Happy January

Well Happy New Year everyone, or it’s probably Happy January now that all the festivities are long over and well behind us. I hope you all had a wonderful time and enjoyed a rest with some quiet family time.

For me, a New Year always brings thoughts of what may lie ahead and wondering what may be in store both for me and my family. A whole new fresh year waiting in front of you can feel so exciting.

We enjoyed a lovely December and Christmas and that’s partly because there were total zero hospital stays. Anyone who has been following my blog over the years will know that December or Christmas seems to guarantee a bed in hospital for me at some point. This has happened ever since I was diagnosed with Pulmonary Hypertension and continued on after my transplant except for the second year after my transplant. Eight out of the nine last December’s has been marred by this, so this year I can safely say two out of ten have now been hospital free and I am so pleased and relieved about this. Hopefully this is a sign the pattern is being broken. I hope so.

It has meant that I’ve had a strong start to the New Year, so I’ve been trying hard to keep as active as I can. It can be difficult with lungs that function at less then fifty per cent, but in colder weather it can be even harder, especially if there is a cold wind. I’ve been trying to get outside as much as I can though and walk at my own pace as far as I can manage. I see my walking as vital to keeping my heart and lungs as healthy and stable as they can be, so keep pushing this within my limits. We’ve had some beautiful January days and it’s always uplifting and good for the soul to see some sunshine and go for a walk outdoors.

We were in the Lake District in early January and were blessed with a couple of days of beautiful sunshine. We were able to get out and about with the cameras, taking lots of photos and enjoying all the magnificent views and some lovely walks. It was bitter cold, but it can feel refreshing and invigorating to wrap up warm and cosy and just go with whatever the weather is doing. The weather is also an excuse to warm up and rest with a hot coffee in cosy cafes and eat warm comforting food in a pub with a roaring log fire!

And New Year resolutions? I know many people use the start of the year to make resolutions. This year, I haven’t bothered, that doesn’t mean I don’t care about things and have lost interest or anything or don’t want to try anything new; in fact it’s the total opposite. I just want to keep on doing all I’ve been doing, which involves spending time with my family, catching up with friends, travelling and visiting places old and new, continuing our work with the Papworth Transplant Support Group and the hospital and keeping up my photography, reading, writing and working on my second book. The list is probably endless and being mum and grandma is a big priority for me nowadays, so not much point in adding New Year resolutions to my list of ‘to dos’.

We have lots planned over the next few months – it’s always great to have lovely things to look forward to. Before January ends we have Burns Night and Freddie’s second birthday celebrations, yes he’s going to be two very soon. Where has the time gone? Then we have more birthday celebrations and a family wedding in February. March is a huge month and life will change again as ‘grand baby’ number two is expected. Life feels very busy, busy, busy and seems set to continue so, which is just how I like it.

I was back at Transplant clinic last week, I managed to go the whole two months without needing to phone up and visit clinic, which has been a first in a very long time. We were all pleased with this, my consultant included. Everything is looking fairly stable and my consultant decided that my ‘winter’ anti-biotic nebulisers should become a permanant part of my daily meds rather than just for winter. It’s a way of keeping the incurable pneumonia in my lungs at bay and it does seem to be helping so far. I’m happy with that and very pleased things are relatively stable. I have to go back in another two months and they are arranging a few extra tests just to investigate the breathlessness further and ensure they are on top of things.

I think that’s all my January news so far, it’s been a little while since I’ve posted as I decided to have a little break over the festive period and cut back on the social media for a while. I hope you’ve all had a good start to the New Year and have lots of things planned and to look forward to.

Thanks for reading as always and Happy January to you all…

Autumn’s End

We’ve been so lucky to enjoy such a beautiful autumn this year and during November, I’ve been enjoying and savouring those last sunny days of autumn. There’s been so many glorious displays of colourful leaves both on the trees and on the ground.

The park looks different each day, as more and more leaves have fallen. Some fall gently like confetti on those still and sunny days and some have been blown away harshly on wilder, wet days. The trees are becoming more bare as we slide nearer to winter and the colder, darker months.

The landscape looks so different as the freshly fallen leaves cover the ground, there’s something special about walking in them, kicking them up in the air as you go. The flora in the woodlands has changed colours, now in its last flurry of golden browns and golds before much of it dies back and goes dormant for winter.

The low sunlight filters through the woodlands, illuminating those last snippets of russets, reds and golds. There are few leaves on the trees now as autumn clings on and we’re about to leave November.

Fields are still green, but the growing grass is slowing and the grass is wet and damp with mist and dew. The weather has turned colder and wetter this last few weeks, the skies grey and dull with mist and drizzle. The temperature has dropped and we’ve even had a few frosts. I prefer the cold frosts and a bright crisp day to the fogs and greyness of this late November. If it’s going to be winter very soon with the nights drawing in, hopefully we’ll have more bright, crispy cold days than those days when it doesn’t seem to come properly light somehow.

At least as we reach the end of November, and if there are grey, dull days, there’s the the glitz and sparkle of Christmas beckoning. It’s like a bright warming light in front of us. I already have my Christmas preparations underway. I usually start early having ended up in hospital seven of the last eight Decembers, I feel pressure to be organised ‘just in case’. I’m aiming very hard for a hospital free December this year and having just had a reasonable clinic, I’ve no plans to be back at hospital before January.

I’m established on preventative oral antibiotics and nebulised antibiotics to try and stave away the chronic pneumonia that keeps rearing in my lungs if I pick up an infection and to help with respiratory infections. So far, so good and I’m keeping busy with Christmas preparations and enjoying life while the going is good again. I’m also trying hard to avoid the winter bugs going around.

As we reach the last week in November, our family have already started our traditional run up to Christmas. We enjoyed our Papworth transplant group’s Christmas party on Saturday – the Christmas jumpers were out in force. On Sunday we went on the Santa Express at the Nene Valley Railway with all the family and little Freddie. It won’t be long before we’ll be bringing down the Xmas decorations from the loft and choosing the Christmas tree.

After a stunning autumn and great November, with Christmas looming there’s so much to look forward to as we head into December and winter.

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.

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…