Four Years On ...

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. 

The Fitbit

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? 

It's What You Can Do, Not What You Can't

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.

National Walking Month

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. 

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.  

Posters from 'Living Streets' (UK charity for every day walking) 

The Gift of Life

I've been incredibly lucky to have received my life saving heart and lung transplant over three years ago and during those three years I've been able to see and do so many things. There have been big family milestones such as Rose's 21st, our Silver Wedding Anniversary and seeing Sarah and Oli get married.  This autumn I saw both our girls graduate. 

When I found out I was really sick before my transplant these were all future events that flashed through my mind . A myriad of pictures one after another whizzing in front of me; future dreams; dreams that I'd perhaps always taken for granted now slipping away in the face of illness. And then came the gift of my heart and lungs - the gift of new life for me and a gift that restored our family again. A gift that gave me back those dreams. 

Now our family has been given another new gift of life, our brand new baby grandson, Freddie, born just a few weeks ago. My dreams back then didn't stretch as far as this - I hadn't dared hope I don't think or dared to even wish for so much. Now every achievement, dream and wish has been surpassed with the arrival of Freddie. I cannot thank my donor or their family enough for enabling me to  see this moment and to hold my precious first grandchild in my arms. 

Let's Talk About Pulmonary Hypertension

November is Pulmonary Hypertension Awareness Month and this week it is Pulmonary Hypertension Awareness Week in the UK. Pulmonary Hypertension (PH) is a rare, progressive and incurable disease. It is a serious condition that causes high blood pressure in the pulmonary arteries, which can severely damage the heart and lungs. 

Unfortunately not many people have heard of it, so if you suffer from it, the lack of awareness can add to all the stress of the diagnosis and the battles you have to cope with on a daily basis. When you suffer from a rare disease like Pulmonary Hypertension, it can feel very isolating, as people don't understand about the disease and you are often misunderstood. Only circa 7000 people are affected by PH in the UK and it can affect anyone regardless of age or ethnic background. It is more common in women than men. 

Pulmonary Hypertension is a very general term to describe this disease, but it is a very complex disease and really is much more than just 'pulmonary' and 'hypertension'. Indeed, it does very much involve 'hypertension', which is high blood pressure and with Pulmonary Hypertension it is a diagnosis of high blood pressure in the blood vessels of the lungs. When I suffered from Pulmonary Hypertension I must admit I used to become quite exasperated with this tag of 'hypertension', as people continually told me all about their high blood pressure problems and the tablets they were on for it, which is a totally different problem. Simple and straightforward high blood pressure can be extremely dangerous, but it can also be safely controlled by a few tablets and lifestyle changes and isn't usually a fatal problem unless it's undetected. 

Pulmonary Hypertension, however is high blood pressure in the lungs and although it can be treated to try and stabilise a patient, it cannot be cured and it becomes progressive, damaging the blood vessels in the lungs, causing severe breathing difficulties and the heart to overwork until it begins to fail and it can become fatal. Treatments can be harsh, with difficult side effects and can include: oral heart failure tablets such as diuretics; targeted oral treatments to stabilise the high pressure in the lungs; oxygen therapy; intravenous medications and major surgeries such as operations to remove blood clots from the lungs, lung transplantation and heart and lung transplantation. 

PH patients suffer with a range of symptoms such as breathlessness, extreme fatigue, dizziness, fainting, swollen ankles and legs, plus the side effects of varying levels of medications. 

Take a look at the PHAUK website to find out more about the causes, the symptoms and the treatment of PH, as they are explained well and in depth on here.

PHAUK WEBSITE

Pulmonary Hypertension is no 'ordinary' high blood pressure, in fact when I suffered from it, my 'ordinary' blood pressure was perfectly normal. I looked perfectly normal and well a lot of the time too, as heart and lung failure isn't something that anyone can see. It's something that's happening inside you, only you know how fatigued and unwell you feel, people cannot see it. It makes it difficult for others to understand when they cannot see you are sick and it is a disease that is unheard of. That is why we need to continue raising awareness to help others to understand more about the complexities of this disease and the impact on a Pulmonary Hypertension sufferer's life. 

My own PH journey was a difficult one, with many hospital admissions and emergencies, countless tests and monitoring; many complex medications including combinations of oral medications, inhalers and complicated intravenous medication; a two year wait for, and then undergoing a heart and double lung transplant. My transplant has given me such a better quality of life, but a transplant does entail a whole range of other medications and new medical problems to cope with. My transplant was because of PH and my transplant journey is very much a part of my PH journey. 

When people say, 'You haven't PH any more - why keep going on about PH?' It's because PH has been a big part of where and who I am now. It's in my past, but has shaped my future. It's because PH is so misunderstood. It's because so many of my friends still suffer with PH. It's because we still hope for a cure for PH. 

Part of the reason I wrote my book 'Life is for the Living' was to help raise awareness of Pulmonary Hypertension - to try and show others what it is like to live with a rare disease and undergo the varied steps of treatment as the disease progresses and the impact it has on a sufferer's life. Any proceeds from my book are for the charities that helped me through my journey and continue to do so, including the PHAUK, the charity that gave me advice, support and put me in touch with other Pulmonary Hypertension sufferers at a very desperate time in my life. 

PURCHASE 'LIFE IS FOR THE LIVING'

I will always campaign to raise awareness of Pulmonary Hypertension, because once I didn't know 

anything about it. It didn't really matter to me back in those days. Why take the time to learn a little about any rare disease? Well it may just save a life - your own or someone else's or help you to understand what someone else is dealing with and going through. 

I didn't know anything about PH and its symptoms once. Early diagnosis equals better prognosis. If only I had. 

JOIN THE PHAWARE GLOBAL ASSOCIATION

Happy Retirement

Retirement. It's what many of us eventually strive towards, once we've reached all those career orientated goals and are beginning to think it's time to spend time on ourselves more, do those things that we may have always wanted to do, but can't ever fit in between our busy work lives and other commitments. It's something we may think of when our children have flown the nest and are happily established in their own adult lives and we can relax and let go a little. 

The retirement situation has been a little different for Rob and me, but yes, Rob has now finally retired from work. This is after quite a bit of stopping work and then starting again because of my ill health over the years and that's how things have been a little different. Of course, we tried to make the most of all the time he's taken off work, but during those years our time has been peppered with some extreme health issues. It's been a series of high highs and low lows. A rollercoaster until I received my transplant and transplant still does not come without its ups and downs and trials and tribulations. Having transplanted heart and lungs is a condition that needs to be permanently managed and does usually come with a shortened life expectancy. We are forever aware of this. 

We decided at the last minute to go on a city break to Budapest to celebrate Rob's retirement. We had a few reasons for deciding to do this, obviously his retirement being a big factor and being yet another excuse to celebrate, as life is so precious nowadays and we don't need much excuse. It's a case of when the going is good, try and reach for the stars while you can and while they're there in front of you. 

I don't think Rob was that bothered about travelling abroad though, when I first mentioned that maybe we should do something special to celebrate his retirement. We'd been very fortunate and enjoyed a few lovely weekend breaks and holidays in England this year. We've had so much beautiful weather too, which seemed to be continuing on and on. 

I felt quite strongly we should mark it with something special though, as Rob was forced to quit his career when I fell poorly and became my carer almost overnight following my diagnosis of Pulmonary Arterial Hypertension (PAH).  I literally had to walk out of my career too. There were no 'leaving', 'retirement' or 'moving on' celebrations, the usual get togethers with colleagues for a farewell drink or meal, we merely walked out on our usual routines and daily lives and careered head on into a battle for survival, uncertainties and the unknown. 

On retrospect, we couldn't ever halt or change how things happened and the course of what was to come and I've managed to survive and have improved health so that's all that matters for us both. I've always felt guilty and saddened that Rob had to give up so much to live with an uncertain future and I was pleased he'd been able to return to work since my transplant, albeit being part time and contract work, which suited our situation. I felt it was good for him to have his work, the opportunity to be in the real world and not always being in what has become our other world of hospital and transplantation. 

This time around Rob has decided for himself to retire and I'm delighted he's been able to have this opportunity without it being forced upon him; that he's been able to make his own deliberate choice. It feels like the more normal and planned for retirement I think he always deserved. That's the main reason I felt his retirement should be marked somehow; to make some sort of stance that we got there in the end; that we've both reached retirement together although we went a long way round to achieve it. 

It's been a lovely time for Rob during his last few days at work, enjoying celebrations with his colleagues and being able to leave in what has been a more usual manner. I've felt so pleased, after all the years of him struggling with work on and off because of my needs, that his working life has eventually finished on more of a high and more how he would have planned and dreamed of before I ever fell ill.

Another reason why I wanted to travel abroad again was because of my health. It's been a year since we travelled abroad and I know that I've been really fortunate to be able to do lots of travelling since my transplant and especially visiting several countries abroad during my second year post transplant. My health has been more challenging this year though. 

It started with a difficult bout of CMV virus last November, which resulted in being hospitalised for weeks and over Christmas, being unwell for a few months and has been what seems an ongoing battle to keep it under control, prevent it reactivating and dealing with the resulting havoc it has caused ever since. This manifests itself with stomach and colon inflammation and ulceration and the associated pain and severe fatigue. I've worked hard to try and overcome this with diet, exercise and pacing myself more. My transplant team have also been more than helpful and are still monitoring me very closely and regularly, adjusting my medications so things are kept in good control. I'm still having monthly CMV tests and clinics more regularly than I had been, which I'm happy about, as it gives me the reassurances I need.

I'd had to cancel quite a lot of things we'd been looking forward to during some of these difficult periods, so I could recharge myself, help myself better and get myself back to the good health I'd been enjoying since my transplant. Regaining my health was the most important thing, so it didn't matter so much to have to cancel in the scheme of things. It's always good to plan things to look forward to, but if things don't go as planned, it really doesn't matter. We accept this happening as part of our lives now. Attempting to go abroad again though, felt like it would be a big step. A step that would be a small victory against all this year's health problems and show myself I can overcome them and still make the most of everything life offers when the going is good. 

We love city breaks and seeing new cultures and places and this time we chose Budapest -  we've drawn ourselves up another list of cities and places we'd like to see and this was a favourite. We managed to have a wonderful time, exploring yet another new place, seeing new sights, enjoying more beautiful sunshine, having fun and celebrating retirement and life. It was another chance to live life to its fullest before we reached the end of my third year post transplant and it always goes without saying, all thanks to my donor.

Of course, we don't take this period of 'retirement' for granted. Reaching this stage in life is an enormous bonus, it's something many people don't have the chance to have, so I see growing a little older as a complete priviledge not something we should moan about. I often laugh how the government keep changing the state pension ages - I know it's not a laughing matter really. State pensions are becoming ridiculously out of reach for the healthiest of people. Everyone worries about how they will manage, but I know if I'm ever lucky enough to reach the sixty seven years it is currently, then it will be a nice problem for me to have. In the meantime, Rob and I plan to keep ourselves busy with things that mean the most to us and keep on enjoying life to the full.