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.

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 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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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!