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

The 'R' Word

The 'R' word reared a few weeks ago now, when I was diagnosed as being in 'acute rejection' and just to complicate matters another diagnosis, that I had pseudomas colonising in both my lungs. It's believed that this has probably led from all the complications that followed the bout of CMV virus I had last Xmas. 

Last Xmas seems a long time ago now, well it's nearly a year this month that the CMV reared itself. The problem with a transplant patient is that with an infection or virus then a careful balance needs to be struck with the immunosupressant medication. If you are too over immunosuppressed then it's difficult to control the infection; if you become under immunosuppressed then there is the strong possibility that your body may reject the transplanted organs. 

When I had the CMV it was very severe, so my immunosuppression needed lowering to help combat it. After my CMV levels were back under control, it has since been a very delicate balance of controlling it so it would not reactivate and keeping the immunosuppression at the right level too in order to prevent rejection. I'd been having regular clinics and blood tests every month since, to keep a close eye on things, so I was lucky I happened to be at clinic and the rejection was found promptly. I shouldn't have been that shocked really that a rejection had happened, as that's one of the reasons they'd been monitoring me so closely. I thought I'd got away with it being nearly a year on from the infection.

The rejection was treated with high doses of IV methylpred steroids for three days and then with further oral steroids at reducing doses until I reached a suitable maintainance dose. To give you an idea of the increase I used to be on 5mg a day and the methylpred dose was 600mg. I also had to have another immunosuppression tablet doubled in dose. Pseudomas are a common thing in both pre and post lung transplant patients and can be without symptoms but when an infection or rejection episode occurs they can begin to colonise, start to inflame and even become infectious as they react, which is what had happened in my case and it was named as organising pneumonia. So I needed to be treated with a strong course of antibiotics too. And with all this happening, there was a fear of the CMV virus occurring again, so I had to be put back on the treatment for CMV too. All in all, a bit of a drug overload which in turn give their side effects on top of whatever else is happening, so some extra treatments for those too. Then it was a case of waiting a couple of weeks to see if the medication helped and whether the problems had been sorted, so add in a little anxiety on top and a lot of hope that this could all be turned around. 

I arrived back at clinic and had all the routine tests done and my X-rays looked like the organised pneumonia was improving, which was a big positive. However, there was no improvement in my lung function, which the consultants had expected looking at the x-ray. There was even a slight decline, so they acted swiftly again and squeezed in an emergency CT scan before going ahead with another bronchoscopy and biopsy. I was admitted back in hospital again and unfortunately the biopsy came back with the disappointing result that another type of 'rejection' was now occuring. This time a rarer thing with an acute rejection, which the consultant described to me as cells localising in a stream of rejection in the airways of my lungs. So it was back to square one again - back with the routine steroids treatment again, although I've just had it and been through all that. It was another three days of the high dose methylpredisolone in hospital to zap this second rejection and home again now on high oral doses to keep up the treatment. They will reduce down a little over the next few days, but they are going to be maintained at a higher level to help my lungs recover if possible or hopefully at least help them remain where they are at. 

It's a matter of waiting to see if this does the trick. There will be more biopsy results to come yet on the organised pneumonia front and discussion on the CT results amongst the team and I'm back at clinic in less than two weeks for another MOT, biopsy and bronchoscopy to see where we are at. I'm truly hoping and positive we can either turn this around at this point or hold things where they are at least. I'm also trying to be ready and prepared for whatever else may happen. 

In the meantime we have lots of very positive things happening too and this keeps me motivated to grab life and every moment it offers. It is Rose's graduation ceremony on Thursday. We are working on a plan A, plan B and plan C on enabling me to either attend or at least be part of it all somehow. It will depend on how well I am, but we will find a way or a compromise that will work and it's something to really look forward to. 

Rob also attended the Papworth Annual Patients' Event while I was in hospital and did a talk about what it's like to be a carer. Carers are often overlooked and they play such a vital role in all that we go through. I think it was a moving speech from what I've heard and I'm proud of him. He also did what was supposed to be my speech about our Transplant Patients' Representative Group that I chair and about the Transplant Support Group that our group have set up and got underway this year at Papworth. I was also supposed to be signing and selling my books there in aid of the support group and he successfully managed to sell quite a good few books for us too. It helped after the Director of Transplant Services and my transplant surgeon gave my book a big plug in his video. He's a person I'm forever grateful to for saving my life, but he continually supports us patients through our journeys, together with his marvellous team. 

After all that, Rob was back by my bedside just in time for my biopsy results. All in all, he's been a star and a rock not only supporting me, but ensuring all the comittments I'd taken on were organised and worked smoothly without me. I can't thank him enough, but I know the causes are as dear to him as they are to me. 

We've more activities planned with the John Henry Newman School in Stevenage and hope that these can still go ahead, as we hope to raise funds for the Papworth Hospital Charity, who are being very supportive and helping us with this. I'm looking forward to the Christmas concert there in December, where we will also be signing and selling books and giving talks with Papworth Hospital Charity about their work and raising awareness about Pulmonary Hypertension and organ donation through my book. The Papworth Hospital Charity are also supporting 'Life is for the Living' on their new and updated website, which is great news for us to help raise awareness and funds. 

There is also our Christmas Transplant Support Group meeting on the 26th November, which is all organised with books on sale there again. If you are a Papworth patient, please let me know if you'd like to come. The Papworth Ely Cathedral carol service is on December 17th, where the charity will have a stall with 'Life is for the Living' on sale too. The Papworth PH group have their Christmas party on Saturday, 12th November. I can't make this one as it clashes with returning from Rose's graduation, but they will have my book on sale there too, helping to raise much needed funds for their very special group. 

If you're going to any of these lovely events and fancy buying a copy of the book or picking up a copy or two for a Christmas pressie then there's your chance and you will be helping us to raise more awareness and funds for fantastic causes. Thanks to everyone who has already purchased it, we are hoping to pass selling a thousand copies by Christmas! 

It's also November and a busy month for promoting awareness of PH - watch out for another blog post soon about all this coming up next... there's a lot happening! 

We also have our lovely friends, Bernice and Scott's wedding evening reception next weekend. Now this is a truly special wedding, as like myself, Bernice received her gift of new life and transplant three years ago. We shared our journeys together and she's gone on to have the most wonderful new life and is living her dreams. Her journey has been an amazing one to watch and it's all thanks to our donors and their families that we can celebrate these special moments. I'm so looking forward to it and meeting up with everyone.

And then there is Sarah's Baby Shower party and Christmas... so there isn't really much time for dwelling on 'what ifs',  just so much to enjoy and be busy with and for living in the moment. The rest will unfold and slot in with whatever we are doing. We will just have to squeeze it in and whatever happens will fit in with us somehow. 

Thanks for reading if you made it this far and haven't fallen asleep, I know it was a long one with so much happening! 

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. 

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. 

 

Where have the years gone?

I remember packing the car up, stuffed full of cases, bedding, duvets, pillows, pots, pans...and all the rest. Taking my daughter Rose for her first year at University. Years of studying ahead. I couldn't really think beyond the four years she would be there, just hoped I'd see the day when it came. 

At the time I'd been waiting for a year on the transplant list and had been determined to travel down to Bournemouth so I could see where Rose would be living and where she would be studying. I thought I'd at least have a picture in my head and photos to remind me, should I not be fit enough to manage to visit again. 

I wanted to help her move in her halls of residence while I could still be mum. In truth I managed to help empty a few cases in between resting on her bed, while she and Rob lugged all her stuff up and down in lifts. I felt a little helpless as other parents where all carrying bags and boxes piled high while I was empty handed, but at least I'd been well enough to achieve what I'd wanted. Just to see and know where she'd be, see her settled in. 

We had to fit my wheelchair in the car somehow, plus a box load of boxes of bottles and phials for my IV meds. We had a lot of ups and downs with my health during that first year, but we also enjoyed many special moments in Dorset as we visited Rose. Fun times on the beach, exploring new places and making new memories. 

Rose returned for her second year and moved in a house this time, rather than the halls of residence, again. I just wanted to see where she would be living, help her move in her new home once again. I felt lucky to do this. I remember forgetting the spare pump for my medication when we'd driven half way there and we had to turn back. I knew I was deteriorating. She'd only been there two weeks and on her first official Monday of term, I had my transplant call. I couldn't see her before I went to theatre, which was hard and difficult for both of us. 

Then life changed, I recovered and improved, Rose spent her third year back home and undertaking a work placement, which gave us so much time together. When her final year arrived I was able to help move her in properly, do things as anyone else would. And now that year's ended, Rose has completed her degree. So much has happened in those four years, so many life changing things, so many new memories made. 

This weekend we visited Dorset again, one last moment with Rose there, before she left for good. Some more lovely memories as we walked miles and miles together, made new plans, walked Ted our puppy, his first visit to Dorset. 

It's been a wonderful thing to see and be part of, another wonderful milestone, another one of those firsts and a milestone for Rose too. I'd always dreamed and hoped I would see this moment and now she is back home again, university degree finished, waiting for results and starting a new future. 

It is thanks to organ donation. It'is thanks to modern science and a fabulous skilled transplant team. It is thanks to my donor's family and above all to my donor. 

In Honour of Our Donors

On the 7th April, there was an unveiling and dedication ceremony for the Donor Family Network 'Gift of Life' memorial at the National Arboretum, Alrewas, near Lichfield. The memorial is to commemorate the lives of organ and tissues donors and acknowledge and celebrate the significance of what they have given in saving and transforming the lives of others. The most precious and wonderful gift that anyone could ever give. The ceremony was attended by the Duke of Gloucester, families of donors and transplant recipients and their families. 

The Donor Family Network is a leading donor family charity in the transplant community and aims to raise awareness of organ donation and provide support for donor families. 

As a transplant recipient I try to honour my donor every day in some way -  they are always in my thoughts as well as their family. I'm pretty certain most transplant recipients feel that way too. To have a national memorial for our donors is very important to us, as it signifies to others the miracle of leaving such a legacy and it gives us a place to visit and pay our respects to those that have both transformed and saved our lives. 

To have our donors publicly acknowledged to the world means so much to us recipients, as well as to their families. A national memorial is a huge statement highlighting the importance of organ donation to everyone. Personally, I cannot wait to go and see it and will definitely be visiting the arboretum this summer and hopefully with some other members of my 'transplant' family. 

I wrote my first book in honour of my donor and to raise awareness of the importance of organ donation. It explains what it feels like to be living on the transplant list. I lived on the list for just over two years and it was an extremely difficult time when I knew that three people die each day on the organ donor register. There are still circa six thousand five hundred people waiting for a transplant and still three people die each day waiting for a transplant. That is why our donors and their families are so special to us. 

Extracts about living on the transplant list from 'Life is for the Living':

'We are ...treading warily through the sand, avoiding puddles left by the sea. Some of them are deep. We don't want to get our feet wet or sink...we are living on a list. The first day of living on a list and we are stepping cautiously.'

'I know I'm lucky to have survived this first year on the transplant list...Three people a day are still dying waiting for a transplant...One thousand and ninety five people won't have survived this year while I've been waiting...'

Amazon link to purchase 'Life is for the Living'

Below are links to news on the 'Gift of Life' memorial and the Donor Family Network website. 

NHSBT news release

The Donor Family Network

Photos: Donor Family Network 

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!