Blossoms and Blooms

May has arrived and along with it, some beautiful warm and hot weather. The garden has suddenly burst into full bloom and has transformed itself from a bleak winter garden to a garden rapidly filling with colour. There’s that lovely backdrop of fresh green and newly opened leaves on all the trees and shrubs too. Spring is definitely here now and I think we’ve even had a taste of the summer to come with the Bank Holiday heatwave.

The blossom trees are laden with flowers and the apple blossom tree is the fullest I’ve ever seen it. I don’t know whether it’s because of the weather conditions that it’s so laden with blossom or whether I’m just misleading myself after it’s felt such a long wait to see it after all the harsh weather and winter.

My health has taken a dip over the last month or so, with a chest infection, which then sparked organising pneumonia to flare up in my lungs again, so being on intravenous medication for a few weeks and mostly confined to home, the lovely weather we’ve had on and off has been a huge bonus. It’s been lovely to watch the garden change and come to life and hear the birds singing at their fullest.

Luckily, I managed to avoid staying in hospital and have got myself back on track again now. Attempt number five at the fundoplication operation had to be abandoned due to the pneumonia, so I’m now waiting for a new date to proceed. I just need to build my strength and fitness back up, so onwards and upwards hopefully again now.

It’s been so uplifting to enjoy some sunshine, warm weather and longer days and to be able to potter around outside and enjoy lovely barbeques and eating most meals outdoors. There’s so much blooming in the garden now: poppies, forget-me-nots, peonies, clematis, bridal wreath, phlox to mention a few. It’s hard to keep track as something new keeps appearing each day. May is such a spectacular time in the garden.

It’s still springtime too and there’s still that delicious anticipation of the whole summer stretching out ahead…

Spring Time

Last week we had the spring equinox on the 20th March, marking the astronomical start of spring and the days becoming longer than the nights from now on. The signs of spring are all around us with new buds, blossoms and shoots on the trees and all around the garden. The daffodils are beginning to bloom, which usually signals that springtime has definitely arrived.

The weather seems to be confusing us though, giving us the odd day of warm sunshine and a promise of spring in the air, only to knock our hopes back with strong Siberian winds, cold and snow.

I’ve been trying to do plenty of enjoyable things since the stress of the last few weeks with the cancelled operations. We’ve enjoyed a few meals out and I’ve enjoyed cooking lots of my favourite recipes. Eating and drinking at the moment is giving me lots of pleasure for a few reasons.

For months and months up until recently I’ve been battling infections and having to have various concoctions of antibiotics and drugs, and this combined with a few bouts of norovirus had resulted in me losing my appetite and only being able to tolerate very plain and simple foods. With all this I’ve also lost so much weight, my clothes have actually started falling off me and I’ve had to start altering many of them to fit me.

Recently, I’ve been feeling so much better, managing to exercise more and with big reductions in my immunosuppression drugs and a good few weeks now of no infections, my appetite has come back and I suddenly seem to be able to tolerate eating normally again. That feels wonderful after months of eating so frugally.

Obviously, if my stomach fundoplication operation had gone ahead, it would have affected my diet for a while again and at this point I would probably still only be able to eat pureed and semi-solid food. At the moment something as simple as eating and drinking feels pretty special and with it comes the guilty pleasure of having been given some respite from the liquid and pureed diet that I hadn’t been looking forward to very much.

We’ve also enjoyed a few visits to the theatre and days out when the sun has been shining. On a visit to one of our favourite places, Wrest Park, we actually managed to have lunch sitting outside, it was so mild and spring like.

I had a full clinic review at Papworth last week too and had the great news that my lung function has improved. It’s the best it has been for eighteen months. I was absolutely delighted about this and it’s inspired me to keep on pushing my exercise regime and strive to improve my lungs even more.

I’ve a new date for my surgery now and UCLH have been taking my complaint very seriously and have spoken to me on several occasions to both apologise for the mistakes that have been made and to assure me that procedures are in place to avoid the same happening to other patients in future.

I’ve had hospital every week for the last six weeks, but now have some respite until May when my surgery is planned to take place. It feels like a more relaxed time now. Time to enjoy Easter and special time with family and friends and generally make the most of a good run of health. I now have a good few weeks to try and build on becoming even fitter and fitter in readiness for the surgery.

Hopefully better weather will be on its way too, enabling us all to venture out more and enjoy this special time of year.

Have a happy Easter everyone!

In the meantime here’s a few spring photographs (some from Wrest Park) to enjoy…

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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That Was January

January obviously signifies the start of a brand new year with new beginnings and new year resolutions. As January emerges we are still in depths of mid winter – the mornings are dark and the afternoons seem to be cut short as the sun goes down early. Sometimes it’s so cold, dull and dismal that it doesn’t seem to come daylight at all and things can feel a little flat after the buzz and twinkling lights of Christmas.

Now we’ve reached the end of January and after months of bare trees and the bleak colours of winter, there’s something quite magical about spotting those first signs of spring. Although we can’t usually see it at the start of January, January isn’t only the start of the new year, but the start of a nature’s new year too.

Look amongst those black, grey and brown winter palettes and you will spy the first snowdrops emerging – bright white droplets suddenly livening up the landscape. There are daffodil and bluebell shoots pushing through and colourful crocuses, hellebores and aconites emerging. Brilliant yellow stars grace the winter Jasmine as it springs to life again. Spring plants fill the shops: it’s lovely to have daffodils, hyacinths and cyclamen indoors while we wait for spring to fully appear outside.

By the end of January, it’s still winter, but spring feels around the corner now and that fills me with hope and promise. A whole year of nature before me and a whole year of plans and hopes to fulfil.

This January has been a good one for me. Healthwise, I’ve recovered really well from all those bugs and infections I seemed to pick up throughout last autumn. Since the new year started, I’ve become better and better. I’ve managed to build up my exercise capacity through doing yoga, pulmonary rehabilitation exercises and walking and I’m still working on steadily increasing how much activity I can manage each week. I’ve managed to get my lungs working better again and they’re back to the baseline I’d reached back last summer and functioning at nearly 50% again now. I’m now hoping this good spell will continue on and that I can improve my lungs even more.

Better health has meant I’ve been able to get out and about a lot more and catch up with friends and family. I’ve been enjoying walks in the park with Ted and visiting new and old places and taking up my photography and writing again. I’ve felt that life has returned to some normality this January and it’s lovely to be back in the real world once more. Most of these things are simple and ordinary, but feel so special when you’ve been out of action for a while and unable to do them.

Most of all, I’ve had so much precious time with my grandson Freddie. We’d had to keep avoiding each other because of infections, but we’ve both been clear of bugs during January, so Freddie has been able to visit and have sleepovers with us. Best of all, it was Freddie’s first birthday last week, so we had lots of birthday celebrations and it felt one of those very special family milestones, which ended January on a big high. Encouraged by this, I’m looking forward to all the rest of the year ahead of us and watching Freddie taking his first steps next and becoming a toddler.

I’ve also said goodbye to my old mini car this month. I’d had her for over eleven years, but she’d become unreliable and had broken down quite a lot last year. With both the car keep breaking down and my health being so poor last year, I’d stopped driving altogether. This month, I decided to swap my old mini for a new similar model.  Now I’m feeling much better and have a reliable car again, I’ve started driving once more.

This January, I’ve begun to regain my independence back, which feels fantastic after relying on others so much when I’ve been poorly. I’m looking forward to enjoying my car even more as the days grow lighter and warmer.

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Out with the old, time for a new car

January was also a great month for Rob too. Rob has been directing a play at our local theatre, The Barn in Welwyn Garden City. The play, ’84 Charing Cross Road’ has   just finished running this last weekend and was a big success with good reviews and on several nights tickets sold out. The play is a true story and Rob and the cast and crew had a huge surprise on Saturday afternoon when the real life daughter of  Frank, one of the main characters, turned up unexpectedly to watch the show.

Frank’s daughter, Sheila, came back stage to meet everyone and I was privileged to be there. She showed us pictures of her family and father and gave us lots of background information about her father and also about the bookshop, its staff and Helene, the other main character. So all in all, it was a great end to the show after months of hard work by all the cast and crew. A lovely finish to the month for both Rob and myself.

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The cast with Sheila, Frank’s daughter, in the centre

And that was January. I’m now looking forward to more good health and good times for February…

How was your January?

January Beginnings

Happy New Year to each and every one of you. I think everyone will be well underway trying to stick determinedly to those ‘New Year’ resolutions now that we are well into January.

For me, I have ‘New Year’ hopes rather than resolutions. 2017 was a very difficult year health wise, probably one of my most trying yet. I started 2017 with losing some of my lung function due to episodes of rejection in my lungs and then I lost more as the year progressed following bouts of pneumonia and flu.

It was the year I had to face the fact that my transplanted lungs weren’t functioning as well as they did in those first few years after transplant. It was a hard thing to deal with, to suddenly be facing those pre-transplant fears and ill health experiences all over again for a second time around. From the post transplant euphoria, I felt like I’d been brought back to earth with a big  bang at times.

Autumn brought more problems with chest infections, norovirus and adverse reactions to drugs, coupled with stomach problems causing lung damage too. A planned stomach fundoplication operation had to be cancelled over and over as my health was too fragile. I’m still waiting for that to go ahead yet.

The year finished as it had gone on, with a stay in hospital due to another chest infection and then another bout of norovirus in between Christmas and New Year. It felt as though my health had driven a lot of what I was able to do or not do during the last year.

At the same time I’ve felt very positive, because with every incident I’ve managed to bounce back and feel better and although my lung function has fallen dangerously low at times, somehow or another I’ve managed to improve it and bring it back to nearly 50%. That’s only half of what it used to be, but it’s enough to manage with and the outcome could have been far worse. It’s a massive positive.

I’m forever thankful that I’ve managed to keep my lung function stable and that in between all these bouts of being unwell, I’ve been able to enjoy life and precious family time and have had so much wonderful support from friends.

Now we’ve arrived in January, I’m thankful and pleased I’ve managed to start another New Year feeling brighter and better again.

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Back walking in the park

With a New Year comes renewed hope. Hope that I can put all these infections behind me once and for all or at least for a while and hope that I still may be able to improve my strength and lung function and feel healthier.

At the start of the New Year, I returned to my Transplant Clinic for more tests and to see my consultant and we came up with a plan to try and kick start my health again and try and reduce the amount of infections I’ve been having to deal with.

The plan involves reducing my immunosuppression, which has been high since I experienced the acute rejection episodes. Immunosuppression that’s too high can cause infection and infection can lead to rejection. Immunosuppression that’s too low can also cause rejection, so it’s all about finding the correct balance again.

My consultant also suggested various vitamin supplements, which may help support me in becoming stronger, as all the series of infections has left me very vulnerable and weak to catching more. Most importantly, we came up with a physio plan too: physio always being a big part of recovery and the transplant process.

So with a new year and a new plan of medication, vitamin supplements and physio now well underway, I’m feeling very optimistic and full hope for this coming year. Like many others this January, I’ll be working hard on my exercises. For me, it’s on doctor’s orders and isn’t the typical ‘New Year’s Resolution’.

I’m working on a programme of gentle yoga and walking exercises with the aim of increasing my activity as I become stronger. It’s nothing new to me and they are activities I’ve tried to do over and over but I’ve kept being stopped in my tracks by infection before I could get myself strong enough. It hasn’t really been for the want of trying. It’s a little like when I worked on regaining my strength following transplant now and my consultant thinks if I can have a good run at all this, then my lungs may become even stronger and my breathlessness could ease a little.

My New Year hope is that I can have a clear run at building my health and strength back up properly and then I believe with that will come the chance to move forward this year with new experiences and new adventures. I’m off to a good start now and hope there will be plenty of them.

Here’s to a happy, healthy and adventurous 2018 and hello and happy January!