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.

Here’s to November

We start November and I feel that cringe deep inside about those long, cold winter months ahead and those shorter days and longer nights. I also have that fear of more bugs and hospital, which seem to have become a bit of a winter tradition in my life as much as Christmas is. As we move nearer to winter time, I find myself needing some motivation and inspiration to conjure up of all those good things about these darker months.

On the health front, I’ve had my flu jab and I’m on preventative measures to help my lungs over winter. I’m at clinic for checks every few weeks. I’m trying to keep fit, rest, eat well and avoid the bugs where I can. I know I’m as prepared and ready as can be, so it’s just a case of one step at a time and taking each day as it comes and fingers crossed to stay in good health.

As for the rest, the start of November has been such a pleasant surprise. It has been very cold compared to the milder temperatures we’ve had recently, but some of the days have been so glorious and sunny that we’ve wrapped up warm and been out and about in the countryside. We’ve been enjoying all what remains of the stunning autumn scenery – those golden trees and leaves against brilliant blue skies and fluffy, high clouds.

It’s scenes like this that have reminded me that the winter months can be just as much fun as those of summer and have me thinking of all the positive things to look forward to.

It’s lovely to dig out those warm winter coats and woollies, those snuggly scarves, hats and gloves in anticipation of cold, crisp walks with our dog, Ted. Those walks on a Sunday while a roast is cooking in the oven. The warm house and delicious smells when you return.

If you don’t want to cook, a country pub with a roaring log fire is hard to beat. I remember walking into a pub high up in the hills on our way back from Christmas shopping in Bowness last year. We were the first to arrive at lunch time and were given a huge welcome and told to sit by the fire – it was a perishing cold day. They piled more logs on the stove for us and we warmed ourselves while we waited for a delicious hot lunch.

Then there’s preparing hearty winter dishes for dinner, cosy dinners by candlelight and cosy nights by the fire with the curtains all drawn. The dog by my feet – or more often than not snuggled up beside me. Soft cosy clothes, socks and slippers. A cold and dark night is a great excuse to wrap up under a blanket in favourite chair and read or indulge in watching a box set or two. Of course, scented candles are a complete ‘must’ and that’s after a long pampering soak in a hot bath.

Then there are the glorious sunrises and sunsets to enjoy – the sunrises are late enough to catch a glimpse of when you wake up on a winter morning and the sun sets nice and early and well before bed time. Then the excitement of waking up to fogs, mists, heavy frost or snow – not so exciting if you have to go to work or travel – but beautiful if you can watch from inside and go about your day without the hazards to worry about.

Then there’s the glamour and glitz of ‘Strictly’ – now a recognised winter staple – the sparkly costumes, the fabulous dancing as we move through Halloween, Bonfire Night and towards Christmas.

Christmas – it’s probably the biggest most excitable thing looming as we step into November. November is the time I usually finish off buying all the presents and start the wrapping in readiness for December. I love a Winter Market or a Christmas Market. We’ve even managed to visit one already last week at Holker Hall and it was such a perfect sunny day – beautiful stalls with an assortment of wonderful goodies, warming pit fires, a live jazz band and delicious hot food and drinks.

I love the build up to Christmas – the anticipation, the preparations and then the actual festivities and day itself. Christmas shopping, Christmas carols, Christmas concerts and Christmas parties.

Well, I think I’ve found enough lovely things to think of for now to inspire and enjoy myself until January at least! What do you enjoy about the winter months?

Happy November everyone!

Pulmonary Hypertension Awareness Week 2018

This week it’s Pulmonary Hypertension Awareness Week. Pulmonary Hypertension (PH) is the disease I had that resulted in me having to have my heart and double lung transplant. A transplant was the only route left after having had all the end stage specialist medications available for PH.

Having my transplant has always felt like an aternative treatment for my PH – yes a drastic one and not a cure. It’s a treatment that comes with huge risks and swaps one set of medical problems for another, but it’s a treatment that’s enabled a much better quality of life for me and has given me five extra years with my family so far – years I just didn’t have when I was terminally ill and suffering with end stage disease.

PH is high blood pressures in the lungs, which eventually causes damage to both the heart and lungs. It is an incurable, life limiting and terminal disease, which impacts enormously on the quality of life of PH sufferers. It is also a very rare and complicated disease, as there are different types of PH, different causes and differing treatments according to type. Treatment is very specialised and the specialist medication can only be prescribed from one of eight specialist centres in the UK, which includes Great Ormand St childrens’ hospital, as PH affects babies, children and people of all ages.

It’s also one of those ‘invisible diseases’ in many cases – well no-one can actually see your heart and lungs like they can a broken leg can they? As it’s rare and invisible, it can be very isolating for a PH sufferer; it’s often misunderstood, often mistaken for just ‘high blood pressure’ and even most medics don’t understand it or its complex treatments. Hence there’s a great need to raise awareness.

PH can be very difficult to diagnose too, it’s often mistaken for other conditions such as asthma, it often takes a few years for a patient to be diagnosed properly. In my own case it took nearly fifteen years! I’d never even heard of PH, let alone its signs and symptoms. The signs and symptoms are listed on the poster below:

Why would anyone be bothered about understanding more about PH when it’s so rare and only 7000 people on the UK are diagnosed with it? Why would anybody even care?

Well, I wish I’d known all about it and heard of it. If only. It may have prevented me being diagnosed as being in ‘end stage’ disease and being given only a few years to live. I could have perhaps received the specialised treatments earlier. You never know what’s round the next corner and it can happen to anyone.

Also, as it’s an invisible disease, PH can be very isolating. People kept telling me how well I looked, they didn’t quite understand the real impact it was having on my heart and lungs and how severely it was affecting my daily life. Every time I ended up in a general hospital, it was terrifying too, as most medics had never heard of it or if they had, they had no proper understanding of the various types of PH and the specialised medications. Raising awareness, therefore, is so important.

PH will always be a part of my journey in life; a part of my story; a part of where and who I am today. Despite how awful and scary this disease has been, there’s been some positive things to come out of my journey with PH too. I think I’m stronger and richer for it in many ways. It’s given me a real appreciation to be mindful and live in the moment and not dwell on the past or the future, but just to live for today.

Most of all it’s brought me many new and long lasting friendships. It still does. It never stops surprising me, how many people touch my life because of PH. Then there is the kindness and goodwill of so many people that have helped and supported me to overcome so much. They still do. The medical teams that have supported me, both my PH and transplant teams have also become like second families and Royal Papworth, my hospital, is like a second home.

I always say that if raising awareness of PH helps just one person, then all the campaigning and every minute of raising awareness is worth it.

Five Years On…

I relax in the sunshine on a seat looking over the salt marshes and out to sea. I soak in the stunning view, breathe in and out deeply savouring the salty air deep down in my lungs. Those precious lungs – well precious heart and lungs, but lungs more precious and fragile than ever now as they take the brunt of every storm my body weathers since my transplant five years ago. I can feel the gentle sea breeze and mellow sunshine on my face. Birds are gathering for their journeys to warmer climates, but singing and twittering as though it’s high summer. Beautiful September sunshine on this the fifth anniversary of my heart and double lung transplant.

I remember a time I’d been here in Norfolk before, over seven years ago now. Rob pushing me in my wheelchair along board walks to the beach when I took the call to say I’d been placed on the active transplant list. We were on holiday at the time trying to make the most of life or what I might have had left of it. We were trying to make sense of a situation where I’d found myself terminally ill and been given only two years to live if I was lucky. At the same time, I’d been told I needed a heart and double lung transplant and that on average the wait for this operation takes two years. Three people a day were dying while waiting for a transplant. The odds felt against me and I had to prepare myself both ways – preparing to die and preparing to live. A confusing situation but survival was my only focus.

Then my mind flits to four years ago when we came back here again. It was the first anniversary of my heart and double lung transplant. No wheelchair this time, my health restored. I could walk for miles by now, my strength recovered. It had been an incredible first year since my transplant. Suddenly I could do all those things that everyone takes for granted – simple things like showering, pushing a trolley around the supermarket, driving and even ironing and housework. Just simple things and I would even pinch myself that it was all actually real; that ‘yes’ I had my health back and I’d been given the best gift of all – the gift of life.

Five years on now and I’m back in Norfolk with my family to celebrate this incredible milestone. As I sit here, I think of all the incredible things I’ve been able to achieve because of my donor. From first simple steps like taking a shower to living my dreams and being able to travel abroad again. I’ve visited New York and many cities across Europe, plus been on a mediterranean cruise and travelled on the Orient Express.

I’ve seen Sarah and Rose both graduate, establish their careers, then Sarah marrying and then, the best of all, the birth of my first grandchild, Freddie and now we have another grandchild on the way. This is so exciting for me, life always brings so much to look forward to. Every extra day I’ve been given is special in its own unique way.

Our plans this holiday have come unstuck a little as I’m actually struggling with parainfluenza virus and alongside that pseudonoma pneumonia that always flares and inflames my lungs when I’m fighting any illness or rejection of my new organs. With the support and help of my transplant team though, we’ve managed to make it here. I’m on intravenous anti-biotics and allowed to do them from home or where home happens to be this week, rather than being hospitalised – it’s not new to me, I’ve done this often now over these years post transplant.

Being immunosuppressed can bring its challenges. I’ve already been back to Papworth again since we’ve been here, because my longline stopped working, my veins are poor now, but they sorted things out and got me back on track to continue our special celebrations with family. I have the Transplant Team there to thank for getting me through thick and thin and being able to reach this five years post transplant mark.

While we’ve been here, we’ve already celebrated Rob’s 60th birthday and our 28th Wedding anniversary – more milestones to add to many. Every single one is special. Five years post heart and lung transplant feels a very special milestone in more ways than one. Only 50% of lung transplant patients survive five years and beyond – it’s always been my long term goal to achieve this and it feels a huge achievement given the struggles with my lungs over the last few years.

I stare out to the sea and know that I’ve been fortunate, not only to have received my transplant in the first place, but to be given all this extra time with my family and a second chance to experience so many new opportunities and challenges that life brings. The horizon spreads wide in front of me and it fills me with hope for so much more to come. Well there’s a new baby to look forward to next spring, that’s going to be amazing for a start…

There isn’t a day goes by where I don’t thank my donor and their family for my gift of life.

September

It’s difficult to have a favourite month, as every month of the year has something special to offer. There’s always something unique to anticipate as each month looms on the horizon: from the festive month of December and all the hectic preparations for Christmas, to the peace, tranquility and perhaps even snow of January; from the anticipation of lighter evenings and warmer days during those spring months and the sunshine, heat and holidays of the summer.

September has always felt special to me though. I suppose it starts back from school days and the start of the school and academic year being September. September always feels like the time for a fresh start, new learning and new beginnings even more so than January when we’re supposed to reflect on the past year and think about new resolutions for the year ahead.

September was the month when Rob and I chose to get married and the month when I received my life saving transplant, so it’s a month that culminates in celebrations for our family. If I could have chosen which month to have received my transplant, it would have been September. For me, it truly is a month of new beginnings; a month to celebrate life and all it has to offer.

I always look forward to the weather in September, it’s usually cooler after the heat of summer, but still mild enough to be out and about enjoying the sunshine and fresh air. We’re usually lucky during this month as we often have plenty of sunshine and it’s calmer and quieter after the busyness of the school holidays.

We’ve just passed the Autumn Equinox, where the astrological year is marked by the sun crossing the earth’s equator from north to south. This marks the beginning of Autumn, nights drawing in and cooler weather. The meterological year marks the beginning of September as the start of autumn. Whichever way the start of autumn is defined, September is definitely the month where summer somehow manages to gradually ease into autumn. The garden defines this: we still have plenty of summer flowers – annuals still happily flowering along until the first frosts hit, but then many flowers have turned to fruits and berries, ripe for picking and preparing for winter.

For me, September is the month that leads us to crispy autumn walks, cosy warm evenings by the fire, enjoying the last of the warmer weather and then digging out those warmer winter jumpers and clothes. The beginning of a whole new season to embrace.

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.