The Gift of Life

I've been incredibly lucky to have received my life saving heart and lung transplant over three years ago and during those three years I've been able to see and do so many things. There have been big family milestones such as Rose's 21st, our Silver Wedding Anniversary and seeing Sarah and Oli get married.  This autumn I saw both our girls graduate. 

When I found out I was really sick before my transplant these were all future events that flashed through my mind . A myriad of pictures one after another whizzing in front of me; future dreams; dreams that I'd perhaps always taken for granted now slipping away in the face of illness. And then came the gift of my heart and lungs - the gift of new life for me and a gift that restored our family again. A gift that gave me back those dreams. 

Now our family has been given another new gift of life, our brand new baby grandson, Freddie, born just a few weeks ago. My dreams back then didn't stretch as far as this - I hadn't dared hope I don't think or dared to even wish for so much. Now every achievement, dream and wish has been surpassed with the arrival of Freddie. I cannot thank my donor or their family enough for enabling me to  see this moment and to hold my precious first grandchild in my arms. 

January

January and arriving with it another brand new year and leaving a previous one behind. January 2017 rings familar with January 2016 for me. I started 2016 waking up and in my own bed and feeling much better after arriving home late on New Year's Eve following nearly a month in hospital and a few months of being unwell. Bring on January 2017 and although I'd not physically been in hospital for a month, I'd been in and out of hospital and made many trips there due to being seriously unwell yet again for those months ending the year. So both times starting a brand new year with fresh new hope and resolve to recover and regain my health once again. And starting the year with an even bigger appreciation and anticipation for life and what this new year may hold.

I'd begun to feel a lot better and brighter during those immediate few days before Christmas. I didn't dare to hope that it might last and I might feel well again. But it did and I'm much better now following those two awful bouts of acute rejection and all that comes with it. The heavy treatment, the harsh side effects and the mental and emotional anguish that comes with knowing that my body doesn't want accept my new lungs. The not knowing which way things may go. Will the treatment work? Will things deteriorate even more? In this world of transplant things can spiral out of control so quickly. It's not an exaggeration - it's happened to friends - we've lost friends unexpectedly and we have friends still, who are battling hard at this moment to overcome the fate that rejection can bring. Organ rejection is challenging in every way and is physically, mentally and emotionally gruelling. 

So January 2017 brought respite and relief for me just in that I knew I'd turned a corner in this battle - that I felt better and stronger was a good sign and this week after a visit to clinic, the signs are still looking positive. The routine tests showed that I'm now stable, that I've overcome this setback for now,  that I've beaten these rejection episodes. I'm still not totally through it. My lung function has declined by 25% now, but there's still a chance and hope it may improve now I'm stronger and able to exercise properly again. My medication has been altered yet again to help matters, increases in some, decreases in others to try and maintain the delicate balances needed to prevent infection and rejection flaring. I've been given a steroid inhaler too, to continue treating and preventing the airway rejection. There's still more clinics in the next weeks and months to check progress. I don't mind any of this, as I count myself lucky to have got this far - to have been able to hang on to some reasonable lung function and to feel well again. It's been the best Christmas present and best start to the new year I could have asked for. 

My new year resolutions aren't big ones. Just going through all this has enabled me to re-evaluate things yet again. My priorities are to keep on working hard on my health, recovery and becoming stronger again. If I can keep my health, then I can work on my other resolutions. Rob had just retired when I fell ill, suddenly he became my carer again. Now in a new year we are starting off again with our retirement plans. More time together, more memories to make. We're expecting a new grandchild, so helping Sarah and Oli and spending even more time with family will be a big priority.

Then I hope to continue working with our Transplant Group at the hospital with our support group and the other initiatives we've been involved with. We set up the support group to help patients going through transplant and its ups and downs. It's strange as the tables were turned in those few months before Christmas and members of the support group gave me so much support, which helped me through the difficult parts. It was much appreciated and made me realise even more how vital it is to have a support network of people who understand properly and can share their own experiences to help each other. 

I've also recently become an ambassador for Papworth Hospital Charity and plan to continue to promote my book 'Life is for the Living' to help raise awareness of PH and transplant and funds to help and support these causes. My last big priority and challenge for this year, is to complete my next book. I've been working on it for a while, but have been stopped in my tracks over the last few months. So I've restarted the work on it now, purposefully aiming to complete my first draft.

They are all goals that are closely related to my priorities, things that have been ongoing already, but with being poorly again made me realise they are things that will always be close to my heart. The things I find important that give me a good balance in life. Time for family and friends. Time for important causes that have affected my life and time for myself through my writing. 

Wishing everyone a very happy and healthy New Year. I hope you have lots to look forward to, new plans and memories to make and that you're still sticking to those New Year resolutions whatever they are. For those struggling with their health, I hope the new year brings hope, strength and the opportunity to feel better. 

Christmas Concert

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. 

Purchase Life is for the Living

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. 

A Positive Day

It's been a really good day today as I felt well enough to visit the John Henry Newman School in Stevenage, where Rob and I gave a talk to the sixth form on organ donation, transplant, my book 'Life is for the Living' and the important work of Papworth Hospital and Papworth Hospital Charity. 

The school has chosen to support us in raising awareness of Pulmonary Hypertension and organ donation and help us raise funds for Papworth Hospital Charity during this autum. They are holding several events over the next few months, including a non-school uniform day, a book signing evening and a Christmas concert, which is fantastic. 

It's quite poignant that our first event today was at the beginning of November as November is the month when the campaign for raising awareness of Pulmonary Hypertension is launched - the rare and incurable disease I had that led me to having a heart and double lung transplant. Pulmonary Hypertension is high blood pressure in the blood vessels in the lungs, eventually causing damage to both the lungs and the heart. There can be different causes such as congenital heart disease, autoimmune disorders and, as in my particular case, it can suddenly just start for no apparent reason and is then known as Pulmonary Arterial Hypertension. 

Having been under the weather and still waiting on more tests, today had been another day that I'd been looking forward to and hoping I could still manage - one of those motivators to try and do something positive in between a time of what feels some uncertainty yet. It was a wonderful opportunity to speak to an audience of circa two hundred people about these important issues that are so close to our hearts. There was lots of interest, lots of leaflets given out and lots of discussion amongst the sixth form on organ donation. Our main message on organ donation was the importance of having that discussion with your family, so everyone knows what your wishes are. 

All in all a very positive day for us and the start of more activities and exciting things to look forward to in these next months leading up to Christmas. 

Summer Snippets

It's been a little while since I posted, mainly because I've been having some rest, recuperation and time out enjoying the garden and sunshine after a little health blip over the last month or two. As always I'm being very carefully looked after by my wonderful transplant team and it brings home how lucky we are to have our NHS and the specialist care it provides for us.  

Ted as usual has helped me keep my fitness up. I'm lucky our garden backs on to the park so it's been easy to take him on his walks knowing if I suddenly felt unwell I could soon be back home and safe. As I began to feel a bit better, we tried to find new places nearby, where we could explore for a change without travelling too far afield, and it's been totally surprising what we've discovered right on our doorstep this summer - lots of country walks we didn't even know were there. 

   

I've also been quietly busy writing a few more chapters on my next book, whilst enjoying the lovely sunshine and garden. In fact, although being unwell has forced me to stop doing some things, on a positive note it's enabled me to slow down and make a good start on my next book. It's all about finding the time to make that start with writing, so that's been a real achievement to get my new book well underway. And if I've not been writing, I've been busy catching up on my reading. I always have a never ending pile of books to read, so that's been quite nice and relaxing too. So although there's been things I haven't managed to do, there's been plenty of positive things to be getting on with. 

I've also been making plans for some other projects in autumn too - one of those is to be involved with a patient and public involvement panel at a university in Cambridge working with medical students. Yes - back in education, but in a very different way than I used to be. Every experience in life brings new skills though and it will be great to use my educational skills combined with my recent experiences as a NHS patient and hopefully put them to some good use. 

In the meantime, my current book 'Life is for the Living' is continuing to sell on Amazon and August has been a busy month. I've received quite a few encouraging messages from readers who've taken it on holiday to read - some even for a second time around. Every book sold helps towards raising awareness of Organ Donation, Pulmonary Hypertension and raising funds for charity. If you still  fancy a good holiday read or a late summer read for the garden, it's available on Amazon, both hard copy and on Kindle. (Links are on the side bar) I also had an opportunity to promote my book and the importance of organ donation on the local radio recently, which hopefully will help to raise more awareness.

Finally it's only a couple of weeks to our next Papworth Transplant Patients' Social and Support Group and we're busy making preparations. If you are a Papworth transplant patient - pre or post - then you are welcome to come along. Our meeting is on Saturday, September 3rd, 12 noon til 3pm and includes a buffet lunch, raffle and speaker. There'll be plenty of time for tea, cake and a chat too. We're hoping it's going to be another good one. 

 

Graduations and Babies

It's been quite a lovely week here in the Graham family as we have lots of good news to share. 

Firstly, both Rose and David have achieved firsts for their university degrees, so we were all really delighted and thrilled for them as they can now both move on with confidence to new careers and ventures. David had his graduation this week and it's been lovely seeing the photographs. 

Rob  and I are both really proud of Rose. I can always remember, hoping that I would see her complete her degree and graduate. Her graduation isn't until November, so I have that wonderful milestone to look forward to now.  It's something that I didn't expect I would ever see a few years ago, so knowing she's completed her degree and achieved a first is pretty special and we're already making plans for going back to Dorset when she actually graduates. More celebations to look forward to ahead. 

We are particularly proud of her as it wasn't so easy for her with the worries over my health. During her first year I was already listed for and waiting for my heart and lung transplant and I was often in and out of hospital and I know it was difficult for her being so far away from home worrying over what was going on. Then when she started her second year, she had to come straight back home on her first day back at university because I had my transplant call. She had to cope with me being in a coma for a while and the worries that came over my initial recovery. 

For me personally, it feels a big moment and another one of those special times where it makes me stop and realise how precious life is, what a miracle organ donation can be and it makes me feel even more grateful to my donor. We need to keep raising awareness of organ donation though, so that others can be given a second chance like I have. There are still around six thousand five hundred people waiting for a transplant, their lives and their families lives on hold while they do. 

We've also been keeping a secret for a while and have been bursting to tell everyone the news. This week we're finally allowed to share that Sarah and Oli are expecting a baby in January, so I'm going to be a grandma for the first time. We've seen the pictures of the first scan, which are pretty amazing and show so much more detail than I remember when I had my scans for Sarah and Rose. I'm so excited and again feel how amazing it all is that I've been given these chances. I'd always hoped for this moment and it's wonderful to have the chance to see the baby in the scan pictures, I can't wait for January now. Again, it all feels very poignant and I'm so thankful to my donor who has given me these moments. 

My book 'Life is for the Living' is still flourishing and selling and this week sales have topped over six hundred and fifty, which I'm delighted about. I hope that with this many sales I've been able to spread a little more awareness about what it is like to live with Pulmonary Hypertension and how important organ donation is. There has been some wonderful feedback and I know readers have been passing the book around to share with friends and help spread the word. Rob received a lovely text from a friend who had bought a copy for his friend who's a GP. He's now going to use the book when he trains new medical students. I think this text made my day - it's that thought that there are people out there who will now have a better understanding of what it's like living with rare disease and transplantation. 

A massive thanks to everyone who has helped me achieve this and bought, recommended or reviewed the book. I'm soon going to be able to make some more donations to the charities and support groups that are close to my heart and it's all thanks to you. 

Where have the years gone?

I remember packing the car up, stuffed full of cases, bedding, duvets, pillows, pots, pans...and all the rest. Taking my daughter Rose for her first year at University. Years of studying ahead. I couldn't really think beyond the four years she would be there, just hoped I'd see the day when it came. 

At the time I'd been waiting for a year on the transplant list and had been determined to travel down to Bournemouth so I could see where Rose would be living and where she would be studying. I thought I'd at least have a picture in my head and photos to remind me, should I not be fit enough to manage to visit again. 

I wanted to help her move in her halls of residence while I could still be mum. In truth I managed to help empty a few cases in between resting on her bed, while she and Rob lugged all her stuff up and down in lifts. I felt a little helpless as other parents where all carrying bags and boxes piled high while I was empty handed, but at least I'd been well enough to achieve what I'd wanted. Just to see and know where she'd be, see her settled in. 

We had to fit my wheelchair in the car somehow, plus a box load of boxes of bottles and phials for my IV meds. We had a lot of ups and downs with my health during that first year, but we also enjoyed many special moments in Dorset as we visited Rose. Fun times on the beach, exploring new places and making new memories. 

Rose returned for her second year and moved in a house this time, rather than the halls of residence, again. I just wanted to see where she would be living, help her move in her new home once again. I felt lucky to do this. I remember forgetting the spare pump for my medication when we'd driven half way there and we had to turn back. I knew I was deteriorating. She'd only been there two weeks and on her first official Monday of term, I had my transplant call. I couldn't see her before I went to theatre, which was hard and difficult for both of us. 

Then life changed, I recovered and improved, Rose spent her third year back home and undertaking a work placement, which gave us so much time together. When her final year arrived I was able to help move her in properly, do things as anyone else would. And now that year's ended, Rose has completed her degree. So much has happened in those four years, so many life changing things, so many new memories made. 

This weekend we visited Dorset again, one last moment with Rose there, before she left for good. Some more lovely memories as we walked miles and miles together, made new plans, walked Ted our puppy, his first visit to Dorset. 

It's been a wonderful thing to see and be part of, another wonderful milestone, another one of those firsts and a milestone for Rose too. I'd always dreamed and hoped I would see this moment and now she is back home again, university degree finished, waiting for results and starting a new future. 

It is thanks to organ donation. It'is thanks to modern science and a fabulous skilled transplant team. It is thanks to my donor's family and above all to my donor.