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!