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.

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.

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.

Blossoms and Blooms

May has arrived and along with it, some beautiful warm and hot weather. The garden has suddenly burst into full bloom and has transformed itself from a bleak winter garden to a garden rapidly filling with colour. There’s that lovely backdrop of fresh green and newly opened leaves on all the trees and shrubs too. Spring is definitely here now and I think we’ve even had a taste of the summer to come with the Bank Holiday heatwave.

The blossom trees are laden with flowers and the apple blossom tree is the fullest I’ve ever seen it. I don’t know whether it’s because of the weather conditions that it’s so laden with blossom or whether I’m just misleading myself after it’s felt such a long wait to see it after all the harsh weather and winter.

My health has taken a dip over the last month or so, with a chest infection, which then sparked organising pneumonia to flare up in my lungs again, so being on intravenous medication for a few weeks and mostly confined to home, the lovely weather we’ve had on and off has been a huge bonus. It’s been lovely to watch the garden change and come to life and hear the birds singing at their fullest.

Luckily, I managed to avoid staying in hospital and have got myself back on track again now. Attempt number five at the fundoplication operation had to be abandoned due to the pneumonia, so I’m now waiting for a new date to proceed. I just need to build my strength and fitness back up, so onwards and upwards hopefully again now.

It’s been so uplifting to enjoy some sunshine, warm weather and longer days and to be able to potter around outside and enjoy lovely barbeques and eating most meals outdoors. There’s so much blooming in the garden now: poppies, forget-me-nots, peonies, clematis, bridal wreath, phlox to mention a few. It’s hard to keep track as something new keeps appearing each day. May is such a spectacular time in the garden.

It’s still springtime too and there’s still that delicious anticipation of the whole summer stretching out ahead…

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…