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.

Organ Donation Week

This week has been National Organ Donation Week here in the UK, so a special week to promote awareness of Organ Donation.

I’ve been deeply affected by transplant and organ donation now for over nine years and it’s a cause dear to my heart.

On Monday I was asked to do an interview with Heart FM radio for the South East. It was good to help and they played clips from my interview throughout the afternoon, so hopefully many people may have heard it and it may make a small difference.

It’s nearly time for the anniversary of my transplant and each year I think of all the wonderful things in my life that organ donation has given me.

This year’s highlight has to be the birth of our granddaughter, little Darcy. I wasn’t ever supposed to see her, but yet thanks to my donor, I’ve shared so many special moments with her already and she’s only 5 months old.

I’ve also been able to see my gorgeous grandson Freddie grow from a baby, watching all his first steps to toddlerhood. This year I’ve spent so much time with him and he chats away, his speech growing daily. We have so many lovely conversations together and make up our own games to play. Being a grandma is a wonderful thing and feels so special and such a privilege in my position.

We’ve managed a few breaks away to Norfolk and the Lake District with the family, which has felt so special too and given us many special and priceless moments to share. We don’t travel abroad any more, due to my health, but we continue to enjoy visiting the places we love and exploring all that’s around us. Sometimes we forget the beauty that’s right under our noses and don’t see it. I still feel appreciative of all that’s there to see and do, from simple things like watching the birds, seeing the flowers growing in the garden and just having a simple cup of coffee thanks to my donor.

Rob and I are still involved with our Transplant Support Group at Papworth, helping to support other transplant patients and working on projects with the transplant team. This will always be a cause dear to our hearts and feels important to us. Our hospital has moved premises this year, which has been a big upheaval and a time of uncertainty, but we are pleased that we now have a wonderful, brand new and state of the art hospital for my continuing care and that of other fellow patients.

I’ve also been enjoying a period of steady health after having had the pneumonia, sepsis and blood clot earlier in spring. Luckily my local hospital moved so swiftly and I’ve been able to make a good recovery with the help of oxygen.

Ted, our cocker spaniel, is also a big part of our lives. He will be nearly four soon, we feel like we’ve always had him and he just slots into our family life. He often comes with us on holidays and days out and just adores the grandchildren. Sarah and Oli have a new cocker spaniel puppy, Finn. He’s such a character and a live wire, but quickly becoming another established member of the family.

Thanks to Organ Donation we are living a pretty normal family life and appreciating all the good things. We’re busy with projects such as decorating and the garden too, just normal family stuff, but that is what organ donation is all about, just to enable us to have a normal and fulfilled life.

I’m still working on my next book too. If things had gone to plan, it should have been finished by now, but all my serious health issues of the last few years halted things and actually changed the course of how this story was going. I’m still working hard on it and have a first draft manuscript to work on now and I’m so pleased I’ve reached this stage.

However, I want to do a serious overhaul of this draft, as my situation health wise changed dramatically from my original plans and ideas and as it’s another memoir, I want to reflect the true essence of all that’s happened so my new book may help others in similar situations with declining health. So watch this space, it’s still a work in progress, but again I feel privileged I’m in a position to be writing and doing something I love.

Organ Donation is the greatest gift and it not only benefits the recipient, but the benefits ripples out amongst the recipient’s family, friends and community. There is no price you can put on it.

The law will be changing on organ donation from an ‘opt in’ system to an ‘opt out’ one. It doesn’t really matter which system is in place, it will be family who have to say ‘yes’ or ‘no’ if you were to be in the unfortunate position to donate your organs, so it’s most important to let your family know your wishes whatever way you feel about organ donation.

All I can say is that Organ Donation is the most wonderful thing and that me and my family are forever grateful to my donor and their wonderful family who said ‘yes’ at the most difficult time in their lives.

Thanks so much for reading 😄

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.

February

February seems to have come and gone with the blink of an eye – so different to January, which always seems the longest month of the year after all the festivities.

We celebrated Rose’s birthday at the beginning of the month and had a lovely trip to London to visit her and David and go out for lunch. We ususally drive to her flat in London, which makes it easier for me with my breathing problems and definitely makes it easier when the weather is cold as my breathing suffers more in the cold. It had actually been snowing the day before and was perishing cold.

A few weeks ago we visited the gardens at Benington Lordship, they open them every year, as they have a fabulous display of snowdrops. It’s always something I look forward to, as the days start to become a little longer. The weather had begun to change. It felt quite mild and the sun was out. The snowdrops didn’t disappoint and looked so beautiful. It’s always very uplifting to see them and feels like the start of the gardening and flowering season, with the whole year still ahead of us, days becoming lighter and longer and the sense that everything is starting to come to life again in the garden.

We went away to Nottingham soon after for a lovely family wedding, Rob’s niece’s. It was a beautiful wedding and the weather became surprisingly even warmer. We’d hired a cottage for us all and had a fabulous time.

Now we’ve reached the end of the month nearly and the weather has become even warmer, reaching up to 20 degrees in some places. Rob has actually mowed the lawn for the first time ever in February and the crocuses and daffodils are out in full bloom in the garden. Like many, I’ve been digging a few more summery things out of my wardrobe, but those big coats, jumpers and scarves and gloves are still out.

Last year’s February can be remembered for the bitter cold and the ‘Beast from the East’ storm and this year’s is going to be remembered for record temperatures and glorious sunshine. We started February with a little snow and we’ve ended with a beautiful early spring.

Wrest Park in Winter

January and February can be harder months for getting out and about. The weather can put us off, as it’s often very bleak and cold and days are shorter. It can be surprising how beautiful and different places can look at varying times of year. I like to revisit places throughout the year to see them in a different light and different way as the months and seasons change.

Wrest Park is a place we go to often, it’s an easy place for me to manage walking now I get quite breathless, as it’s fairly flat with good pathways. It’s very wheelchair and pushchair friendly, a great place to take our dog Ted and very child friendly when we bring little Freddie with us. There’s a great play area and a cafe where you can sit out. I like to sit outside, even in the depths of winter and bask in those snippets of sunshine and enjoy the fresh air. It can be very uplifting and I feel it’s important for my wellbeing both mentally and physically.

We have visited a few times this winter and it was a glorious sunny day when we went a few days ago. It looked such a contrast to summer, with frost lacing the ground and layers of ice over the water. There was an early morning mist, but the sun was breaking through, burning it away, which looked quite spectacular.

The birds were enjoying a good singsong as we walked through the woods and there were three beautiful cygnets ducking and dipping for food through the ice. A red kite kept on circling above us. And those first signs of spring – snowdrops about to open, trees in bud, daffodil shoots – all that promise of what’s ahead of us.

Winter time can be so underestimated, as there’s still so many beautiful things to see.

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…