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…

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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