'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

Let's Talk About Pulmonary Hypertension

November is Pulmonary Hypertension Awareness Month and this week it is Pulmonary Hypertension Awareness Week in the UK. Pulmonary Hypertension (PH) is a rare, progressive and incurable disease. It is a serious condition that causes high blood pressure in the pulmonary arteries, which can severely damage the heart and lungs. 

Unfortunately not many people have heard of it, so if you suffer from it, the lack of awareness can add to all the stress of the diagnosis and the battles you have to cope with on a daily basis. When you suffer from a rare disease like Pulmonary Hypertension, it can feel very isolating, as people don't understand about the disease and you are often misunderstood. Only circa 7000 people are affected by PH in the UK and it can affect anyone regardless of age or ethnic background. It is more common in women than men. 

Pulmonary Hypertension is a very general term to describe this disease, but it is a very complex disease and really is much more than just 'pulmonary' and 'hypertension'. Indeed, it does very much involve 'hypertension', which is high blood pressure and with Pulmonary Hypertension it is a diagnosis of high blood pressure in the blood vessels of the lungs. When I suffered from Pulmonary Hypertension I must admit I used to become quite exasperated with this tag of 'hypertension', as people continually told me all about their high blood pressure problems and the tablets they were on for it, which is a totally different problem. Simple and straightforward high blood pressure can be extremely dangerous, but it can also be safely controlled by a few tablets and lifestyle changes and isn't usually a fatal problem unless it's undetected. 

Pulmonary Hypertension, however is high blood pressure in the lungs and although it can be treated to try and stabilise a patient, it cannot be cured and it becomes progressive, damaging the blood vessels in the lungs, causing severe breathing difficulties and the heart to overwork until it begins to fail and it can become fatal. Treatments can be harsh, with difficult side effects and can include: oral heart failure tablets such as diuretics; targeted oral treatments to stabilise the high pressure in the lungs; oxygen therapy; intravenous medications and major surgeries such as operations to remove blood clots from the lungs, lung transplantation and heart and lung transplantation. 

PH patients suffer with a range of symptoms such as breathlessness, extreme fatigue, dizziness, fainting, swollen ankles and legs, plus the side effects of varying levels of medications. 

Take a look at the PHAUK website to find out more about the causes, the symptoms and the treatment of PH, as they are explained well and in depth on here.

PHAUK WEBSITE

Pulmonary Hypertension is no 'ordinary' high blood pressure, in fact when I suffered from it, my 'ordinary' blood pressure was perfectly normal. I looked perfectly normal and well a lot of the time too, as heart and lung failure isn't something that anyone can see. It's something that's happening inside you, only you know how fatigued and unwell you feel, people cannot see it. It makes it difficult for others to understand when they cannot see you are sick and it is a disease that is unheard of. That is why we need to continue raising awareness to help others to understand more about the complexities of this disease and the impact on a Pulmonary Hypertension sufferer's life. 

My own PH journey was a difficult one, with many hospital admissions and emergencies, countless tests and monitoring; many complex medications including combinations of oral medications, inhalers and complicated intravenous medication; a two year wait for, and then undergoing a heart and double lung transplant. My transplant has given me such a better quality of life, but a transplant does entail a whole range of other medications and new medical problems to cope with. My transplant was because of PH and my transplant journey is very much a part of my PH journey. 

When people say, 'You haven't PH any more - why keep going on about PH?' It's because PH has been a big part of where and who I am now. It's in my past, but has shaped my future. It's because PH is so misunderstood. It's because so many of my friends still suffer with PH. It's because we still hope for a cure for PH. 

Part of the reason I wrote my book 'Life is for the Living' was to help raise awareness of Pulmonary Hypertension - to try and show others what it is like to live with a rare disease and undergo the varied steps of treatment as the disease progresses and the impact it has on a sufferer's life. Any proceeds from my book are for the charities that helped me through my journey and continue to do so, including the PHAUK, the charity that gave me advice, support and put me in touch with other Pulmonary Hypertension sufferers at a very desperate time in my life. 

PURCHASE 'LIFE IS FOR THE LIVING'

I will always campaign to raise awareness of Pulmonary Hypertension, because once I didn't know 

anything about it. It didn't really matter to me back in those days. Why take the time to learn a little about any rare disease? Well it may just save a life - your own or someone else's or help you to understand what someone else is dealing with and going through. 

I didn't know anything about PH and its symptoms once. Early diagnosis equals better prognosis. If only I had. 

JOIN THE PHAWARE GLOBAL ASSOCIATION

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! 

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:

Purchase Book Amazon UK

Purchase Book Amazon USA

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:

PHAUK Website

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. 

Life is for the Living Facebook Page

Time for Run to the Beat Once More

I cannot quite believe it's a year since Rose ran the Run to the Beat half marathon for the phaUK, the charity that has supported our family through the many ups and downs of having a rare disease that no one understands.

It was such a relief to find this charity in those first few days of being diagnosed with a disease that I had never heard of. I remember Rob and I driving home in absolute silence and shock after I was told I had it and probably wouldn't have long to live. We had no idea what type of PH it was at that point; what treatments might be offered; what causes it. We hadn't got as far as going to one of the PH specialist centres that the country has - there are only 9 hospitals in the UK and Ireland equipped to diagnose and treat it - we didn't even know there were specialist centres at that point. 

Of course, at this stage you are practically out of your mind about where to turn or what to do or who to ask. Waiting for your next cardiology appointment for follow up tests feels like an absolute lifetime away, you cannot even begin to wait until your next appointment to try and find out more. It is totally excruciating waiting for the next test and then the other and not knowing where it is going to lead to.

Inevitably you turn to the internet and this can be a very dangerous thing to do when you are in shock, but fortunately I found the phaUK more or less straight away. They sent me numerous brochures and a folder that explained the disease - I remember frantically checking the post every day until they came. The information they sent me helped me get through those next dreadful months while I waited for a formal diagnosis and to see how far advanced my disease was. It is a very complex disease and difficult to understand and I hadn't come across anyone who knew anything about it. 

Even my cardiologist knew very little, so the information they sent me was a godsend to help me get my head around what was happening to me. The best thing of all was how they put me in touch with other patients - real people, with real experiences to share. They run a forum and a facebook forum where we can chat and help one another, because the reality is with something so rare you will definitely not be bumping into anyone who has PH in the doctor's or at work. They also run a conference most years so patients can meet up and become better informed on all the new treatments and research. We have met some of the most inspirational and incredible people through the phaUK, who have now become life long friends. 

Many babies, children and teenagers are diagnosed with this disease and the phaUK run an annual family weekend, where families get to do lots of enjoyable activities and a chance to meet other families who are going through similar experiences. The charity also supports medical research, works with our specialist centres and seeks to raise awareness of PH including amongst medical staff, who are still relatively uninformed on the disease. 

Our family will never forget this organisation that gave us so much help through my illness and still does, as well as our PH family too, who have given us both their unstinting support and friendship over the years. Rose decided she would like to try and raise more funds for phaUK through running the 'Run to the Beat' 10K 2014 run, being held at Wembley this year. 

Rose also felt it was quite a significant time to do this too, as it is nearly a year now since I had my life changing heart and double lung transplant. September will now always be quite an emotional time for our family and Rose doing her run, somehow helps to mark the event and gives us an opportunity to try and give something positive back. 

So very early Sunday morning Rob and Rose set off for Wembley, the weather was fine and not too hot, perfect for running. 

I'm delighted to say Rose completed the race in just an hour and has managed to raise over £600 so far for phaUK. Many thanks to everyone who sponsored Rose and have helped us give a little something back to this wonderful organisation.

Rose's Just Giving page:

https://www.justgiving.com/RGrahamRTTB14

For more information on the phaUK click on the link listed below my blog.