Friday, 23 December 2016
I love Christmas and there's nothing more special than decorating the house in readiness for the big day. We usually do this in early December in our household, so we can enjoy all the build up to the festivities - the twinkly lights, cosy evenings by a warm fire, present shopping and present wrapping. Then there's that final manic food shop, followed by the lovely peaceful feeling on Christmas Eve when everything is done and ready and the festivities are about to begin.
One of my favourite things is decorating the Christmas tree. Decorations, lights and baubles are brought down from the loft and as each and every bauble is unwrapped and hung on the tree a happy memory is triggered. That's why I love decorating the tree so much - every bauble represents a precious memory. Memories from long ago; memories from the year we've just enjoyed; memories throughout the years.
Here are a few of those special baubles and memories:
A special decoration I chose in memory of my donor, who has given me the chance of more Christmases to enjoy with my family.
A few decorations from Amsterdam after my first flight abroad following my transplant - something I never thought I'd do ever again.
Some memories of Christmas in New York, my second wonderful Christmas after transplant.
Some decorations bought at Papworth hospital, above, one that represents the new heart and lungs I received and below one purchased last year when I spent all December and Christmas in hospital there.
Precious memories of Venice and Prague - places we visited on a dream holiday for our twenty-fifth wedding anniversay last year when we enjoyed a stay in Rome, followed by a cruise to Venice and a trip of a lifetime on the Orient Express from Venice to Prague.
Those are just a few of those special memories that hang on our tree as we begin to celebrate another Christmas and another year we've been able to enjoy time with family and friends and special moments making new memories. We always remember those times with loved ones no longer here too and my donor and their family who have given me many of these special times to enjoy and yet another Christmas to celebrate.
I wish all my family, friends and readers a very happy and peaceful Christmas and the very best of wishes and health for the New Year.
Saturday, 17 December 2016
I'm thrilled that this week my book sales surpassed a thousand copies. It means that if each one of those books have been read, then there will be a thousand more people out there who may be more aware about Organ Donation and Pulmonary Hypertension. I'm also pleased as a writer that people are still buying both hard copies and the Kindle version and the book seems to keep on going from strength to strength. A big plus is that it has helped raise funds for charities and support groups close to my heart too.
Over the past few years Rob and I have been visiting the girls' old secondary school - The John Henry Newman School in Stevenage - to speak to the sixth form about organ donation and help them understand more about the issues surrounding it. This year the headteacher had read my book in the summer and invited us to speak again and also offered to support Papworth Hospital Charity by holding a non uniform day and a collection and chance to sell books at their annual Christmas Concert. We were delighted and excited about this.
The events managed to raise a grand total of £3600, plus we managed to sell plenty of books raising another £275 to add to the total. Rob and Sarah attended the concert along with Charlotte from Papworth Hospital Charity and it was an amazing evening. People were so kind and generous and I would like to thank everyone involved in organising everything and supporting us. I was very disappointed that I couldn't attend, but my health problems of the last few months are still ongoing.
I would also like to thank those of you who sent donations to Papworth Hospital Charity in lieu of Christmas cards. I've been really touched by your thoughtfulness and generosity. Rob was able to pass these on to the charity at the concert event and the £80 donations received brought our total fundraising for Papworth Hospital Charity this Christmas to £3995. This support has really given me a huge boost after what has been a very difficult few months and has meant December has been a big high to end the year on.
If you are looking for a Christmas present or that extra stocking filler then there's still plenty of time to purchase a copy of 'Life is for the Living' on Amazon or maybe you are settling down for the Christmas holidays and just fancy a good read to download. The Amazon link is below and remember all funds are for Transplant and PH charities and support groups.
A few comments re the book:
'Just finished your book, so touching. Your paragraphs on the 'letter' from your donor's family had me in tears...thank you for your wonderful words...' R
'It's a compelling read - the inside personal story not just of the medical issues, but of how you, Rob and the family felt about what was happening to you all. And you tell it beautifully. Inspiring is an overused adjective nowadays, especially in health matters. But yours is a truly inspiring book.' LM
A massive thank you to everyone who has supported 'Life is for the Living' this last year and helped both raise awareness and funds for important causes.
Saturday, 3 December 2016
Your outlook to life changes when you have had a life threatening illness and surgery and still live with fragile health. Family moments are hugely important to most people, but after events such as these, precious family moments suddenly become very intense, you strive towards them, enjoy every moment while they happen and value that you've reached yet another milestone and been able to make another precious memory.
Earlier on this year, Rob and I had the lovely news that we were to be grandparents in the new year. Sarah is expecting her first baby very soon in January. Who knows if the baby is early, it might even be a Christmas baby. If all goes to plan, this will be another massive milestone in our family life, another one of those moments that I will see all because of the kindness of my donor and their family.
I've already been able to see the scans of the baby and see and feel it kicking, again these are very precious and special moments for me and I value so much that I've been able to enjoy and experience them. Sarah held her 'Baby Shower' at weekend. It seems to be a popular thing to do these days and a good excuse for a get together with friends. We enjoyed a lovely afternoon tea, games and lots of chatter and fun. It was a real boost amongst the health issues of the last few months. It also had me thinking about being a grandma and about both my own grandmas and what they meant to me.
I remember as a young child visiting my father's mother on Saturdays - playing in the garden; running along to the nearby train track to watch the steam trains rush past and hoot - something very different from home; watching Doctor Who at tea time whilst hiding behind a cushion. I can remember her coming to stay with us and sharing a room with her as we hadn't enough space to give her her own room - endless chatter and excitement that grandma was sharing my room. Happy memories.
My mum's mum spent a lot of time with us, as she lived nearby - just around the corner. I was very close to her and spent hours with her while I was growing up. She lived next to my primary school - she would come and wave at us at playtimes. I would go to her house for tea after school. I've memories of us going shopping together every Saturday - she always used to treat me and we'd go for lunch in a cafe near the local market. I used to go to her house for lunch every Sunday until I left home. We had many special moments.
And my thoughts on being a grandma? It's hard to imagine being a grandma, as it only seems a very short time ago that Sarah and Rose were only babies and growing up. I'm only just getting used to my own children being adults. Suddenly I'm going to be a grandma. As a young child, I used to think my grandmas were old. I think most children probably think grandmas and grandads are old. Now I realise my own grandmas were probably only my age when I was little and weren't that old at all. I don't really feel old. I smile to myself, knowing my own grandchildren will probably think I'm old!
I'm looking forward to the baby's arrival and helping out Sarah if she needs a hand. It's really is going to be a new and exciting phase in our lives, especially since Rob has retired. We hopefully will have the time to be active grandparents. I'd like my grandchildren to have similar and precious moments that I had with my grandmas, give them the time and patience like both my grandmas gave me and make them feel special.
We are trying to be organised in time for both Christmas and the baby coming. There's still weeks to go, yet it may be imminent too, as we are counting in weeks now, not months anymore. We just hope for a safe arrival and a healthy baby and mum.
Tuesday, 29 November 2016
I went back in hospital on Thursday so that my Transplant Team could run some tests to see the how my lungs are doing and if they are recovering from the acute rejection and other problems that I've been experiencing over this last couple of months. They had identified two episodes of acute rejection, each being a different type. Yes, I'm finding out this 'R' word is a complicated thing now I have it.
I just thought beforehand, that the most common types of rejection were 'acute' and 'chronic' alongside a few less common types. Over the last few weeks, I've since discovered that there are different types within these types and that this 'rejection' thing is all a very complicated affair. I am not going to try and explain it all, as I'm just about keeping up understanding what is happening myself and my tests were all about checking to see if the 'rejection' had been successfully treated.
Prior to last week's tests, I'd had x-rays and a CT scan. These had also shown pseudomas, which have been identified as 'organising pneumonia' and some scarring on my lungs, which the cause is unknown. Unfortunately, I've been told that when a 'rejection' episode happens, and this is found in 'cell' changes within the lungs, for some lung transplant patients, this can trigger the pseudoma cells to start inflaming and causing problems too. Often pseudomas can be present, but don't cause symptoms. That was an added problem for me too.
After two rounds of treatment to try and control all this, I had my tests and the findings are very much a mixed bag. On a very positive note, the organising pneumonia has improved and looks better on my x-ray than it did; however my x-ray still isn't as clear as it was back in August. My lung function has stabilised for now, which is a huge positive; again, it isn't as high as it was back in August.
Unfortunately 'rejection' was still identified from the biopsies again, but as my lung function has held, my consultants are pleased that I've responded positively to the steroids up until now. On the whole, there are some very positive outcomes, but as the 'rejection' is still there, this needs to be addressed further, as does the scarring on my lungs. I'm going to have some further investigations to try and get to the bottom of things, so it's an ongoing thing for now.
It was decided not to give me more methylpred treatment, but to increase another one of my immunosuppressants instead and keep a higher steroid dose, so fortunately I was allowed home. I was relieved about that at least, as it gives me chance to try and recuperate and recover and see how I'm doing for myself now.
This has all felt a difficult couple of months and a lot of the time while on the heavy doses of medication and after some of the invasive procedures, I've felt unwell and not my usual self. There's also been a lot of very positive things going on at home, which have kept me motivated and given me good things to focus on, which have helped so much. I just want to thank everyone for their support to us all during this rough time - every single lovely message, card, email etc has really helped us through and still does.
To finish on a very positive note, today has been a glorious day and I managed to take Ted on a lovely walk all around the park. It felt wonderful to be back outside and well enough to be having a walk again and I'm planning to try this again now every day and build my exercise tolerance back up to those longer walks and twice daily walks that I was used to doing.
Tuesday, 22 November 2016
November is Pulmonary Hypertension Awareness Month and this week it is Pulmonary Hypertension Awareness Week in the UK. Pulmonary Hypertension (PH) is a rare, progressive and incurable disease. It is a serious condition that causes high blood pressure in the pulmonary arteries, which can severely damage the heart and lungs.
Unfortunately not many people have heard of it, so if you suffer from it, the lack of awareness can add to all the stress of the diagnosis and the battles you have to cope with on a daily basis. When you suffer from a rare disease like Pulmonary Hypertension, it can feel very isolating, as people don't understand about the disease and you are often misunderstood. Only circa 7000 people are affected by PH in the UK and it can affect anyone regardless of age or ethnic background. It is more common in women than men.
Pulmonary Hypertension is a very general term to describe this disease, but it is a very complex disease and really is much more than just 'pulmonary' and 'hypertension'. Indeed, it does very much involve 'hypertension', which is high blood pressure and with Pulmonary Hypertension it is a diagnosis of high blood pressure in the blood vessels of the lungs. When I suffered from Pulmonary Hypertension I must admit I used to become quite exasperated with this tag of 'hypertension', as people continually told me all about their high blood pressure problems and the tablets they were on for it, which is a totally different problem. Simple and straightforward high blood pressure can be extremely dangerous, but it can also be safely controlled by a few tablets and lifestyle changes and isn't usually a fatal problem unless it's undetected.
Pulmonary Hypertension, however is high blood pressure in the lungs and although it can be treated to try and stabilise a patient, it cannot be cured and it becomes progressive, damaging the blood vessels in the lungs, causing severe breathing difficulties and the heart to overwork until it begins to fail and it can become fatal. Treatments can be harsh, with difficult side effects and can include: oral heart failure tablets such as diuretics; targeted oral treatments to stabilise the high pressure in the lungs; oxygen therapy; intravenous medications and major surgeries such as operations to remove blood clots from the lungs, lung transplantation and heart and lung transplantation.
PH patients suffer with a range of symptoms such as breathlessness, extreme fatigue, dizziness, fainting, swollen ankles and legs, plus the side effects of varying levels of medications.
Take a look at the PHAUK website to find out more about the causes, the symptoms and the treatment of PH, as they are explained well and in depth on here.
Pulmonary Hypertension is no 'ordinary' high blood pressure, in fact when I suffered from it, my 'ordinary' blood pressure was perfectly normal. I looked perfectly normal and well a lot of the time too, as heart and lung failure isn't something that anyone can see. It's something that's happening inside you, only you know how fatigued and unwell you feel, people cannot see it. It makes it difficult for others to understand when they cannot see you are sick and it is a disease that is unheard of. That is why we need to continue raising awareness to help others to understand more about the complexities of this disease and the impact on a Pulmonary Hypertension sufferer's life.
My own PH journey was a difficult one, with many hospital admissions and emergencies, countless tests and monitoring; many complex medications including combinations of oral medications, inhalers and complicated intravenous medication; a two year wait for, and then undergoing a heart and double lung transplant. My transplant has given me such a better quality of life, but a transplant does entail a whole range of other medications and new medical problems to cope with. My transplant was because of PH and my transplant journey is very much a part of my PH journey.
When people say, 'You haven't PH any more - why keep going on about PH?' It's because PH has been a big part of where and who I am now. It's in my past, but has shaped my future. It's because PH is so misunderstood. It's because so many of my friends still suffer with PH. It's because we still hope for a cure for PH.
Part of the reason I wrote my book 'Life is for the Living' was to help raise awareness of Pulmonary Hypertension - to try and show others what it is like to live with a rare disease and undergo the varied steps of treatment as the disease progresses and the impact it has on a sufferer's life. Any proceeds from my book are for the charities that helped me through my journey and continue to do so, including the PHAUK, the charity that gave me advice, support and put me in touch with other Pulmonary Hypertension sufferers at a very desperate time in my life.
I will always campaign to raise awareness of Pulmonary Hypertension, because once I didn't know
anything about it. It didn't really matter to me back in those days. Why take the time to learn a little about any rare disease? Well it may just save a life - your own or someone else's or help you to understand what someone else is dealing with and going through.
I didn't know anything about PH and its symptoms once. Early diagnosis equals better prognosis. If only I had.
Friday, 11 November 2016
Coming out of hospital and home is always a big step - it's a step in trying to recover, complete the drug regime and hope it works its magic. It's a chance to take stock - be away from the hospital and amongst ordinary routines to try and work out what you can still manage, so you can gauge where you are up to. An opportunity to challenge yourself a little, but keeping a balance of what's sensible for your health too. Most of all it's time to try and grab some special times with family and friends and enjoy some better moments in the middle of all the chaos. And this last few days has been all about that for me and my family - simply finding my feet again, catching myself up, accomplishing small daily challenges and trying to enjoy all there is to enjoy.
There's been plenty to squeeze in and enjoy in between hospital visits over this last few weeks. Somehow or another all the hospital stays have managed to fall in between exciting events that are so important to us as a family. That's given me good opportunities to focus on positive things that are happening in our lives. Firstly, there was Sarah's graduation ceremony and I was so pleased to have managed that. The thought of being able to see my girls graduate was one of the things that kept me driven through all my long illness and transplant recovery.
This week we had Rose's graduation to attend and celebrate. This I knew would be a real challenge as I'd only just come out of hospital after being treated for yet another bout of rejection, that coming straight after increased treatment for the first round of rejection and organised pneumonia has left me feeling very weak, shaky and exhausted. We started drawing up a plan A, plan B and plan C on how I might manage to still be part of it, as I was determined to still celebrate and enjoy this special time for us. It was going to be trickier compared to Sarah's graduation, as it was being held in Bournemouth, would be a bigger event and would involve travelling.
In the end, we came up with a compromise to enable me to cope, but still be a part of Rose's special day. We decided that the actual ceremony would be too much to deal with. Firstly, there would be a lot of waiting around beforehand, followed by a few hours formalities, then photos and drinks receptions etc, which would be too much for me with how I am at the moment. Secondly, I'm so heavily immunosuppressed because of the rejection and there was going to be massive crowds of people, which isn't such a safe situation for me at the moment. The ceremony was an afternoon one too, so it meant I'd have to manage the whole day plus eating out afterwards somehow. To try and do it all would have been too difficult.
So we decided to cut out the middle bit for me; sometimes it's a needs must and making a few sensible adjustments means you can still enjoy everything and be part of it and not miss out on everything.
We had a good journey down and had a lazy evening with TV and pizza in the apartment we'd rented - home from home and lovely family time. In the morning, Rob and Rose went off to the university to pick up Rose's gown. Then everyone got dressed up and ready and I was able to see her all gowned up and we went down to the gardens on the seafront to take some family pictures. Everyone then went off to the ceremony and this gave me a few hours to rest up and take my time to get ready to go out for the meal we'd planned for evening. All afternoon long, the family sent me photos and videos as each part of the event took place, so I could see everything going on and not miss out on the fun.
In the evening we went out for a few hours for a lovely meal together and I had a wonderful time celebrating with everyone and it felt fantastic to be well enough to go and be out and about a little at last. It all felt a little surreal and very special to be sat eating in a lovely restaurant with my family, when only a few days earlier I'd been ticking off my breakfast, lunch and dinner charts back in hospital!
The following morning we travelled back home a day earlier than planned, so I could have more chance to rest up before another lovely event with friends - Bernice's wedding to Scott. Bernice had a lung transplant three years ago and we became friends while we waited for our transplant calls. We had shared our journeys together and with other friends who were going through similar at the time. We've all remained good friends and Bernice's wedding was always going to be such a special event after all she has overcome and it's all thanks to our donors that we can celebrate such a wonderful milestone in Bernice's life together.
All in all it's been a very special and uplifting week. Happy times!