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

'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. 

September

September has always been about new beginnings for me. I think it's the school year thing, developed from long, long ago during my own school years, built upon when my children went through their schooling and when I chose a career in teaching for many years. The excitement of a brand new start; the excitement of achieving and learning new things; the anticipation of how the year may turn out - the successes and failures to come and how the future might be shaped by them.

I can't help but think back to those years of teaching. Preparing during the summer break in readiness for a new class. The excitement of the first day back, hearing the excited chatter of the children in the playground waiting to start in their new class. A fresh start for us all. 

Then September has always been a prominent time since my illness - September was the month I was referred to Papworth Hospital; the month I found out I was live on the transplant waiting list and the month I finally received my transplant, so September has well and truly and literally become my month of new beginnings.

It's been quite poignant for me, therefore, that September is the month that Organ Donation Week is held by NHSBT and this year's campaign theme has been 'Turn an end into a beginning', which truly resonates for me. I've always believed that an end to something is a new beginning to something else. New beginnings is a strong theme which runs through my book 'Life is for the Living', deliberately so, as I believe organ donation is all about new beginnings.

Purchase 'Life is for the Living' on Amazon

I always hoped and believed that some kind stranger somewhere would give me another new beginning to what was looking like my very end. I always believed it would happen and I would be able to make that brand new start and pave myself a new way in life. 

I hope Organ Donation Week has been a successful week and that many more have signed up to the organ donor register. Three people still die each day while waiting for a transplant. That figure doesn't seem to ever change although the majority of people say they believe in organ donation, yet only about a third of the UK population have signed up. One of the biggest hurdles is family consent as many families are unaware of what their loved ones wishes are. It is so important to simply have a discussion with your loved ones about organ donation. An organ donation is more likely to go ahead if a potential donor's loved ones know their wishes. 

It is great we have a special week for organ donation, but in reality we need to keep on working hard to raise awareness about the benefits of organ donation the whole year round. I know only too well what a new beginning an organ donation can bring, how it transforms a life and the lives of the recipient's family and friends. I will be forever in debt to my donor and their family for my new beginning and forever grateful. 

This September has started off sunny and warm and the weather is turning hotter and hotter this week. The weather is often beautiful and sunny in September  somehow like a signal for brighter and better things to come in the following year. 

Here's to September and new beginnings and wishing everyone who is patiently waiting on the transplant list their very own new beginning very soon. 

This week's photos were taken in Mersea Island, Essex

Summer Snippets

It's been a little while since I posted, mainly because I've been having some rest, recuperation and time out enjoying the garden and sunshine after a little health blip over the last month or two. As always I'm being very carefully looked after by my wonderful transplant team and it brings home how lucky we are to have our NHS and the specialist care it provides for us.  

Ted as usual has helped me keep my fitness up. I'm lucky our garden backs on to the park so it's been easy to take him on his walks knowing if I suddenly felt unwell I could soon be back home and safe. As I began to feel a bit better, we tried to find new places nearby, where we could explore for a change without travelling too far afield, and it's been totally surprising what we've discovered right on our doorstep this summer - lots of country walks we didn't even know were there. 

   

I've also been quietly busy writing a few more chapters on my next book, whilst enjoying the lovely sunshine and garden. In fact, although being unwell has forced me to stop doing some things, on a positive note it's enabled me to slow down and make a good start on my next book. It's all about finding the time to make that start with writing, so that's been a real achievement to get my new book well underway. And if I've not been writing, I've been busy catching up on my reading. I always have a never ending pile of books to read, so that's been quite nice and relaxing too. So although there's been things I haven't managed to do, there's been plenty of positive things to be getting on with. 

I've also been making plans for some other projects in autumn too - one of those is to be involved with a patient and public involvement panel at a university in Cambridge working with medical students. Yes - back in education, but in a very different way than I used to be. Every experience in life brings new skills though and it will be great to use my educational skills combined with my recent experiences as a NHS patient and hopefully put them to some good use. 

In the meantime, my current book 'Life is for the Living' is continuing to sell on Amazon and August has been a busy month. I've received quite a few encouraging messages from readers who've taken it on holiday to read - some even for a second time around. Every book sold helps towards raising awareness of Organ Donation, Pulmonary Hypertension and raising funds for charity. If you still  fancy a good holiday read or a late summer read for the garden, it's available on Amazon, both hard copy and on Kindle. (Links are on the side bar) I also had an opportunity to promote my book and the importance of organ donation on the local radio recently, which hopefully will help to raise more awareness.

Finally it's only a couple of weeks to our next Papworth Transplant Patients' Social and Support Group and we're busy making preparations. If you are a Papworth transplant patient - pre or post - then you are welcome to come along. Our meeting is on Saturday, September 3rd, 12 noon til 3pm and includes a buffet lunch, raffle and speaker. There'll be plenty of time for tea, cake and a chat too. We're hoping it's going to be another good one. 

 

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.