Six Years On

September 2013

6.30am The phone rings and I have that feeling that this it, the transplant. I shakily answer and the transplant coordinator confirms my thoughts.

I remain calm, gather my things together and am ready for the ambulance. Rob is in panic, frantically trying to get hold of our girls to no avail.

7.30am The ambulance arrives. I take a call from Rose down in Bournemouth as I clamber in, tell her I love her. I don’t even know if I will ever see her again, knowing you might be having your heart and lungs removed that day is a terrifying, daunting and most frightening thing.

I focus on the task in hand, say goodbye to Rob as he puts bags and cases in his car to follow us. I take a deep breath and take what could be my last long lingering look at my home. Will I be coming back today? Will I ever come back?

8.30am I’m greeted by the transplant coordinator and told if all is good on the final examination of the organs, then they will be mine and they’ll go ahead with the transplant. Meanwhile two other patients have been brought in, just in case the heart is no good and they can still use the lungs, or the lungs aren’t viable, so they can use the heart. Hopefully someone’s life is going to be saved today. Will it be mine?

10.30 Sarah arrives to be with us. Oli is on his way to Bournemouth to pick up Rose. The transplant coordinator keeps popping in, so far, so good. We wait and wait. I’m not allowed to eat and drink.

12 noon It’s still looking good. A doctor comes to see me. I sign all the consent forms again, as he talks me through each one. I’ve already signed these when I went on the list in case of emergency, but good to go through it all again perhaps. I’m told to get ready, gowned up and given my first immosuppression medications, but we’re still waiting for those final tests.

1pm It’s a go, I’m wheeled down to theatre in a chair wrapped in a warm blanket, Rob and Sarah follow me and we say our goodbyes. I’ve gone into autopilot, I cannot think about any of the ‘what ifs’. I’m just ready to put myself into the lap of the Gods and the surgeons.

10, 9, 8, 7, 6, 5, 4, 3, 2, 1… I count down as the anaesthetic takes hold…

September 2019 Norfolk

6.30am I wake to the sound of pattering tiny feet coming down the stairs. Little Freddie comes bursting into the bedroom shouting, ‘Grandma, grandma!’ He clambers by my bedside and holds out his arms to be pulled up in bed with us. We make up games and play, no chance to be half asleep, he’s wide awake and raring to go for the day.

8am More movement upstairs, some loud gurgling from Darcy, soon Sarah arrives in the bedroom holding our gorgeous granddaughter in her arms. Darcy beams us the most beautiful smile. Freddie goes with Sarah to have breakfast and we enjoy cuddles with Darcy next.

9am We’re all up and about, all of us here together again, six years on. Six whole years, a long time ago, but so fresh in our minds. Rob, me, Sarah and Oli, Rose and David – all together again. Plus we now have Freddie and Darcy our little grandchildren and we also have Ted our much loved cocker spaniel and Finn, Sarah and Oli’s cocker spaniel puppy. We’ve grown in numbers since that day six years ago.

10am We are all together having breakfast, sat round a big table in one of our favourite Norfolk pubs, babies, dogs and all. We chat and laugh and joke and it’s so good to be away on holiday and all together for this special weekend. Rob and I celebrated our 29th wedding anniversary yesterday, today it is six years since my life saving heart and double lung transplant and tomorrow it will be Rob’s birthday.

We have seen so many family milestones, enjoyed so many special times together and life has progressed so much and moved on for us all. We are celebrating life today, all our lives, my life and my donor’s life. We are forever grateful to my donor, their family and the staff at Royal Papworth Hospital for making all of this possible.

And that is the power of organ donation.

Beautiful September

September is always such a beautiful month as the summer quietly slips away and we begin autumn. There’s those last hot days of summer, but the days are shorter and you can feel a nip in the air when there’s a breeze. The sun is lower and the light seems to give off a richer and deeper glow.

It’s a time of new starts for many with school, courses, hobbies, university and work resuming after the summer break. For some of us that don’t go out to work, it’s a time of quiet when the summer crowds have disappeared and the weather is still pleasant enough to enjoy the surroundings, go on holiday or out and about locally.

September is a time when many of the flowers and plants in the garden have finished flowering, but also a time when the most vivid and colourful autumn plants can give spectacular displays and a riot of colours. Fruit trees are laden with fruit ripe for picking too. We have apples and blackberries ready for picking in the garden. It makes me think of cooking autumn and winter comfort foods, baking crumbles and making sauces.

It’s always a month when the days seem to draw in faster and faster after the long days of summer, but with that comes the beautiful sunrises that greet you as you wake up and more chance to catch a glimpse of a beautiful sunset in the early evening. There’s always something so special about a beautiful sunrise or sunset that makes me just stop and stare.

September is a very special month for me. It’s the month when Rob and I chose to get married and we celebrate our wedding anniversary at the end of the month. September is always a reminder of our new start in life together all those years ago, nearly 29 years now.

It’s the month, also, when I received my life saving heart and double transplant, the gift of a new life and second chance. This will always make September a very special month for our family and a poignant month to reflect on what a very special gift life is, a month to celebrate life and all it has to offer. It’s also a time to feel grateful: grateful to my donor, who gave me a new life; grateful to their family for agreeing to organ donation and always forever grateful for life and the chance to keep on living it.

September is such a very special month, always a month of new beginnings.

A Little Catch Up

It’s been a little while since I’ve been on here, so this is a little catch up post.

I’ve had a few ups and downs with my health since February including a serious incident with sepsis and a pulmonary embolism, which landed me hospital for a while. Then, as I was recovering from all this, I had a couple of pneumonia infections following just picking up simple colds, so it’s been one step forward, then two steps back.

There’s had to be a lot of laying low and rest and recuperation, but in between we’ve also had some lovely family times and best of all celebrated the birth of our beautiful new granddaughter Darcy. I’ve been concentrating hard on getting better and spending time with my family and especially my gorgeous grandchildren. They are so important to me and with my fragile health, even more so.

My medications have been stepped up considerably since last autumn, including antibiotic nebulisers twice daily to try and help prevent the respiratory infections and blood thinners to help the blood clots in my lungs and prevent any further clotting. We don’t know where the clots came from, so the blood thinners are permanent. I’ve also been provided with both home and ambulatory oxygen to help my breathing, just as and when I need it. So I’m seeing how I get along with all of this now and if it helps. We feel the nebulisers have helped, as although I’ve picked up colds, I’ve mainly managed to stay off intravenous antibiotics and stayed out of hospital just on oral antibiotic medications, so I’ve been pleased with that.

We’ve been trying to make the most of all the times I’ve been well, getting out and about with the family when the weather has been good and enjoying life to the full. We have had many lovely times in between the mishaps and we have some lovely things planned for summer. I’m keeping fingers crossed that things are on the mend now and I’m having a lovely steady spell where we can just enjoy the summer and all it brings.

Thanks for reading and I hope to be back blogging more regularly now things are much better. Wishing everyone a lovely summer.

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.