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...