Heads Together

There has been much in the press this week about the campaign 'Heads Together' spearheaded by the royals, Prince William, his wife Kate and Prince Harry. The Princes have spoken out about the mental anguish of bereavement and Kate on the feelings and anxieties faced when becoming a brand new mum, using their own personal experiences. 

There are many facets of mental health, thousands of different scenarios and concepts and many that we can relate to through our own experiences and feelings. There's been both praise and criticism about the royals speaking out, but without any doubt it's brought mental health into the spotlight and that can only be a good thing.

For me, as a patient who has been through the diagnosis of a terminal illness and survived it by eventually undergoing a life threatening heart and double lung transplant, mental and emotional well being is of paramount importance. It has been key to keeping myself physically strong and in optimum health over many years now and during the highs and lows of this transplant journey, which brings with it a whole new set of health challenges. 

When you're first facing a difficult diagnosis and ongoing health problems, it can be extremely daunting and no-one can really tell you how to cope mentally and emotionally, as we're all different in how we cope anyway, and when there are life threatening issues at stake, then the focus by the medical staff is on keeping you alive and tackling the physical issues. Often your mind and your emotions are left playing 'catch up' later after all the physical stuff has been dealt with. Patients are often left to cope on their own with the mental and emotional side of things and it can have quite an impact on their progress to be left unsupported. 

I count myself as being extremely lucky, as from the very outset of my illness, I had very solid emotional support from my close family and friends. Soon after diagnosis of Pulmonary Hypertension, I came across the PHAUK charity, which helped me find whole network of support and develop friendships with other PH sufferers. Those friendships meant I wasn't alone any more in what I was dealing with and going through. I also had support from my hospital and started going to the Papworth PH Matters Support Group, where again I made more friends and found a place where we could all help each other. 

Then 'Transplant' stepped into my life and I already had friends from the PH community who were going through similar journeys, so I wasn't ever on my own. Between us, we supported each other and found some very supportive transplant groups, which in turn extended our network of support and developed even more meaningful friendships. I also found solace in things I've always enjoyed like reading, writing, travelling, wildlife, gardening, nature, photography, exploring the outdoors and volunteering. 

One of the main reasons I started my blog and wrote my first book 'Life Is For The Living' was to help both order and express my emotions about those thoughts and feelings that beseige you when you face life changing events that you have little control over. I hoped it may help others who face similiar traumas in their life and show them that they aren't alone in what they go tnrough. I think it's so important to share our experiences so we can help each other. 

Last year we brought Ted, our cocker spaniel puppy home. Ted was a very deliberate ploy to bring some routine and stability after all the upheaval of illness and transplant. He was something for me to look after, love and nurture after everyone had been looking after me; something brand new in my life that had nothing to do with the past life I'd been forced to put behind me, my previous illness or my transplant. Ted suddenly became an integral part of my emotional and mental wellbeing, especially as when he actually arrived home I was back in hospital struggling with my first serious post transplant crisis. My latest book is all about my first year with Ted after arriving back home from hospital. It's a story of learning to grow and love together - a story for dog and animal lovers, but also a story for those interested in the importance of emotional and mental wellbeing when facing physical and debiliating health difficulties.  

Unfortunately, I haven't quite finished the first draft as I'd planned due to more recent health setbacks, but I'm well on my way and it won't be too long before that important first step is reached and then the serious business of editing and redrafting will begin. My writing spurs me on and I shall keep you posted how things are going. Watch this space! 

All in all it's been a great week for raising awareness of the importance of sharing experiences for emotional and mental health. 

Feedback from Amazon readers on 'Life Is For The Living'

'So moving, honest and inspirational. The reader lives the challenging journey of Kathryn's deterioration, diagnosis and dream coming true with the transplant. The impact on Kathryn personally, her career and her amazing family are frankly shared , as well as her husband Rob' s often humourous and ironic reflections about the situations they heroically face together. Kathryn's wonderful style and amazing tale engage the reader's heart and mind ...so be prepared not to put this book down!'

'An emotional read, I could not put it down. Like other readers, I laughed, I cried and felt all emotions in between. Most importantly I am determined to always look forward and live life to the full.'

                                                                  Purchase Book - All Proceeds To Charity

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.

My new website

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.

Life is for the Living Book - Paperback Copy

Life is for the Living Kindle Version

USA Paperback

USA Kindle Link

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: urban-echoes.co.uk/ carrowmena.co.uk)

Looking to the Year Ahead...

For me, autumn has always been a little like New Year, a time for a fresh start. I think it's after being in the teaching profession and working in school and the new school year starting in September. Autumn was always a time to reflect and plan for the year ahead. Now autumn will always be a very significant time in my life as it's the season I received my transplant and my second chance at life. Autumn, therefore, feels very poignant as a time to think ahead and into the next year.

I remember thinking how am I ever going to have a better year than the first year after my transplant. It was such an amazing year being able to do so many things that I'd believed I'd never do again and have so many wonderful new opportunities having been given my life back. Now I've just passed the two year anniversary of my transplant and I'm thinking the same yet again and wondering what my third year post transplant is going to bring. So I'm hoping and planning for it to be another good one. 

Health is always going to be one of my highest priorities in having another good year. I can only try my best to remain as healthy as possible with exercise and diet and following the advice given by my transplant team, who continue to look after me well. Autumn is flu jab time, so I had mine last week - it's another preventative measure in the hope of keeping my lovely new lungs working well. At the moment they work beautifully and I'm trying hard to keep it that way. Sometimes I feel like it's a game of dodging in and out amongst all the coughs, colds and sneezes. It always surprises me how many people think it's ok to cough and splutter all over others without a second thought - or maybe it's just me being more aware or even paranoid!

Another priority will always be campaigning to raise awareness of Pulmonary Hypertension and Organ Donation and I've been planning for the year ahead already on this front. For the last year or so, as many of you already know, I've been writing a memoir all about my journey with Pulmonary Hypertension and through transplant. I'm hoping it will give readers a valuable insight into what it's like to be diagnosed with and live with a life threatening, rare and terminal condition, the difficulties coping with a long wait for a transplant, as well as undergoing a major transplant operation and the life changing differences a transplant can make. I hope it will be of interest to anyone affected by either Pulmonary Hypertension or transplant or both, as well as anyone suffering with any type of life threatening or chronic illness. 

Hopefully it may appeal to a more general audience too, as it is about surviving against all the odds and a miracle happening! I'm planning my book launch for early in the new year and hopefully this will help renew and refresh my campaign to raise awareness and through my book I may be able to reach new audiences. I hope to raise some funds for PH genetic research and transplant support at Papworth hospital if anyone buys it! For me, it's a big project and as well as raising awareness for PH and organ donation, I'm personally very excited about it and looking forward to having my own book published and giving my campaign to raise awareness a new lease of life.

Through my hospital, I've also become involved with several patient focus and advisory groups over the last year, which has been interesting and is leading to more and more interesting projects such as  working with researchers and university students and of course work that is related to organ donation and transplant. I'm also part of the Transplant Patients Representative Group at Papworth and we are currently working with the Transplant Team on some new ideas.

One of the problems many patients face after overcoming many years of illness is finding a role and purpose in life once more and that takes time and I believe it's part of the recovery process. I'm hoping all these new avenues will develop and continue to keep me busy - they certainly have until now. I'm sure there will be unexpected surprises too -  I hope so and I'm excited to see what life brings next! 

Thanks for taking your time to read and to all my regular readers,

Kath x

PS. I've been working on this blog and my other social media sites in readiness for my book launch early next year.

Most importantly, I've changed my blog URL link for this blog - 'Life is for the Living' - to: 

 kathryngrahamwriter.blogspot.co.uk

So if you have any links to my blog they will need to be changed to the new link if you'd like to continue following. 

I have a new author Facebook page so you can track my book progress and see where I'm up to in my writing process. It'd be fantastic if you would click on the page below and 'like' and 'share'.

Life is for the Living 

New Challenges - Writing a Book!

I'm nearly 23 months post transplant, I can't believe where the time has gone, but that's because having my transplant has changed my life so much and allowed me to do so many things and be so busy. It's given me a chance to try new things and have new experiences as well as do things I used to do, but thought I wouldn't ever do again.

Article in Emphasis magazine

One thing I've always dreamed of doing is writing a book. I've always wanted to do this ever since I was little, as I love reading books and I love writing. I'm one of those people who cannot physically walk past a book shop without having to go inside and come out with a handful of books. I've more books loaded on my kindle than I can manage to read and I love real books too, so have bookshelves full of books everywhere around the house. There is something special about holding a book in your hand and the thought of holding a book I've written myself is a dream I want to make come true. 

I decided after my transplant to get myself writing more and I enrolled on a writing course. My course started with writing articles for magazines and for a while I worked on writing articles about my Pulmonary Hypertension and Organ Donation and Transplant to help raise awareness. It gave a purpose to my writing and they are subjects I'm passionate about. I was delighted when I had some success in getting published. It gave me some personal achievement, as after having been ill for so long and being forced to give up my career I'd lost some sense of purpose. It gave me some sense of satisfaction to see my own writing in print and published in magazines. I wrote articles for varied magazines with different audiences. 

Article in Cumbria magazine

After acceptance of terminal illness and facing an uncertain future and then being given your life back, part of recovery through all these stages is finding some purpose in life once again. You suddenly have your future back when you thought you might not have one.Then you have to find what you want to do with that new future. It's similar in those stages of being chronically ill, part of coping is finding new interests for yourself when your unable to do things you could do before. Some people strive to get back to work, to a job or career they've always done or they're forced to start anew and find fresh challenges. 

I used to be a primary teacher and decided that although I loved my career, I'd left it behind years ago and it's time for something diffferent. I decided to write instead. After completing those first few assignments of my writing course, my future assignments were taking me in new directions to write about a variety of topics and although I still want to do this, I couldn't get myself motivated about them, because I still had an overwhelming need to keep writing about my transplant and write a book.

Article in Woman's Weekly Magazine

In the end I decided to concentrate on writing my first book and the saying goes, 'write about what you know'. I started writing about being diagnosed with PH and then being told I need a transplant, then all the waiting and finally getting my transplant. All those thoughts and feelings that I went through. There I had suddenly arrived at that book I've always wanted to write - it turned out to be a memoir. All those years of saying one day I'll write a book, I didn't ever dream it would be about these topics! 

It's taken a year so far and I'm delighted I finished my first manuscript recently. It still needs work - some editing and redrafting and then there's work to be done on book design and working my way through self-publishing. I'm therefore still a short while off to completion, but it's given me a new purpose. It's a huge learning curve as I tackle each step, but that's what is wonderful about having a transplant - the new opportunities and choices that you suddenly have with your new life. That chance to do anything you wish and take on new challenges. 

When I was sick, I still used to look for challenges and opportunities - things I still could do - that's when I started writing and I set up my blog. It gave me a purpose - a chance to raise awareness about subjects I was interested in and a chance to use my photographs - photography was another interest I found while feeling poorly. The two went hand in hand and now one thing has led to another...

Because of my transplant, I'm getting closer to my dream. For me, it's been part of recovery - all that writing has been truly therapeutic. For my family, I hope it will be a momento and a catalogue of events that shows how we coped and overcame a very challenging time. In the process I hope it may help others understand some of the issues patients with long term and chronic disease face and what they have to go through, as well as raise more awareness of living with a rare disease like PH. I hope it demonstrates the huge hope and benefits that having a transplant can bring and helps raise awareness of the shortage of organ donors, as I had to wait two years for my transplant. Ultimately I just hope some good can come out of it. 

I was lucky to do a couple of press interviews recently - one paper wanted to do something on my book and although I'm not quite done, it's always great publicity for PH and organ donation, and so was a great opportunity. Another paper wanted to publicise the fact transplant operations are down in number for the first time in years compared to previous years, so again promoting more awareness for organ donation and transplant. Of course with my transplant story comes my PH story, so inevitably more awareness for that too. Here are the links below to the two press articles.

The Comet news article

The Hertfordshire Mercury

I'll keep you posted on my book writing and progress, but in the meantime what has everyone else done to help yourself through illness or recovery or just for a new challenge or fresh start? I'd love to know! 

Hospitals and Writing

It is twelve months this week since we lost our very dear friend Ann, who bravely fought a hard battle against very severe PH and sadly did not survive after her first few months post heart and lung transplant. We often talk about Ann and remember her with much fondness. She was such an inspirational character to us and still is. We are thinking of Anne's family and friends this week and know how difficult it will be for them. She will always be in our hearts and never forgotten. 

I was supposed to have my tests at transplant clinic this week, but they have been postponed for a few weeks. It worries me about whether my blood levels will be all right after all the stopping and starting of my medication over this last month, so I was almost looking forward to having my blood tests so I can be told all is nice and settled again. I feel fine at the moment though and back to normal again so I must learn not to worry I suppose and I know I am back at clinic in a few weeks time. 

We still weren't hospital free though. This week it was Mr Graham's turn as he had to have some routine checks, which he has every five years. We were back at the QE2 in Welwyn Garden City for the third time in a week and I'm pleased to say that all the tests were all fine. I think he rather enjoyed being the patient for once and getting all the fuss. It must be so wearing keep going to hospital all the time with me. He has to do all the sitting about usually, at least I'm up and down doing things or having things done, but he just has to sit about and wait and I think it must get so boring for him now after all this time. Next week we are hoping will be hospital and doctor free, we haven't had one of these weeks since May, so I'm keeping fingers crossed. 

I had some good news the other day too. I sent an article I had written to 'Cumbria' magazine and they emailed me back more or less straight away to say they would be able to publish it for me. It is going to be in their November issue - yes I'm finding out that all the magazines have to work a few months ahead of themselves.  My article is all about Cumbria being an inspiration to me to get myself better after my transplant, so I'm delighted they are going to publish it. It will be yet another audience to reach. I always think the more people we can reach with our real life stories about transplant, the better and hopefully there may be some positive impact. 

I treated myself to a new mac book recently so I've now made a good start on the book I'm writing about my transplant. Having the laptop means I can write wherever takes my fancy and get my thoughts down when they pop in my head! I always forget my ideas if I wait until later. It's going to take time, but now I've actually made those initial steps to get going with it I know I will need to finish it! That's my big project and it feels like quite a challenge. My writing course is also keeping me busy and getting me thinking of other writing ideas too. 

So after having to give up work and worrying what I might do with myself once I'd had my transplant and got better, I'm finding more than enough to keep me busy and enjoying myself with it in to the bargain!