Here’s to November

We start November and I feel that cringe deep inside about those long, cold winter months ahead and those shorter days and longer nights. I also have that fear of more bugs and hospital, which seem to have become a bit of a winter tradition in my life as much as Christmas is. As we move nearer to winter time, I find myself needing some motivation and inspiration to conjure up of all those good things about these darker months.

On the health front, I’ve had my flu jab and I’m on preventative measures to help my lungs over winter. I’m at clinic for checks every few weeks. I’m trying to keep fit, rest, eat well and avoid the bugs where I can. I know I’m as prepared and ready as can be, so it’s just a case of one step at a time and taking each day as it comes and fingers crossed to stay in good health.

As for the rest, the start of November has been such a pleasant surprise. It has been very cold compared to the milder temperatures we’ve had recently, but some of the days have been so glorious and sunny that we’ve wrapped up warm and been out and about in the countryside. We’ve been enjoying all what remains of the stunning autumn scenery – those golden trees and leaves against brilliant blue skies and fluffy, high clouds.

It’s scenes like this that have reminded me that the winter months can be just as much fun as those of summer and have me thinking of all the positive things to look forward to.

It’s lovely to dig out those warm winter coats and woollies, those snuggly scarves, hats and gloves in anticipation of cold, crisp walks with our dog, Ted. Those walks on a Sunday while a roast is cooking in the oven. The warm house and delicious smells when you return.

If you don’t want to cook, a country pub with a roaring log fire is hard to beat. I remember walking into a pub high up in the hills on our way back from Christmas shopping in Bowness last year. We were the first to arrive at lunch time and were given a huge welcome and told to sit by the fire – it was a perishing cold day. They piled more logs on the stove for us and we warmed ourselves while we waited for a delicious hot lunch.

Then there’s preparing hearty winter dishes for dinner, cosy dinners by candlelight and cosy nights by the fire with the curtains all drawn. The dog by my feet – or more often than not snuggled up beside me. Soft cosy clothes, socks and slippers. A cold and dark night is a great excuse to wrap up under a blanket in favourite chair and read or indulge in watching a box set or two. Of course, scented candles are a complete ‘must’ and that’s after a long pampering soak in a hot bath.

Then there are the glorious sunrises and sunsets to enjoy – the sunrises are late enough to catch a glimpse of when you wake up on a winter morning and the sun sets nice and early and well before bed time. Then the excitement of waking up to fogs, mists, heavy frost or snow – not so exciting if you have to go to work or travel – but beautiful if you can watch from inside and go about your day without the hazards to worry about.

Then there’s the glamour and glitz of ‘Strictly’ – now a recognised winter staple – the sparkly costumes, the fabulous dancing as we move through Halloween, Bonfire Night and towards Christmas.

Christmas – it’s probably the biggest most excitable thing looming as we step into November. November is the time I usually finish off buying all the presents and start the wrapping in readiness for December. I love a Winter Market or a Christmas Market. We’ve even managed to visit one already last week at Holker Hall and it was such a perfect sunny day – beautiful stalls with an assortment of wonderful goodies, warming pit fires, a live jazz band and delicious hot food and drinks.

I love the build up to Christmas – the anticipation, the preparations and then the actual festivities and day itself. Christmas shopping, Christmas carols, Christmas concerts and Christmas parties.

Well, I think I’ve found enough lovely things to think of for now to inspire and enjoy myself until January at least! What do you enjoy about the winter months?

Happy November everyone!

October Sunshine

October is nearly over – where did it go? It’s been such a glorious and beautiful month with plenty of warm mellow sunshine this year. The clocks have gone back soon and we enjoyed the benefit of an extra hour in bed. I always like it when we gain an extra hour, not so much when it’s the other way and we lose one though.

During this month I’ve still been recovering from a virus and pneumonia and so the beautiful weather has been a real boost. Being ill again has knocked my lung function down once more, so it’s been a case of keeping up the physio by exercising my lungs as much as I can. Hopefully some of my lung function will return and I’m hoping it will be back to the 48% or so I’d managed to get it to during the summer. Breathlessness is a thing I’ve now had to reluctantly accept back in life, as my lungs have deteriorated during the last few years. When my lungs work at around 50% though, I find I can manage and still get out and about for short walks and I’ve counted my blessings knowing from my past experiences and those of friends that things could be much worse.

The lovely sunshine has meant we’ve been able to get out and about with the help of my trusty old wheelchair to take the pressure off my lungs while they recover. I’m trying hard to build up my lung capacity again by walking as much as I can, but I’m still very breathless, so it’s literally one step at a time and the wheelchair in the meantime enables us to be out for longer and explore that much further when it’s a glorious day. I do intend for it to be only a temporary measure though. The weather has been very uplifting and great motivation while I tackle this blip.

I do love this time of year and autumn – Rob laughs at me and says, ‘But you love every time of year!’

I love trying to catch and hang on to those last snippets of summer. This year we keep saying, ‘This must be the last warm sunny day’. Each week, we keep on saying it, as the weather keeps on teasing us with higher than normal temperatures and warm sunshine.

At the same time as hanging on to summer, I’ll be excited about all that October and autumn have to bring.

I love the colours of October – the browns, golds, yellows, oranges, russets and reds and the way the flowers keep on flowering and flowering, pushing against time, as though they’re challenging nature before the first frosts appear. There’s been so much colour in the garden this October and so many gardens we’ve visited recently have looked stunning with banks of colourful dahlias, michaelmas daisies and remaining summer plants like roses, verbenas and salvias, which stubbornly refuse to stop blooming even though winter looms. The late flowers brighten up the garden and can light up the day.

Best of all I love the trees and leaves in October. I love how the colours change and how beautiful they look in the autumn sunshine when the sun is lower in the sky and has a deeper, golden hue. I love it when there’s a gentle breeze and the leaves trickle down slowly and then there’s carpets of leaves to wade through and kick beneath your feet.

I enjoy cooking more in autumn – October always seems to kickstart my cooking after the salad days and heat of summer – making hearty warming dishes and cooking up the apples from the garden – there’s a sense of preparing for winter and the colder days.

Of course, October always ends with half term holidays and Halloween. I like to join in the fun of it – Rob will carve out a pumpkin or two and I’ll make the obligatory pumpkin soup in the slow cooker. It’s a fun time for children and families and I love the see the wonderful colouful pumpkin and squash displays when we’re out and about. I like to have sweets in the house in readiness for the trick o’ treaters.

That’s my October. 🎃🎃🎃

September

It’s difficult to have a favourite month, as every month of the year has something special to offer. There’s always something unique to anticipate as each month looms on the horizon: from the festive month of December and all the hectic preparations for Christmas, to the peace, tranquility and perhaps even snow of January; from the anticipation of lighter evenings and warmer days during those spring months and the sunshine, heat and holidays of the summer.

September has always felt special to me though. I suppose it starts back from school days and the start of the school and academic year being September. September always feels like the time for a fresh start, new learning and new beginnings even more so than January when we’re supposed to reflect on the past year and think about new resolutions for the year ahead.

September was the month when Rob and I chose to get married and the month when I received my life saving transplant, so it’s a month that culminates in celebrations for our family. If I could have chosen which month to have received my transplant, it would have been September. For me, it truly is a month of new beginnings; a month to celebrate life and all it has to offer.

I always look forward to the weather in September, it’s usually cooler after the heat of summer, but still mild enough to be out and about enjoying the sunshine and fresh air. We’re usually lucky during this month as we often have plenty of sunshine and it’s calmer and quieter after the busyness of the school holidays.

We’ve just passed the Autumn Equinox, where the astrological year is marked by the sun crossing the earth’s equator from north to south. This marks the beginning of Autumn, nights drawing in and cooler weather. The meterological year marks the beginning of September as the start of autumn. Whichever way the start of autumn is defined, September is definitely the month where summer somehow manages to gradually ease into autumn. The garden defines this: we still have plenty of summer flowers – annuals still happily flowering along until the first frosts hit, but then many flowers have turned to fruits and berries, ripe for picking and preparing for winter.

For me, September is the month that leads us to crispy autumn walks, cosy warm evenings by the fire, enjoying the last of the warmer weather and then digging out those warmer winter jumpers and clothes. The beginning of a whole new season to embrace.

That Was August…

The days of August have flown so quickly. I think it’s because we’ve been so busy just enjoying life and the exceptional weather.

During the first few weeks we were away in the Lake District and then we had a week in south west Scotland. We experienced a wide range of weather from thirty degrees heat, to rain and stormy winds and then very pleasant sunny and cooler weather, which I enjoy most as I can breathe better and be more active.

We really tried to ‘pack it in’ and live those long summer days to the fullest, getting out and about from morning til dusk and visiting interesting places and catching up with family and friends.

Back home again for the rest of August, the weather continued to be good and we’ve also had a few welcome downpours after the last few hot and dry months. After turning yellow and dying back, the grass is bright green once again and the plants in the garden have sprung back to life. Many of the plants are enjoying a second flush of flowers.

Since we’ve been home, we’ve carried on enjoying the lovely summer days, catching up with friends, having days out. I’ve also managed to cram in lots of medical things, various scans and tests that have been pending that have all proved very positive and a full MOT at Transplant Clinic, which was a good one. So, all is as good as it can be on the health front.

For the first time in two years, I’d been allowed to go for three whole months without a clinic visit and I wasn’t fully convinced I’d stay the course, but I managed it and have to say that I’m feeling the best I have felt in a long time. Staying free from infection for a few months has definitely helped me get back on my feet properly at last. Summer has felt great because of this, as well as the beautiful weather we’ve had.  I’ve been pinching myself at times that I’ve actually got back to some normality and fitness after too many ups and downs with infections and hospital.

I’m optimistic now that this might continue. I’ve another three months off Transplant Clinic, although I’ve been referred back to UCLH now for the stomach fundoplication, as I’m fit and well again. This may throw a spanner in the works, but at least I’m in good enough health to go ahead with it and it needs to be done while I’m feeling fit. I’m already super-organised and have booked my flu jab, just trying to stay a step ahead of the game of battling infections.

One of the loveliest things we’ve been enjoying, has been spending time with family and in particular our little grandson Freddie. It’s been a sheer joy looking after him and taking him out and about on sunny days and just to enjoy watching him play out in the garden.

I treasure these special times with him. They are particularly poignant, as I enjoy every minute with him knowing it’s only thanks to my donor and their family that these moments have been made possible. A few years  ago, I wouldn’t have dared to dream of grandchildren.

Now we’re in September, it always was my favourite month, but with the anniversary of my transplant looming it will always be special and be held dear in my heart. It’s an emotional month for me and my family and we’re making lots of plans and looking forward to it.

Midsummer

We’ve just had the summer solstice and the longest day of the year. We’ve been enjoying some beautiful and sunny warm weather this June, which seems to have continued on from spring. It feels like summer has been here for a while now.

The garden is in full bloom, bursting with Roses, honeysuckles and an assortment of beautiful flowering perennials. Colourful annual plants are tumbling out of pots and hanging baskets.

The lovely warm weather has made it a joy to be out in the garden every day either tending and tidying plants or simply relaxing and enjoying the birds and flowers.

Lots of you have been asking about my health and I’ve deliberately kept quiet on this front, as I don’t want to jinx anything, but I’ve been feeling much better now than I have in a very long time. After all the battles with rejection, infections and pneumonias of the last year or so, somehow I’ve pushed through and things seem steadier now and I’m feeling much fitter and stronger.

The weather has certainly been a good motivation for getting out and about and increasing my exercise capacity, pushing those lungs and building back my strength. I’m so grateful for this, it really does make me appreciate life and the chance to enjoy all it offers. I’m hoping things continue like this alongside with this lovely sunshine and the summer days to come.

A Restful Easter

We enjoyed a lovely time this Easter, savouring some very special moments with family.

I wanted Easter to feel extra special after what’s felt like months of starting, stopping and restarting and stopping again with my health. Feeling so well again and having had a good clinic and now having some respite from the stomach operation, I just wanted to make the most of life and put some of the health related stresses behind us.

Also, casting my mind back to last Easter, when I was just out of hospital and still too unwell to enjoy it properly, it felt especially important to make the most of this Easter, live life to the full and try and become even more healthier.

With this in mind, we treated ourselves to a lovely few days on the North Norfolk coast, renting a house there and Sarah, Oli and baby Freddie joined us, which was lovely. North Norfolk is a favourite place of ours. We enjoy the walking, the spectacular beaches, countryside and wildlife, and in between all the exploring there’s plenty of good pubs and cafes to relax in too.

It’s a very dog friendly place, so we always bring Ted and Alfie with us and get lots of enjoyment from trying out different walks with them. Many of the pubs and cafes allow dogs inside too, so we can keep them with us when we want to eat out or go for coffee, which all adds to the fun.

We enjoyed some beautiful sunshine and explored both new places and favourite places we’d visited before. I especially enjoyed being out and about again with my camera in such stunning places and I found being by the seaside and in the countryside very uplifting and motivating with all fresh air and extra walking – all adding to improving my health hopefully.

One very special moment was seeing Freddie toddling on the beach for the first time at Brancaster in his first pair of tiny wellingtons. He loved it and both the dogs loved running free alongside him. We had a lovely Sunday lunch afterwards with the dogs sleeping at our feet and Freddie in his high chair tucking hungrily into his food. Simple pleasures, but very special ones.

Thornham village where we stayed had a good dog friendly pub – The Orange Tree – they even had a menu board especially for dogs. It also had a great deli with a dog friendly cafe, so on some days we found ourselves just enjoying some local coastal walks around the salt marshes and then either popping into the pub or deli for meals or drinks on our way round. Again, simple pleasures, but all very relaxing.

Following our lovely and relaxing Norfolk trip, it was time to enjoy Easter weekend. We weren’t so lucky with the weather, but that didn’t really matter so much, as we had a full house on Easter Sunday and Monday, with everyone stopping round. On Easter Saturday, we had a lovely day cooking and preparing food and we enjoyed a lovely family meal and Easter egg hunt on Easter Sunday and a very relaxing and lazy Easter Monday.

Now we’ve reached April, I’m really hoping for some WARM and sunny weather and getting back out in the garden again.

Here are a few Easter pics…

Fundoplication Fiasco

I thought I’d be in hospital again this last weekend, as I was rescheduled to have my stomach fundoplication operation last Friday. This was following it being cancelled the previous week at the last minute just before I went down to theatre. The whole incident had felt very stressful, especially with the added stress of struggling on public transport to get to London and back in the heavy blizzards, snow and freezing temperatures. The whole incident had taken some ‘coming down’ from.

All settled in the hotel

I was contacted the day afterwards though, with many apologies and a promise of now being a ‘top priority’ and that I would be scheduled to be ‘first on’ for my next appointment. I therefore agreed to a new date of Friday for the operation to go ahead again and all the papers were sent out to me confirming it. In some ways I had reservations, as I needed to start the mental and emotional build up all over again, so soon after the big ‘come down’. It’s an operation I know I need, but don’t particularly feel very enthusiastic about.

After all the years of procedures and operations on my heart and lungs, I do feel reluctant about having other parts of me operated on. I worry it will cause more things to be monitored, more clinics and doctors to be under, more things to possibly go wrong.

It might seem that I’m ungrateful to feel like this, but I’ve had a difficult run over the last eighteen months with my lungs and I’m voluntarily going to put myself out of action for a while yet again when I’ve only just got back on my feet.

There also comes some high risks with this whole procedure being an immunosuppressed patient, a heart and lung transplant patient and a patient with poorly functioning lungs, so I’m actually quite frightened about this and quite scared of ending up in a worse state than before.

A risk of chest infection is high due to ventilation during the process. The thought of going through something like the pneumonia again, that I experienced last spring and that damaged my lungs is terrifying. There aren’t any guarantees, but the plan is that I will be looked after in intensive care and all the risks will be of high consideration throughout.

An early Mother’s Day Celebration

So why am I putting myself through all this? My lungs are struggling to work properly now, they have less than 50% capacity. There are several problems including damage from rejection, pseudonomas, damage from infection and damage from stomach acid. Lung transplant patients often suffer from the stomach problem due to the actual transplant operation and new organs displacing the stomach and the continual use of necessary steroid medication damaging the sphincter muscle. If the problem is left uncorrected then in time the lungs will continue to be damaged and reject.

All three of my transplant consultants are in agreement that the operation will help prevent this happening and basically if I don’t have it done then my lungs will continue to decline in function and reject again. This operation is therefore a needs must despite all my reservations.

Hospital view from hotel

So off we went back to London for the fourth attempt at this operation, it had had to be cancelled a couple of times previously due to my ill health too. The weather was mild and dry so we had no extra stress and hazards with the travelling like last week. We travelled down the day before the planned operation, as it was the usual 7am and ‘nil by mouth’ start on the Friday morning.

It was Mother’s Day weekend coming up and knowing I was going to be in hospital and unwell on Mother’s Day, we met up with Rose and David and had a nice dinner to celebrate early. This felt extra special, despite the impending operation the following morning, as I’d spent Mother’s Day in hospital last year. At least this year we’d had chance to organise and celebrate. We’d had to put off any celebrations with Sarah, Oli and Freddie though, because they’d all had bad colds and viruses and I hadn’t been able to see them for nearly a month or so because of the risks being immunosuppressed.

Deja vu, 7am again at UCLH

7am on Friday morning and I turned up ‘nil by mouth’ for my surgery only to find out that I wasn’t even on the surgical list for that day. I was asked to sit and wait in case the surgery might be going ahead. We waited, waited, waited, waited…

Basically no-one did anything about it, there was no-one available to see us and no-one to explain what was happening or what had happened. After we kept on chasing the receptionist, who did her best to contact the relevant people, hours later I was eventually phoned by someone from the admissions department and advised it was all my own fault and I shouldn’t have ever turned up for the appointment as it still needed to be confirmed. I think I saw red at this point, as I was sitting there holding on to all the ‘confirmation’ paperwork!

Rob took the phone and eventually the person admitted they had copies of the ‘confirming’ letters on screen and that it had all been a mistake that they’d been sent out to me. So that was that, another cancellation, another load of stress and expense of hotels and travel for nothing and to add to it all not even an apology or any proper explanation from anyone! We were advised to speak to the hospital PALS  office, which we did on leaving. We have formally complained as the whole incident, compounded with the cancelled operation the week before has left us stressed, angry and upset. We shall see what the outcome is and how they can explain what happened.

In the meantime, I have received a new date for yet another attempt at the surgery – attempt number five. Watch this space…

As the saying goes though, ‘every cloud has a silver lining’ and I was able to enjoy a lovely Mother’s Day weekend after all, spending loads of time with Sarah and Freddie and still being able to eat and drink normally and feeling well. A huge improvement on last year’s Mother’s Day when I was poorly in hospital and much more than I had expected for last weekend. Now I’ve time to take stock, enjoy and make the most of life for a few weeks before we try yet again.

Mother’s Day flowers

February Brings The Snow

‘February brings the snow and makes our feet and fingers glow’

February ended with a bang as the ‘Beast from the East’, as it’s now been coined, took the country in its icy grip and we experienced a week of heavy snow and freezing temperatures. I thought I’d escaped those days of snow disruption now I don’t work any more and shouldn’t need to go out in it, but no I seem to keep getting caught out with snow and hospitals lately.

Back in December I found myself caught up in heavy snow when I was blue lighted to hospital with a respiratory infection and this week I found myself asking again, ‘What is it with me and snow and hospitals?’

7am at UCLH

I had a planned hospital stay for a stomach fundoplication operation, which is a preventative operation to help stop my lungs being damaged and going into more rejection. The operation has been cancelled twice already, because I was deemed too unfit to go ahead with it during the autumn. Suddenly, though, after a quick referral recently it was all back on and happening again.

 

Waiting room view

Having serious surgery with a general anaesetic is always a stress for the healthiest of people. Although I was thoroughly committed to this all going ahead whilst I was reasonably healthy, I still had worries and concerns about all the risks that had been explained to me, especially the extra concerns with my poor functioning lungs and the fact they are transplanted together with my heart.

View outside King’s Cross Station

The surgeon and anaesthetist were all prepared though and provision had been made for me to be looked after in intensive care due to the high risks involved. I was comfortable with this – well as comfortable as I could ever be. There were extra factors to consider too: UCLH hospital is situtated in central London and has no car park. It’s a bit of a hassle with my breathing difficulties commuting in and out by train, so we decided to book an overnight stay in a hotel nearby the hospital so I could manage the process in stages with the 7am start required. We were unsure how long I’d be in hospital, but planned we’d have to get a cab to get me home, as I would be contending with not only the breathing difficulties, but the after effects of having surgery and consequences of this particular surgery.

Approaching Knebworth on the train
Back home in the garden

Then came the news of the ‘Beast from the East’ and this started to stress me more than the surgery and its risks. The forecast looked dire for the end of the week and early weekend – when I should have been  being discharged from hospital and probably in a very fragile state. Because of my lungs, I’m already labelled as one of those ‘high risk’ patients in severe weather.  All I could think of was being stranded in snow. We’d had to put Ted in kennels too and although he’s used to kennels, I wasn’t entirely happy about this with the freezing temperatures.

I still felt I needed to go ahead with it though, so because of the weather we set off into London a little earlier than planned and made it to the hotel with no problems. The following morning all went to plan and we arrived at the hospital in good time at 7am. I was ‘nil by mouth’ from midnight and it had snowed overnight again and it felt perishing cold.

Not being able to have anything warm to eat or drink, made it feel even colder and the hospital has huge glass windows everywhere, so it was freezing in the waiting room and draughty corridors too. Everyone was sat with their big coats and snow gear on. It began to blizzard with snow outside and continued all morning as we all watched from the window and waited to be called.

I saw the various medical staff that needed to see me and was all prepped ready for the operation, which was planned for midday. Early on in the morning though, my surgeon had  advised that my operation would only be able to go ahead if there was an intensive care bed available.

I knew when I’d been told this and actually sitting there watching the severe weather, that there was a strong possibility this would happen. Time went on though and all the signs seemed to indicate that things would go ahead.

Then my name was called and I stood up expectantly, all ready to go down to theatre, but soon realised from the expression on the surgeon’s face that it was all going to be cancelled. They weren’t prepared to undertake it without an intensive care bed being available and there had been too many emergencies already that morning and no bed was available.

 

In some ways I was disappointed, as it had been a big effort and expense to manage to get there in the artic conditions, but somehow inside me I felt this huge relief too, as I could just get home to safety and comfort hopefully before the worst of the weather set in for the week.

I realised how much the weather had been stressing and troubling me. Not difficult when I was probably already stressed about having an operation I didn’t particular want to have, but is a needs must and with the dire weather news and forecasts being broadcast on TV continually.

A little peek of spring with a Tete a Tete in bloom

So with some very mixed feelings after such a huge build up and still heavy snow falling, we decided to try and head back home while the traffic was still moving and trains still running. That wasn’t before warming up, after being ‘nil by mouth’ for a long time, with some hot food and drinks just in case the going got tough en route home.

Where are the bluebell shoots?

Now I’m home again, I’m just pleased to be safe and warm. I don’t feel annoyed or distressed about the operation being cancelled. These things happen and someone in greater need than me has been helped. I know that when I had my transplant operation, which went on for over 10 hours during the day time, that numerous routine operations might have been cancelled while my life was being saved.

My operation has now been rearranged already. In a way I’ve had a dry run and know more what to expect and I will be able to focus on the operation itself now, rather than worrying about issues like the weather.

One thing stood out very starkly during our London visit and that was the plight of the homeless. The weather conditions were extreme and we saw many homeless people taking refuge in the corridors and restaurant of the hospital. It made me count my blessings and humbled me.

Whatever the situation there’s always so much to be thankful for – a bit of snow and a cancelled operation when you have a home to go to and a supportive and loving family to take refuge with, isn’t anything at all compared to what the homeless face in this freezing cold weather.

Palm tree has a whole new look!

So operation attempt number four will be happening soon; we’ll see what happens; whatever will be, will be; it will all be sorted somehow with snow or no snow.

In the meantime goodbye to a very snowy freezing February and watch this space for the ongoing hospital saga…

February and So Far, So Good

It’s nearing the end of February and I feel I’ve managed to do so much this year, getting out and about and trying to make up for all the lost time during the autumn months when my health wasn’t at its best.

I’ve enjoyed much precious time with family and friends, meals out and trips to the theatre and celebrating some of those annual routines on the early year calendar like Burns Night, Pancake day and Valentines Day amongst lots of other activities.We also managed to escape to the Lakes for a few days, where we enjoyed some beautiful sunshine and bright, crisp winter weather.

Then there’s been just very simple things to enjoy such as walks in the park with Ted, looking after my grandson Freddie and having him stay over and just seeing and enjoying those first signs of springs – the first snowdrops pushing through and bloooming and now crocuses and early flowering daffodils.

It feels lovely to be well enough again to do so many things both ordinary and special ones and I always feel a new appreciation in the times when my health feels better, especially after the difficult runs.

There’s been more hospital too – my clinics are still monthly, which have gone well and I’m pleased my transplant team are keeping a close eye on me after all the problems with infection and the big changes in my medication. All three of my immunosuppression drugs were halved in dose, which has made me feel much better and brighter and some of the horrible side effects that come with them have begun to recede. That’s been an unexpected bonus, as I’d just become used to living with them over last year.

I still managed to pick up another infection at the beginning of this month though, but luckily going to clinic regularly, we managed to nip it in the bud with another course of antibiotics. It’s a huge improvement over the continuous infections before Christmas. They also did extra heart tests at clinic to make sure there aren’t any new problems there that may be contributing to my breathlessness. Luckily, these were all satisfactory, so the big focus is still on trying to make my lungs stronger.

To this end, I’ve been managing to keep up the exercise regime and have successfully increased my daily walking  It doesn’t come easy, as I become breathless if I walk at a ‘normal’ pace and if I try and sustain my walking. I try and choose walks that are reasonably flat and that have benches or cafes somewhere along the route to rest and get my breath back.

Over a day though, it can be surprising how much you can do if you try and move around regularly and add in a short walk, obviously pacing it out in between resting. Not having the oxygen running through your lungs efficiently can make you very tired, so rest is as important as the exercise to me. I’ve also been keeping up the yoga, just gentle stretching, bending and breathing exercises together with following a programme of exercises for Pulmonary Rehabilitation.

I do think that the exercising together with my drug changes has made a big difference to my fitness and I feel much stronger for it. Last week I was at the University College Hospital London, to start the process again for the Fundoplication operation. It’s a stomach operation I need to prevent further rejection and damage to my lungs and unfortunately it had to be cancelled several times due to me being too unwell. I’ve another visit for a pre-op assessment yet and then fingers crossed, the surgery should go ahead and I’ll be able to put this behind me soon and hopefully carry on getting stronger and even improve my lung function a little more.

These first months of the year have gone well. So far, so good…

Photos below taken at Brockhole Visitor Centre, by Lake Windermere on our recent visit to the Lake District

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