hard copies of my book and raise funds for causes very close to my heart. I'd decided beforehand that I would donate any proceeds from the book to Papworth Hospital Charity, the PHAUK, Papworth PH Support Group and Papworth Transplant Social and Support Group. 

A group of us were in the middle of setting up the Papworth Transplant Social and Support Group and we managed to hold a raffle and receive a couple of big donations at the event to help us on our way. I hadn't really set out to fundraise, my main aim for the book had been to raise awareness of Organ Donation and Pulmonary Hypertension, but thanks to everyone's kind generosity this was a lovely surprise. 

I was thrilled to have written the book, but even more delighted as the book began to sell and I was able to make donations to the various causes I had chosen. To date I've sold over a thousand books and sales are still ongoing. The book and raising awareness of Organ Donation and Pulmonary Hypertension will always be an ongoing project. 

I was lucky to be supported by Papworth Hospital and Rob and I attended several events where we were able to talk about the book and help raise awareness. My transplant team and especially my transplant surgeon also helped me to promote it - not only did he save my life but he was now helping me in my new life! Also, I've managed to accumulate over 30 plus reviews on Amazon, mostly 5 star, which has helped immensely, as Amazon promotes books for free depending on the amount of reviews. If you've read the book and are an Amazon customer and fancy writing a review, not only may it help with sales, but it may help with raising more awareness and funds. 

The 'Chariots of Fire' event to raise funds for the DCD Heart Transplant Programme.

Raising awareness of Organ Donation and Transplant to John Henry Newman Sixth Form

Papworth Transplant Annual Patients' Event

John Henry Newman's Christmas Concert, Fundraiser and Book Event for Papworth Hospital Charity

All in all it's been a brilliant year for 'Life Is For The Living' and with profits from book sales and book events we've been able to raise over £7000 plus. The book profits to date have been shared between Papworth Hospital Charity, PHAUK, Papworth PH Matters Support Group and Papworth Transplant Social and Support Group. Book event proceeds have been donated to the Papworth Transplant Social and Support Group and Papworth Hospital Charity for the Balloon Pulmonary Angioplasty Project (Pulmonary Hypertension) and the DCD Heart Transplant Project (Transplant). 

I would like to say a massive thanks to every single one of you who have purchased and read my book and have helped spread the word about it or supported any of the book events, which has enabled this to happen. 

Here's to another successful year of raising more awareness! 

Click here to purchase book

Christmas Concert

I'm thrilled that this week my book sales surpassed a thousand copies. It means that if each one of those books have been read, then there will be a thousand more people out there who may be more aware about Organ Donation and Pulmonary Hypertension. I'm also pleased as a writer that people are still buying both hard copies and the Kindle version and the book seems to keep on going from strength to strength. A big plus is that it has helped raise funds for charities and support groups close to my heart too.  

Over the past few years Rob and I have been visiting the girls' old secondary school - The John Henry Newman School in Stevenage - to speak to the sixth form about organ donation and help them understand more about the issues surrounding it. This year the headteacher had read my book in the summer and invited us to speak again and also offered to support Papworth Hospital Charity by holding a non uniform day and a collection and chance to sell books at their annual Christmas Concert. We were delighted and excited about this. 

The events managed to raise a grand total of £3600, plus we managed to sell plenty of books raising another £275 to add to the total. Rob and Sarah attended the concert along with Charlotte from Papworth Hospital Charity and it was an amazing evening. People were so kind and generous and I would like to thank everyone involved in organising everything and supporting us. I was very disappointed that I couldn't attend, but my health problems of the last few months are still ongoing.

I would also like to thank those of you who sent donations to Papworth Hospital Charity in lieu of Christmas cards. I've been really touched by your thoughtfulness and generosity.  Rob was able to pass these on to the charity at the concert event and the £80 donations received brought our total fundraising for Papworth Hospital Charity this Christmas to £3995. This support has really given me a huge boost after what has been a very difficult few months and has meant December has been a big high to end the year on. 

If you are looking for a Christmas present or that extra stocking filler then there's still plenty of time to purchase a copy of 'Life is for the Living' on Amazon or maybe you are settling down for the Christmas holidays and just fancy a good read to download. The Amazon link is below and remember all funds are for Transplant and PH charities and support groups. 

Purchase Life is for the Living

A few comments re the book: 

'Just finished your book, so touching. Your paragraphs on the 'letter' from your donor's family had me in tears...thank you for your wonderful words...' R 

'It's a compelling read - the inside personal story not just of the medical issues, but of how you, Rob and the family felt about what was happening to you all. And you tell it beautifully. Inspiring is an overused adjective nowadays, especially in health matters. But yours is a truly inspiring book.' LM 

A massive thank you to everyone who has supported 'Life is for the Living' this last year and helped both raise awareness and funds for important causes. 

A Positive Day

It's been a really good day today as I felt well enough to visit the John Henry Newman School in Stevenage, where Rob and I gave a talk to the sixth form on organ donation, transplant, my book 'Life is for the Living' and the important work of Papworth Hospital and Papworth Hospital Charity. 

The school has chosen to support us in raising awareness of Pulmonary Hypertension and organ donation and help us raise funds for Papworth Hospital Charity during this autum. They are holding several events over the next few months, including a non-school uniform day, a book signing evening and a Christmas concert, which is fantastic. 

It's quite poignant that our first event today was at the beginning of November as November is the month when the campaign for raising awareness of Pulmonary Hypertension is launched - the rare and incurable disease I had that led me to having a heart and double lung transplant. Pulmonary Hypertension is high blood pressure in the blood vessels in the lungs, eventually causing damage to both the lungs and the heart. There can be different causes such as congenital heart disease, autoimmune disorders and, as in my particular case, it can suddenly just start for no apparent reason and is then known as Pulmonary Arterial Hypertension. 

Having been under the weather and still waiting on more tests, today had been another day that I'd been looking forward to and hoping I could still manage - one of those motivators to try and do something positive in between a time of what feels some uncertainty yet. It was a wonderful opportunity to speak to an audience of circa two hundred people about these important issues that are so close to our hearts. There was lots of interest, lots of leaflets given out and lots of discussion amongst the sixth form on organ donation. Our main message on organ donation was the importance of having that discussion with your family, so everyone knows what your wishes are. 

All in all a very positive day for us and the start of more activities and exciting things to look forward to in these next months leading up to Christmas. 

Chariots of Fire

It's been a busy old week with my book 'Life is for the Living', as we've been working alongside Papworth Hospital Hospital Charity trying to raise funds at a couple of events held by the hospital. First up was the Annual Members Meeting held in the Papworth Village Hall, where we enjoyed talks on the latest developments at the hospital and the annual staff awards. 

Then on Sunday we were pleased to volunteer with Papworth Hospital Charity and help sell copies of 'Life is for the Living' on their charity stall in the marquee at the 'Chariots of Fire' event in Cambridge. Rob and I enjoyed a pleasant morning working alongside other volunteers and staff from the hospital.

Chariots of Fire is one of Cambridge's largest annual charity events. Teams of six each run a 1.7 mile course in relay format. The event is organised and managed by Hewitsons Charitable Trust. Each year the trust picks a charity to benefit from the event and this year Papworth Hospital Charity was chosen. 

It was an early start and quite chilly when we arrived at 7.20am, but a bacon butty and plenty of hot coffee soon warmed us. After breakfast, the runners and their supporters started arriving and everywhere busied up. There were quite a few Papworth teams taking part, including my transplant team and a team of Papworth transplant patients. We were able to say hello and chat with other patients, staff and their families and everyone was raring to go and hoping to raise lots of funds for Papworth Hospital Charity. 

The charity had pledged that all the funds raised would go towards supporting Papworth's DCD Heart Transplant Programme. The DCD heart transplant procedure is set to increase the number of lives saved among people waiting for heart transplant. Usually donors are brain stem dead but with this new DCD transplant procedure developed at Papworth in May 2015, hearts can be used from donors after a cardiac death. The procedure and equipment required to undertake this type of transplant is being funded presently by charitable funds and as it's been such a success so far in increasing the number of potential donors and heart transplants taking place. It's crucial to develop the programme and raise as much funding as possible to continue developing the programme, especially as there is still such a shortage of organ donors.  The DCD heart transplant procedure is being rolled out and undertaken by other heart and lung transplant centres in the UK and Papworth currently is a world leader in this field.

There's still time to donate to this most important cause, which is helping to address the shortage of hearts available for transplant and save lives.

Papworth Hospital charity - Chariots of Fire Event 2016

Here are some pictures of the organ care system equipment required to undertake this life saving procedure together with some of the team who've worked on developing it.

From One Weekend to the Next

It's been a few weeks since my last post, so here's a catch up on all that's been happening over the last week or two. Life has been a little hectic with both things we've had planned and things we didn't have planned! 

A few weeks ago we had a fabulous weekend in the Lake District and visiting family in Lancashire.  One of the things I've been desperate to see is the bluebells at Rannerdale. Obviously they can only be seen for a certain few weeks in the year, while the flowers are in bloom and this year our visit was perfectly timed. It's a unique setting where English bluebells flourish on an open fell that runs down to the lake, Crummock Water. We spent most of the day in the vicinity, visiting Buttermere and driving past a variety of other Lakes on the way - Windermere, Rydal Water, Grassmere, Thirlmere, Derwent Water and Bassenthwaite - and then on through the spectacular scenery of the Forest of Borrowdale and the Honister Pass. All pretty amazing and breathtaking and always, however many times I've done this, an unforgettable experience.

Check out my garden blog for more information on Rannerdale. 

The Bluebells at Rannerdale

Honister pass taken from the car

The beautiful Buttermere

Rannerdale

Ted and me enjoying the scenery

Another day we drove through the Western Lakes, via Coniston Water, Broughton-in-Furness and the Duddon Valley and spent time walking on the beach at Silecroft and had a picnic. It was great to be outdoors all day, walking amongst views of stunning scenery and just enjoying the fresh air. Once we were back home I'd kept saying how well I feel and how it's the best I've felt in ages. 

Silecroft Beach 

Ted and me again having a little rest! 

Idling around on the west side of Coniston Water

Magnificent views

A few days later I popped up to my hospital, Papworth, to drop off a box of books so that they can stock and sell 'Life is for the Living' in the Papworth Hospital Charity's gift shop. I'm delighted at this and hope it helps raise some much needed funds. The charity is raising funds to help with the funding of organ care systems, which help facilitate the DCD donor heart programme. This programme has seriously helped to increase the number of much needed heart transplants being undertaken and is not yet fully funded by the NHS. Papworth is leading the way on this programme, being the hospital which introduced this programme in the UK and are continuing to undertake more successful transplants by this method. The programme is being rolled out to other transplant centres and Harefield Hospital are also successfully undertaking the programme too. 

I've also been up at the hospital a couple of times, as I'm in involved with the Transplant Patients' Representative Group and we've been busy planning our next support and social meeting, which is on Saturday 25th June. (Contact me for more details should you be a Papworth transplant patient and wish to attend) We will be having a talk on 'Life as a carer' and our usual buffet lunch and raffle. Also, we've been working on our new notice board in clinic, there's still more to come, so keep a look out if you happen to be visiting transplant clinic. 

Boxes ready to go to Papworth Hospital Charity Shop

Then followed the not so planned weekend, spent in hospital. We were planning a fairly quiet weekend and got up last Saturday morning quite early, as we thought we'd go out early, beat the crowds and buy some bedding plants for the garden. I hadn't been up long when I thought I felt a bit odd, then I felt ok so just carried on with breakfast. 

When you've had a transplant, you do find yourself quite tuned in to what your body is doing, especially when you have to do daily observations like weight, temperature and lung function. I try not to be obsessed, but I do find myself wondering if something is going on at every twitch, twang or ache or pain - it's like a knee jerk reaction I think,  to all the traumas of the last few years, the fact we have it drilled into us by our medical teams and the uncertainty that still lingers there somewhere. Usually in the same split second I can just dismiss it, which I did in this case.  About half an hour later though, I had the same funny feeling again and then I found myself with Rob standing over me on the kitchen floor. 

A faint is a worry for anyone, sometimes it's nothing serious, sometimes it is, but when you have transplanted heart and lungs then you can't dismiss it and wait and see. The nurse at Papworth advised to dial 999, and when we did the operator wanted to stay on the line so they could talk Rob through CPR if needed - funnily enough he'd signed up for and had CPR training at work that week. I'm not sure I can say he was stood there hoping to give it a try, but at least he had some confidence. Then the ambulance arrived. Of course, Ted was all over-excited at all the goings on and the paramedics with their bags, so Rob had to put him out in the garden while they did their initial checks. 

I had to be taken into the local hospital and after going through the resus unit and two acute assessment wards, seen by quite a few doctors - cardiologists, neurologists etc - I went on the cardiac ward to have my heart monitored for the night. They were all so fantastic with me, couldn't do too much and ran every test they could to rule things out. In the end we couldn't get to the bottom of it and on Sunday evening I was allowed home with a few follow up tests still to be done. I'm also going for a full MOT at Papworth in the next few days just to be on the safe side.

It was good to be back home and very uplifting when I received a few cards and letters in the post thanking us for donations to Papworth Hospital Charity and Papworth PH Matters Support Group. The donations were from the proceeds of my book 'Life is for the Living'. I just want to thank everyone who has purchased it, reviewed it and help spread the word about it, as it's thanks to you that I've been able to give donations to these causes that are dear to my heart. 

There's been no more blips since, but I've been mainly resting and using it all as a good excuse to read a few books and here we are again about to start a new weekend. I'm feeling back to myself again - I think - I don't know whether I should dare to say that as the last time I said I felt good...

I know this has been a long one, so if you're still reading - here's to a good weekend for everyone, make the most of the good days and enjoy them.

Here's a few pics of the cards and letters - I just wanted to share as it's also thanks to all of you for supporting my book.

Book Launch and Thank You...

Since I released my memoir 'Life is for the Living' in time for Valentine's Day a few weeks ago, my feet have hardly touched the ground!

It was a huge relief to press the 'publish' button at long last after months of writing and editing, but with that came the nerves and apprehension a little too. This is my very first book that I've written and self-published and the whole process is completely new to me and still a learning curve. I had said to my husband, 'Do you think anyone will really want to read this?' He'd replied, 'Well it doesn't really matter, as it's an achievement for you anyway and has been both a learning and therapeutic process for you.' I was happy with that, but thought it might be good if I could sell at least a hundred copies, as after all it is about raising awareness of causes dear to my heart and also hopefully raising money from the proceeds for charity. 

But it's been a totally overwhelming response to date, I reached my milestone of a hundred book sales surprisingly after the first week or so following it's release and then I had a 'Book Launch' celebration, again to help promote the causes of Pulmonary Hypertension and Organ Donation and I actually sold over another hundred books - in fact I ran out, which I couldn't quite believe.

We had a raffle at the book launch event to help raise funds for a transplant support group that a group of us are setting up at my hospital, Papworth. Our group was given two very generous donations at the event, so with the raffle proceeds as well, we now have enough funding for our room hire costs, equipment and enough to keep us up and running for a while. 

Besides this, the proceeds from the book sales amounted to £750 because people were so generous and many donated extra to the cost of the book and I was also given another very kind donation to add to this, so we ended up with £1000 to be shared - as explained in the book - between the PHAUK, Papworth PH Matters Support Group, Papworth Hospital Charity and Papworth Transplant Patients Representative Group. Rob and I were just truly overwhelmed at everyone's generosity, kindness and good wishes. I will be distributing the funds this week when I visit Papworth and sending a cheque to the PHAUK. I can't say thank you enough to everyone that came and supported us. 

Since then, Rob and I have also been overwhelmed with positive messages and emails about the book, again I can't thank you all enough for your encouraging words, feedback and support. It's difficult to relay all the comments on here, but here are a few just to give you a flavour, especially if you're still thinking about whether you might like to read it: 

'It is such a good and gripping read that it should benefit the PH world - but also be a great read for all different people of all walks of life.' B

'It is a thoroughly inspiring piece of literature'. S

'Oh goodness tears before I even got onto your story. It is brilliant! So well written, I'm having trouble putting it down..' K

'I can relate so much of what you wrote from your love of Earl Grey tea to the hallucinations of intensive care...' C

'It's a fantastic read and you should feel very proud of it  ... I have made a donation to Papworth in lieu of the book'. M

'What a powerful story...' M

'Thank you for putting into words EXACTLY how I felt both pre and post diagnosis of IPAH. The feelings of despair, the guilt, the unknown, everything... M

'Only half way through but going through every emotion ... a very human book that resonates on different levels... you know what I'm doing over the weekend, reading!' S

I want to thank everyone who has given me some lovely reviews on Amazon too. The reviews on Amazon can help boost sales, as if there are over twenty reviews, Amazon will start to advertise the book. This can help reach out to new audiences and raise more awareness of both Pulmonary Hypertension and Organ Donation. The more sales, the more money accumulates to donate to PHAUK and Papworth Hospital Charity and both the PH and Transplant support groups at Papworth. So it's well worth taking time to write a review if you would like to support any of these causes. 

'Life is for the Living' is available on Amazon, both in Kindle format (£3.99) and paperback (£8.99), the link is below. 

Purchase Book - Amazon Link

I also hadn't anticipated the need for 'signed' copies and have now set up a PayPal service should you wish to purchase a signed book, these are £10.99 inc standard post and packaging, please private message me via Facebook, Twitter or email (website) should you wish to do so. 

Website: Links to Facebook, Twitter, E-mail

I just want to say another massive THANK YOU for all your donations, messages and support!