Tuesday, 28 November 2017
Unfortunately 'Blogger' is not updating its Apps to be compatible with the latest iPhone and iPad data therefore making it difficult to continue with my blogs using the Blogger platform.
Due to this I've decided to amalgamate my two blogs - 'Life Is For The Living' and 'This Way To The Garden' and have just one blog where I can write about a broader range of topics.
I'm still going to keep both the old Blogs open for readers old and new, but will not be updating them any more.
My new Wordpress Blog, still named 'Life is for the Living', can be found on the link below:
Thursday, 2 November 2017
This week saw the end of October, the clocks changing and shorter days, Halloween celebrations and the start of a brand new month. Here in Hertfordshire, we've been enjoying some late autumn sunshine and some glorious autumn colour.
It's all felt very uplifting, as I seem to have had one thing after another healthwise over this last month or two and have been confined to home on and off during it all. Firstly, I caught a bad cold and following from that a chest infection, but thankfully with a strong antibiotic I managed to shift it without my lungs being damaged any further. That was such a huge relief.
Next up came an adverse reaction to the antibiotic drug I was prescribed - the drug comes with a big warning that it can cause tendon inflammation and tendon rupture. All the drugs I have to take come with all sorts of awful warnings, so I wasn't too concerned. Basically transplant patients have to take the prescribed drugs to stay alive despite the toxic side effects. After a week on this drug though the calves of both my legs became inflamed and very painful and I had to stop the drug immediately. This is now an ongoing issue, but I'm happy it's very slowly improving. It is going to take a month or two to get back on track, but in the meantime it's a big struggle to walk and the only way to improve things is to rest up. It's just been pure bad luck and an inconvenience, but hopefully nothing to worry about too much in comparison to the lung problems.
I then managed to pick up a sickness bug - the winter norovirus - which seemed to go on for days on end because of being immunosuppressed. These types of bugs can be worrying too, as it can affect the immunosuppression drug absorption and then lead to rejection. Luckily and with much relief I managed to keep up with my immunosuppression meds and eventually shifted that bug too without a hospital visit or stay. The only good thing about this experience was that I had to stop and rest totally, so that helped my legs improve a little - well every cloud and all that...
Anyway having felt it's been a little stop/ start during these autumn months, the week started with a gorgeous sunny day and I was feeling much better, so we decided to get out in the fresh air and see some of the lovely autumn I feel I've kept missing out on. We enjoyed a few days out, Rob pushing me around in my wheelchair and with Ted in tow usually leading the way! The wheelchair has kept coming in handy over this last year and this time has been a godsend because of the situation with my legs.
I felt like a child at Christmas going around the gardens at Wimpole Hall - I think just because I'd been stuck in for days and having been worried about ending up back in hospital. It was just such a mild and beautiful day too for the time of year. We had lunch in a quaint little Cambridgeshire pub first called 'The Poachers', which was lovely and I was surprised by how many plants were still out in full flower in the walled garden at Wimpole. It was good to be out enjoying the real world again and enjoying nature - warm sunshine, beautiful warming colours and warming food.
When the weather was good again the following day, we went off to Ashridge Estate: I particularly chose Ashridge because it's a huge ancient woodland and I thought the trees would look beautiful at this time of year. We weren't disappointed and there was a reasonable disabled route through the woodland and plenty of flat roads for the wheelchair so we had a good explore around. There's also a great little outdoor cafe restaurant, where we enjoyed lunch and then later an afternoon tea - well I do need feeding up at the moment!
I'm working hard on getting myself back fighting fit now - obviously exercising and trying to push my lungs a little is a problem when I'm struggling with my legs, but I'm trying to stay as active as is possible and move around as much as I can. Rob's also been trying to feed me up with lots of nutritious homecooked dishes, so I've been spoiled rotten yet again. It seems to have been a recurring theme this year.
I feel so sorry for him with all the running around he seems to be constantly having to do - always caring for me and nursing me as well as being chief cook and bottle washer. I'm never sure who it's worse for - me or him.
It's been a really uplifting week and good to be on the mend again. Besides being out and about a little, I've also been back to my cooking again, with much relief to Rob. Here's one I cooked last night - lamb hotpot with crusty homemade bread... nice and warming for these colder and darker nights.
Wednesday, 18 October 2017
It seems to be that time of year again, when everyone is coughing and spluttering and all sorts of cold and flu viruses are flying around; that time of year when we're urged to have flu jabs to help protect us through the winter season. I did have my flu jab all arranged, but then I've been having more fun and games with my health over the last few month or so and been unlucky to pick up a bad cold that turned into a chest infection.
Luckily and with much relief I've managed to shift it, but not without its problems.
A cold and chest infection is nothing to most people, but if you've had a transplant and therefore have little immune system then it can become a big threat to your health. Being immune suppressed means that your body really struggles to fight the virus and often the virus easily takes a hold and causes respiratory infections, which can become life threatening. It also takes a long time to clear any infections, as your body is unable to offer much resistance, so they tend to linger for weeks.
For lung transplant patients, it is even more dangerous and there is serious danger that the transplanted lungs can become damaged. This is a very real threat and actually happened to me earlier this year. I'd already lost twenty five per cent of my lung function due to a series of acute rejections of my lungs, then I caught a common virus called parainfluenza - it's not a strain covered by the flu jab and symptoms for healthy people are very similar to a common cold.
For me, it resulted in being blue lighted to my local hospital and then being transferred to Papworth Hospital, my transplant centre, for appropriate treatment, as pneumonia had took a hold in my lungs as well as the paraflu. My lung function fell down to less than twenty per cent and I was hospitalised for over three weeks. I was allowed home still on intravenous antibiotic treatment, had to be nursed by Rob and it took me months to feel better and recover some of my lung function. It happened back in March and by June I'd begun to feel much better in myself, but unfortunately only managed to recover my lung function to around fifty per cent.
That is the detrimental effect these bugs can have. I've been told that I'm unlikely ever to get back to having the seventy five per cent lung function I had back in February, and the hundred per cent I had only last year has become a long lost dream.
In many ways though, I know I was very lucky in the circumstances, as I've very sadly lost a few of my transplant friends this year to pneumonia and respiratory infections. I'm not only grateful I survived it, but grateful that I did manage to recover some of my lung function again too, as this isn't always the case for some. Although I'm quite breathless and limited now on walking, I'd been getting out and about with some help and I'd managed to put the wheelchair away again. I'd taken all the positives from this situation, that I'd come through it and was enjoying life again.
Obviously with that experience fresh in my mind still, catching another cold and it developing into yet another chest infection filled me with complete terror. I had to act quickly and my Transplant Centre did the necessary tests to identify the virus and under their direction my GP prescribed the drug needed to treat it promptly. It was a case of waiting and seeing and hoping against all hope that I wouldn't lose any more lung function. The drug - a powerful antiobiotic treatment for pseudonomas called ciprofloxacin - did the trick and cleared up the infection fairly promptly; however, part way through the course of drugs, I began to have an adverse reaction to it.
Unfortunately I developed tendonitus in both calves of my legs and then my left shoulder. Tendonitus and ruptured tendons is a well known side effect of the drug and it is excruciatingly painful. At the moment, it's left me unable to walk properly, but we've dug out the trusty wheelchair yet again so we're trying not to let it stop me doing things that I feel are manageable. It can take weeks or months to subside, so it's a case of waiting and seeing how things go. The bad response to the medication was just unfortunate and not life threatening though, so again, I'm counting my blessings that my lungs have managed to remain stable through this.
This latest cold has also resulted in an important stomach fundoplication operation having to be cancelled and having to cancel my flu jab. Luckily these are all being rearranged, but just catching another simple cold has managed to cause so much chaos yet again.
All these problems are why I try hard to avoid infections: why I'm always using hand gel and hand wipes and frantically dettoxing the house and always usually wear a scarf when I'm out in case some stranger decides to start coughing and spluttering around me. You'd be shocked how many people do this and don't even bother to put their hand over their face. It's why we say to friends and family please don't visit us if you have any infection, or why I might avoid meeting up with friends or visiting people who have infections. It's not because I'm paranoid, infection has become a real danger now in this fight to stay healthy. It really is a big enemy.
Despite all this though, it's so important to keep on living life to its fullest and make the most of each day, so armed with the hand gel, the dettox wipes, hand wipes, a useful scarf and a little caution, I'm trying to go out and about as normally as is possible... There's always an element of risk, but life is precious and needs to be enjoyed to the full.
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.