Saturday, 7 October 2017
It's been a while since my last blog, as life has been busy over the summer and I've deliberately been giving myself some time out from some social media while I've been adjusting to yet another 'new normal' with my health. My lungs aren't functioning as well now following all the health problems I've had over the last year and I've been concentrating hard on building myself back up so I can remain stable in readiness to face stomach fundoplication surgery this autumn. I'd been 'all set' and geared up with a date for it, but now it's been postponed due to a cold and chest infection. Hopefully the operation will go ahead soon though and help address some of the problems with my transplanted lungs.
We had building work going on over summer too, which has kept us fairly well occupied, our
conservatory being rebuilt and having a whole new makeover. Ted, our cocker spaniel, also had his fair share of health problems too and in between all my hospital stuff and building work we've been up and down to the vets all summer, until he was properly diagnosed and had surgery to remove a grass seed that had travelled through his paw and embedded itself inside his leg.
All's well that ends well and Ted is fully back to normal and it's a joy to see him running around the garden and park and playing with his friends again. We managed to escape back to the Lake District for a few lovely days in early September and although it seems to be one step forward and two steps backwards with my health at the moment, I've been been enjoying the autumn sunshine and recuperating in my new conservatory, enjoying the peace and tranquility now the builders have finally gone.
Last weekend, we celebrated my fourth transplant anniversary - September and autumn will always feel such a special and emotional time for me and my family and we are all forever grateful to my donor and their family for giving us all this extra time together. We've been able to do so much as a family since my transplant and celebrate so much together.
This last year has seen some of the hardest and ongoing struggles with my lungs and health - it's felt like there's been a whole circus going on inside my lungs at times, but somehow we've managed to keep on overcoming the problems together as a family and with the strong support of the Transplant Team and friends.
All these struggles have left me with more fragile health and poorer lung function and exercise capacity, but somehow this last year has also been the year that has managed to surpass anything I had dreamed of pre transplant and I've been able to enjoy the most precious of moments.
Before Christmas I saw both Sarah and Rose graduate and this summer I was able to see Rose complete her teacher training and this September start in her first teaching post. These are things that I didn't ever think I'd see when I first fell ill and were things that flashed up in my mind that I would miss out on, having being given only a short time left to live. Four years on, I've been able to see these things actually happening for real and with much gratitude to my donor.
And then came baby Freddie. Back when I was sick, even contemplating grandchildren was beyond a dream and felt too far ahead in the future, but this has been the year that our first grandchild was born. My health struggles somehow pale into some insignificance when I spend time with Freddie. Sarah and Freddie visit regularly and it's been wonderful to spend so much time with him, watching him change and grow over the months. Sometimes all the health issues help emphasise just how precious some moments are and what is most important in life.
It's been another exceptional year to celebrate and now I'm starting year five. I cannot quite believe where time has gone since my transplant or since my diagnosis of Pulmonary Hypertension or how life has moved on in new and unexpected directions yet again.
Tuesday, 20 June 2017
I can't remember the whole context of the conversation, but someone recently made a comment to me about Fitbits and personal fitness trackers. It was something along the lines of 'and these people who wear these wrist band things and are constantly checking on their fitness all the time...' The person wasn't so impressed with the idea of fitness trackers and disapproved of them. I found my eyes casting down towards my wrist and staring at the Fitbit I was wearing. Should I be embarassed I'm a Fitbit wearer and admiit that I'm actually quite a big fan of the fitness tracker? I'm not totally obsessed with my Fitbit, but my fitness is important to me, however limited I become and I've found my Fitbit a very useful tool to measure what I'm up to.
I bought my Fitbit at the airport a couple of years after my heart and double lung transplant, we were en route to Rome. We were about to embark on a three week trip around Europe. Rob and I enjoy visiting cities and I'd always been curious about how far we actually walk when we are exploring - I always thought it may be much further than I imagined. That was my main motivation for buying it, together with the fact I'd just returned from taking part in the British Transplant Games and keen to build up my fitness even more, was trying to aim to walk the NHS recommended 10K steps per day to help me. I thought the Fitbit would help me to track this target.
On the holiday, I found that yes, we did walk far more than I might have guessed, exploring museums, galleries, parks, shops and ambling around streets and I had a great headstart on my new 10K per day target. Way exceeding this target most days, I returned from holiday feeling fit and well and quite pleased with myself and determined to try and keep up my 10K steps using my Fitbit to track my progress.
Recently there's been research and press reports suggesting that 10K steps per day may be too many steps for some and may be dangerous to their health and fitness. Well that's just common sense surely? If you you've been unwell and recovering from an illness or an operation then it may not be sensible thing - things need to be taken more slowly. Having been chronically and terminally ill before my transplant I know that the 10K steps wouldn't ever have been achievable for me then. It was still important to walk, move around and keep as fit as possible in order to withstand the ongoing challenges of poor physical health though.
After my holiday, wanting to maintain that healthy holiday feel, I continued with my 10K steps target and using my Fitbit tracker to keep a measure of how I was doing. I tried to motivate myself with new ways to achieve it and even decided to have a dog, so I had no excuses to stop me walking every day. Before Ted, my cocker spaniel arrived though, my health took a dip and my 10K step target dwindled away while I was poorly for a few months with CMV virus and then recovering afterwards.
The Fitbit became really useful in helping me gauge how far I could manage to walk, it helped me readjust targets and aim for more as I recovered and started to get back on my feet again. It helped motivate me in recovery, as I could see a difference in how much I was walking each week and over each month.
I was lucky to find myself back to full fitness, with Ted my cocker spaniel in tow, smashing the 10K steps together and becoming the strongest I'd been for years. My lung function on my regular clinic visits had always been pretty good, at 90%, but suddenly my tests were showing 100% lung function, which was totally amazing after what had been a big setback and for someone who'd undergone a lung transplant.
Although I managed to achieve this, there were to be more trials and tribulations with my health unfortunately due to the virus that originally set me back. It reactivated and led to a period of acute rejections with pseudonoma infections. With my new lungs now damaged and working at 75% it was back to the drawing board once again. I used my Fitbit to challenge myself with new adjusted and lowered targets aiming to build myself up slowly but surely. I hadn't managed to improve on this when I caught a bad bout of flu alongside a form of infectious pneumonia.
This time recovery has been a long slow road - there had been too much strain on my lungs this time coming on top of the previous acute rejections and organising pneumonia, which my lungs are still and were at this time being treated for on top of the new problems. My lungs were completely struggling and the doctors didn't either bother to measure my lung function while I was in hospital, as I couldn't even breathe properly let alone do blows for tests. There were no steps happening, but the Fitbit was actually useful as a watch as time ticked away in the room I'd been isolated in. I was even surprised when I realised how much I'd actually been using it purely as a watch all this time.
During these periods of illness and dependance on higher doses of steroids, my sleep was poor, often interupted and I was suffering from insomnia. The Fitbit helped me gauge my sleep patterns and see that as I improved, my sleeping although not perfect was improving. Again, this was reassuring and encouraging.
A few months on and it's felt a slow progress, but using the Fitbit, I can see in black and white how far I've come. After about a month at home, I was managing around 1K steps a day and 7K steps a week, only a fraction of what I'd been used to, but it was something and a good start. I figured the more I could move, the more I could help clear my lungs of infection and help them to work again. Weeks on and I could see this improve more and more - another month and I was managing 2K to 3K steps a day, around 17K steps a week, undertaking small walks and activities over the day.
This helped me confirm in my mind that things were improving, that I was actually making some progress - sometimes it's hard to see how you are doing because of the frustration of not being able to do what you could once manage. It can feel one step forward and ten steps back on a bad day. A few months on and I'd built my lung function up to 40%, which was still very limiting with breathlessness, but I was walking again and managing to be out and about with family and friends and I was so grateful for that and encouraged and motivated by the fact that there was some improvement.
Following some further additions and tweaks in medications I was back in clinic this week to see how I'm getting on. Fortunately following a few medication changes I'd been feeling better still and able to do more and using my Fitbit data I was able to say I'd gone from only being able to do a thousand steps or so each day to now being able to do 4K steps on most days and had done 28K over the last week. I was delighted when my lung function results reflected an improvement too and showed my lung function had increased and is at 50% function now.
There is still a way to go yet back to fitness yet, my consultant has explained that it's unlikely I will be able to reach the high lung function I once had, but we are all encouraged there's a significant improvement and I'm going to carry on using my Fitbit to help me increase my walking further if I can and hopefully in turn push my lungs further and squeeze that extra bit more from them. For me, I've found that using a Fitbit has been a very positive thing.
What are your thoughts on Fitbits?
Thursday, 1 June 2017
Do you ever collect things? I have a few things I like to collect and as you can see from the pictures of my fridge and freezer, fridge magnets are one of them. They have over the years become much more than a few tacky fridge magnets stuck on a fridge door though.
A few of them are left over from when the girls were tiny and growing up - we would always have something stuck on the fridge during those times from drawings to ABCs to exam timetables and revision notes... The few remaining ones are always happy reminders of these times. A few years prior to my falling ill with Pulmonary Hypertension we began to travel more and more together as a family and I began to pick up fridge magnets wherever we went as little momentoes of our travels. Again the fridge magnets remain happy reminders of these lovely and precious times.
Then out of the blue came the illness with a very poor prognosis and a long wait for a heart and double lung transplant. Life changed dramatically. It became a fight to survive and a fight to enjoy and make the most of out every moment. During this time, as a family we tried hard to go out and about as much as we could - afternoons out, days out, holidays in the UK - whatever we could manage with my ever changing needs and hospital visits. Everything we managed felt like a big achievement and I avidly began collecting more and more fridge magnets as momemtoes that I was able to still go out and do things in these difficult circumstances. We endeavered to live life to its fullest while I could and the fridge magnets became a reminder of this, especially on down days when I was too poorly to go out.
A glimpse of the colourful fridge and all the magnets that represented so many wonderful memories we'd made together would inspire me on to keep wanting more of life, and to keep on making more precious memories. The fronts of the fridge and freezer filled up with more and more magnets, more happy memories of precious times together when time was running out. Focusing on all those things I could do, rather than all those things that I couldn't became a real priority. So much had been so cruelly taken away, but the ever growing magnets on the fridge always showed how much I could still do and how much there must still be out there to enjoy.
Life changed again with my heart and double lung transplant and the generosity of my donor and their family. I was given my second chance and suddenly free to travel the world again. We carried on making the most of those precious moments and making the most of my better health. We were constantly physically pinching ourselves every time we visited somewhere new and I didn't have to struggle any more. There were more fridge magnets added to the big collection; more memories; more reminders of how special life is.
Now I've hit problems with my transplanted lungs, as they've been hit with one thing after another recently, which has significantly reduced how they can function. They've been hit with recurrent CMV infection, acute rejection episodes, pseudomonas infections, double pneumonia, parainfluenza and silent damage by stomach acid. Their deterioration means I'm very breathless and feel weak when I try and move and walk.
I've just been back to clinic and the positive news is they have remained stable over the last four weeks since I was last checked so that is good news for now at least. I'm in the middle of more tests and trying new medications to help keep things in balance and under control. It's also highly likely I will be having some stomach surgery soon after I have met with the gastro surgeon in early July. There are a few mountains to climb yet, but it's all in the aim of keeping me stable and preventing more damage to my lungs and even giving the opportunity for things to improve if I'm really lucky.
With all this happening at the moment, we recently had to cancel a holiday we'd planned. We were supposed to be going on a cruise to the Norwegian Fjords visiting many new places and yes probably collecting more than a few more fridge magnets too. At the time of cancelling it, I was practically bedridden and so poorly that it really didn't matter and I didn't really care. I recall thinking I would be so grateful if I could just walk down the garden again. I'm managing that now and I'm so pleased and relieved I can do that and even get out and about now with help. There are times when it's not all about doing 'big' things and it's brought home to you starkly yet again, that the simplest of pleasures are the most important ones.
The fridge magnets are always a bright and optimistic reminder each day that life can still be lived to the full, whatever the circumstances - even in those of feeling unwell and with limited mobility. I just need to adapt again like I've done before. As I glimpse them each day they shout out, 'You can still go out and do things, discover new places and enjoy yourselves.' We have to do it differently though and consider what is manageable such as whether a place is wheelchair friendly and asccessible; whether it is flat to manage a short walk or has benches or seating to sit and rest on; whether there's refreshments and loos or not, whether there's higher infection risks. We have to think of timings so I can enjoy outings when I feel my best during the day, allow for tiredness and rest periods and be ready to change plans and ideas at the last minute if my health so dictates.
Under our own steam and pace I know we can still do so much and enjoy life. Since I've been well enough to go out and about again, that's what we've been trying hard to keep on doing. It is about focusing on what I can still do and not fretting and dwelling on what I can't. There's not much point on wasting any time and energy dwelling on the 'can't dos' - there really isn't time or energy for it anymore. I've already drawn up a list of places I want to visit locally, we've already enjoyed a quiet and relaxed break in the Lake District and proved to ourselves that we can get out and about now and we're making more plans to escape somewhere nice soon in between all the next round of tests and clinic visits.
I expect our fridge magnet collection to continue to grow and grow this summer. Hopefully we won't run out of space, but if we do that will be a good thing.
Friday, 12 May 2017
Having been in and out of hospital and needing to go to my Transplant Clinic even more regulary than usual lately, I couldn't let National Nurse's Day and Week go by, without giving the nurses who look after my specialist care a mention. How would I have got through the latest roller coaster of the last seven months without them? And that's not even thinking about the last seven years.
Firstly, there's the hard work of my specialist Transplant Nurses that I'm so grateful for. It's not only their hard work in looking after me on both the ward and in clinic, where they sort my medications, tests needed and test results, but the actual 'TLC' that they do it with. Those little moments when they take you to one side during a busy clinic and ask if you are doing ok when they don't have to do. The little extra touches when they can see you aren't doing so good and they whisk you in a side room and give that extra time for you that they hadn't planned for, so you can pour out your troubles and they can reassure you. It's like having an extended family.
Then there are the nurses who run the ward I regulary stay on. I know many of the nurses and they know me, as I've been a regular visitor to the ward for nearly seven years now. It's always a huge relief during a health crisis to arrive on the ward and see a familiar and friendly face smiling at me. Often I will feel anxious if I'm unwell, but my nurses will put me at ease and make me feel safe and secure. I feel assured that I will be well looked after and can relax a little more. They make it like a second home - a save haven when the rollercoaster is running too high and fast.
So it's a massive thank you to all the nursing staff, who are so dedicated and committed to make such a difference for us patients, who need life long and specialist care. Hospital is a part of our lives and our nurses make such a huge difference.
And ... a big 'shout out' to everyone in the nursing profession for everything they do for their patients to help make their lives more comfortable during difficult and frightening episodes in their lives and for helping to save lives.
Sunday, 7 May 2017
May has now been designated 'National Walking Month'. With the weather becoming fairer and warmer and the days beginning to grow longer, what better month can there be to get out there walking?
Walking is increasingly becoming a very popular and a highly recommended form of exercise. It's free and the majority of people are able to walk, whatever the varying pace and length they can manage. It's a known fact that it helps strengthen the heart and reduces the risk of heart disease, can help to keep the lungs strong and strengthen the body's muscles. It can also help burn those calories and increase the body's metabolism, therefore uplifting mood and motivation.
Walking has always been something I've enjoyed. As a child, I can always remember going out for long country walks with the dog: those 'Enid Blyton days' sort of memories, where we would walk with family and friends, picnic by rivers and lakes and paddle in streams.
As a young adult, I had my own dog - a staffie called Kizzy. She was a great excuse to be out and about in the great outdoors - and forcing me to go out and walk when I didn't always want to! Then came the children and the walking continued, as we often enjoyed walks together, especially on holiday on the coast or in the countryside. They weren't always too keen when they were teenagers, but now they're adults, they seem to have acquired my love for walking thankfully.
When I was diagnosed with Pulmonary Arterial Hypertension seven years ago, my walking had to slow down drastically, as my heart and lungs weren't functioning properly, but I still kept myself 'moving' as much as I was able. I used a walking stick often, to help me to stop and rest a moment and catch my breath. I used a wheelchair to help me stay out longer and see more in between short walks. It helped give me some respite, so I could get my energy levels back to a point that I could manage more short walks.
The illness didn't stop me walking, I just had to walk very cautiously and slowly and for short lengths. I knew though, being so seriously ill, it was so important to keep moving or even just to stand. I needed to keep as strong as I could; keep some strength in my muscles; keep myself motivated,; minimise the stress of the illness and keep my mind calm. A long wait for a heart and double lung transplant beckoned and I needed the physical and mental strength to cope with that.
Then came my heart and double lung transplant and walking become an even more important and prominent feature in my life than ever before.
During the long two year wait for my transplant, the thought of the chance to walk properly again without fear of heart failure, breathlessness and passing out became the greatest motivator during that dark, long and arduous period. The dream of taking a proper walk once again, walking some of my favourite walks, walking in the country, walking by the sea... that dream of being able to walk properly again kept me full of hope.
During all that period of illness, I realised how we all take such a simple thing like walking for granted - we don't even notice we're doing it. It's only when something precious like this is abrubtly taken away, when you realise what a gift it is. A gift that most of us don't even question or think about.
In the aftermath and trauma of my heart and double lung transplant, I had to relearn how to walk again as part of my physiotherapy. The change in my health after that saw me take those first few steps, to walking around my hospital room, then down and around hospital corridors and stairs. I set my sights on building my strength again, a main focus being I could live my dream and go for those long country walks once more.
Soon within months after my transplant I was taking those lovely long walks again, walking for miles in the countryside, by the seaside and coast and travelling the world and walking for miles exploring around cities. I would continually stop and pinch myself at the miracle of being given a second chance to be able to do this again. Being able to walk and go out independently felt such a wonderful thing - even walking around Tescos pushing a full shopping trolley felt amazing!
Then along came Ted, our beautiful cocker spaniel. I knew I needed to keep up my fitness to maintain my health post transplant. Life and health post transplant can be very difficult as well as wonderful. There is always a balance of drugs to be maintained: immunosuppression drugs to stop the body rejecting the 'foreign' transplanted organs; drugs for infection prevention as there's little immune system due to the immunosuppression; drugs to counteract the serious side effects of the drugs such as high blood pressure and kidney failure.
As I loved walking and being outdoors so much, this had become my main form of exercise and I knew having a dog would motivate me even more to venture outside and walk a few times a day. Unfortunately, after we had chosen Ted our new puppy and before we brought him home, I fell seriously ill with a virus and was hospitalised for nearly a month. In the meantime Rob brought Ted home and when I came out of hospital, he was firmly established as part of the family.
I was exhausted, fatigued and weak and unable to walk far and Ted was a small puppy only able to do short five and ten minute walks at a time at first. We learned to walk together, step by step. Me building up my fitness, Ted building his strength and muscles. Together we became stronger and walked further and further until months later Ted was managing long country walks and I was back strong and healthy again. Thanks to Ted, I felt I was healthier and stronger than I'd ever been in my life before. In optimum health. All because of walking.
Posters from 'Living Streets' (UK charity for every day walking)
Then last summer came more trials and tribulations of living on immunosuppression and trying to avoid infection. The virus I'd had at Christmas that had made me so poorly, reactivated itself and my immunosuppression needed to be lowered and adjusted to cope. I wasn't hospitalised this time, but it made me very unwell again for a few months and although I managed to keep walking each day, I was unable to manage as much as I'd been doing. But continuing the walking each day helped me keep back on track.
In autumn, as a consequence of the virus, I found out that my body was rejecting my lungs due to lowering the immunosuppression. I suffered an acute rejection episode and was hospitalised again for treatment. This treatment worked and stopped the rejection, but I was unlucky, as it was discovered another type of acute rejection was occuring in another part of my lungs and then treatment had to be given for that. I also had organising pneumonia in my lungs, which activated with the rejection problems.
My fitness suffered again and I tried to manage a short daily walk with Ted to build myself back up again. We kept on trying each day, little steps again, short walks around the park behind our home, as I tested myself and my strength. By the New Year, we were walking twice a day again, but this time I was much more breathless and although I could walk again, I needed to do it at a slower pace and needed someone with me to help manage Ted.
My consultant had advised that this breathlessness might improve if I could keep on building my fitness up. I was working really hard on walking out with Ted each day, Rob coming with us, trying hard to increase my stamina and breathing capacity. I was grateful that I'd got myself back to this level of fitness and very hopeful that I'd build myself back up and improve it. Walking every day felt key to this and helped keep my spirits up.
March and being a little more vulnerable, I picked up a simple cold. I carried on trying to move and walk to help prevent it getting into my lungs, but unfortunately that happened and I was hospitalised with pneumonia and then subsequently diagnosed with flu as well. Seven weeks on and my lungs have now taken a huge hit. There are also a few problems that have been identified from the episodes of rejection I experienced before Christmas that need sorting, which may involve future surgery.
I'm slowly making progress from being unable to get out of bed to now getting out and about once more with the help of a wheelchair for longer outings and walking stick to keep my steady while I struggle with breathing when I walk. My breathing is very poor and I'm trying to keep mobile and have a short walk each day to build up my fitness and lung function.
Walking has now become more important than ever to me at the moment. It's my daily physio session: if I can keep walking and moving, I can keep hoping that things will improve and my lungs might get better.
National Walking Month has come at a perfect time for me. It's May, a beautiful time of year and there's a whole summer ahead to try and recover.
Thursday, 4 May 2017
Being in hospital for a couple of weeks and then since being home, having to take time out to recover, I've had plenty of opportunity to catch up on my reading. I'm one of those people who cannot walk past a book shop without popping in and coming out with an empty purse and a pile of books. I've always done it. Then I'll pop on my Kindle from time to time to search out a best seller or latest book release and end up downloading a few too many books than I'd planned for. Hence, I'm never up to date with my reading and doubt I ever will be, because I buy books faster than I can ever read them. Here are a few of the books I've been reading from my book shelf over this last week or two.
I'll start with Donna Tartt's 'The Secret History'. This was a birthday gift, which I was really pleased with, as I loved her book, 'The Goldfinch', and I always had the intention of reading more of her books and just hadn't found the time to get round to it. I couldn't put this book down. Set in New England, it tells the story of a closely knit group of classics students. It is narrated through the eyes of one of the students, who reflects on a murder within the group and explores the the circumstances and the lasting effects. It has been proclaimed as a 'whydunit' rather than a 'whodunit' detective mystery and for me I'd say it's a must read.
'The Loving Husband' by Christobel Kent - I picked this one up recently, as it's a 'Sunday Times Bestseller' and a recommended 'Richard and Judy Book Club' read. It's a good one for those of you who like the current trend for psychological husband and wife thrillers like 'Apple Tree Yard' and 'Gone Girl'. It's set in the remote Fens, where Fran Hall and her husband Nathan, together with their young family are making a fresh start. Fran wakes one night to make a devastating discovery... I'll leave you to read and find out the rest if this type of book takes your fancy.
'The Book Thief' by Markus Zusak - well, what can I say? This one has been on my 'to read' shelf for quite a while. I think at the time I bought it, I'd had a spate of reading books set in the First and Second World Wars (this one is set during the Second World War in Nazi Germany) and I decided to leave it for a while, as I like to vary my reading genres from book to book as I read. I think I'd been waiting for what felt like the right time to read it. Was it worth the wait then? The answer to that is a big 'yes' and it's an absolute 'must read'. Unusual in that the story is narrated by 'death', it follows the life of a young girl Liesel as she is exposed to the horrors of Nazi Germany. Buy and read it now. I don't know why it took me so long!
'The Seige' by Helen Dunmore. I picked this book up in a National Trust second hand book shop - these book shops are well worth a browse for a bargain. I bought it purely because I'd already enjoyed reading a few of this author's other books, so thought it would be worth a look. Again, it's been sat on my bookshelf for some time, but somehow I decided to pick it up and give it a try. And I'm pleased I did. Another historical novel, set during the 'Seige of Leningrad' in the Second World War and following the lives of four ordinary people, united by love and fighting for survival. This book had me researching further into the history of St Petersburg - it actually left me wanting to visit this city with its powerful history and architecture that's brought to life in the book. Maybe one day sometime...
'A Noble Radience' by Donna Leon. Donna Leon is an American crime writer and most of her books are set in or around Venice and that's why I enjoy this author's books so much and especially her series of books about Commissario Brunetti. Brunetti is a police detective solving crime mysteries in Venice. Venice is one of my favourite places and I enjoy reading a book that is set in a foreign place I've visited. I'm slowly working my way through the whole series of the Brunetti novels and enjoy the characters and families in the books and the vivid descriptions of Venice and Venetian life. I always have the next few books in the series on my book shelf ready to pick up just in case I fancy a little wander around Venice.
'Body Surfing' by Anita Shreve. I've read quite a few of this author's books - again I picked this one up in a National Trust second hand book shop for a bargain knowing I usually enjoy this author's work. I enjoy Shreve's easy style in how she unfolds a story. Her stories are usually about emotional and complex family relationships. In 'Body Surfing' she weaves her story around the character Sydney, a young widow, and how she is drawn into another family's destructive web of old tensions and divisions. It's well worth a read.
What have you all been reading recently? Can you recommend any more good books? I'm always on the lookout for a good book and especially at the moment as I'm still slowly recovering from the pneumonia and flu infections I had recently, so need to pace myself and rest often. Plenty of excuse for snuggling down with a good book!
Fortunately I'm making progress now and my latest clinic this week was very encouraging. I'm back again in a months time, where they will reassess my lung function properly, as it too early days yet to do that until the inflammation clears more. It looks like I'm going to be needing some surgery in the near future too as a preventative measure to help my lungs. This is following test results after my lungs were found to be scarred after the acute rejection episodes I had back in autumn. But more on that later when I know more about it all myself. It's been a tough seven months with one thing or another and there's a few hurdles yet, but I do feel very positive that things are improving and are going to get better.
Onwards and upwards now and here's to more books...
Monday, 24 April 2017
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!'
Thursday, 13 April 2017
It's been a little while since my last blog and that's just because I've had a blip with my health again. I literally just picked up a cold to start with, but having very little immune system due to my transplant, unfortunately I wasn't able to fight it off. My transplanted lungs were already left quite fragile from the acute rejection episodes I'd experienced before Christmas, so infection took a hold in my lungs and I ended up being blue lighted to my local hospital.
Our NHS is constantly being criticised, but I have nothing but praise for the care I was given - I had the NHS at its best. I had an emergency home visit from the GP within less than an hour of phoning and was immediately ambulanced to the Lister Hospital in Stevenage. The GP, paramedics and the staff at the Lister couldn't do too much and it helped make me feel safe and secure. I was in quite a state physically, and mentally a bit more than worried about what was going on with my lungs. I already had a bronchoscopy and biopsy with my transplant team booked for the following week because my lung function had been dropping again and had never recovered back to where it had been since the rejections.
By late afternoon I'd been transferred to Papworth and was diagnosed with a severe chest infection and started on IV antibiotic treatment. Further investigations showed I'd picked up a strain of influenza too, so I was moved into isolation and given extra treatment for that. I think it's demonstrated to me just how serious infection can be with transplanted lungs and being immunosuppressed or if you are vulnerable due to other health issues or your age. I've always known it and have gone out of my way to try and avoid infection, but there is nothing like actually experiencing it to bring it home what a life threatening experience just catching a simple infection can become.
A few weeks in hospital and now home again, it's taking small steps and time to recover. I hadn't been able to do much for myself because of my poor breathing and lack of strength and Rob automatically went into 'carer' mode yet again. It's been difficult to measure progress on a daily basis as it's slow, but over a week we can see signs of improvement that are encouraging. I've actually managed to start eating more, which will help build me up a bit I hope. My Sats have improved, although my breathing is still a struggle. I think this is very encouraging and hopefully I will feel the difference soon. It seems to take me forever but I've been able to wash, dress and bathe independently in the last few days, which again, feels like a huge step forward.
My consultant did say this will take a few months to recover from, so it really is small steps, but I've done this before, probably many times now over this last seven years, so I am confident that if I keep on pushing myself, I will keep on progressing forwards. Hopefully things will be onwards and upwards from here.
I'm looking forward to a quiet and relaxing Easter weekend with my family and just want to say a massive thanks for all the messages of support, love and good wishes you have sent us. It really does make a difference when things feel like they're a struggle. Wishing you all a very happy and peaceful Easter weekend. Enjoy.