Wednesday, 27 August 2014
This weekend it will be eleven months since I had my heart and double lung transplant. The last few weeks have been lovely and peaceful and hospital free and we have been able to have our usual summer holiday in the Lake District.
We usually holiday here for a few weeks every August and although the last four or so years have been challenging ones we have somehow always managed to get away. It never mattered how limited I was, we've always tried to enjoy ourselves and just adapt what we did to what I could cope with. I'd accepted really that I was ill and was trying to deal with it as best I could. Having a transplant was always a light shining on the horizon, but it always felt after waiting so long that it would always just stay shining out on the horizon and wouldn't come to me. The future was so uncertain.
This year's summer holiday has been extra special though, as I am well again now and it is hard to believe after all that's happened that I'm suddenly well again and I'm able to do all those things I used to do before I was ill. I think of all those recent previous years and I never really ever knew deep down that I would be able to go for long walks again or simply just wake up feeling well or have the energy to stay out for hours on end when it's a gorgeous summer's day. I'd resigned myself to the fact that I'd probably not get better.
I didn't ever even allow myself to dare hope that I may get better, although I wished for it at times. I was scared of being disappointed and thought it better to make the best of how things were at the moment in case my health deteriorated even more. There were also heavy risks involved with having a transplant, so the future always felt daunting and it was better not to think of how things may turn out, so I tried not to and tried hard to live in the moment.
That is why the holiday this August was so special, after all that has happened since last August, it is incredible how things have worked out and after years of struggling health wise, to feel well again feels nothing short of a miracle.
Every day feeling well is a bonus.
We have been able to enjoy ourselves properly and spend some wonderful time with family and friends. My family and I are still in awe of what has happened and we think often of my donor and their family and the new chances in life that they have given to our family.
Coffee at the Swan Hotel by the river Leven at Newby Bridge.
Early evening on Ullswater
Wednesday, 20 August 2014
We always spend some time up in the Lake District during August. This year we were a little delayed in getting there while I waited for my blood test results following my change in medication. I didn't want to be a long way from home only to find that something wasn't quite right and then we needed to go back again. We've got used to doing this though and just being more flexible and relaxed, better to be safe than sorry.
It is always a worry if things will still be steady as my medication has been changed so much recently and I was worried as it was my immunosuppressants that have been reduced this time. The word 'rejection' is a scary one and I needed to feel satisfied that all is settled again. I think it will be there in the back of mind until I'm next back at clinic in four weeks time, then I will really know properly that all is settled.
You have to learn to place a lot of faith and trust in the Transplant Team and stop worrying about things. In the meantime between clinic visits I'm always vigilant about checking my weight, temperature and lung function every day as I was taught to do at the outset, then I can pick up on any signs of rejection and infection. It is the lungs that is always the main worry for me as they are always so open to infection and this can set off chronic rejection.
As I waited for the all clear on my blood tests, Rob started experiencing a lot of pain and discomfort in his stomach, it looked like it could have been an appendix - his symptoms were just like those Sarah had when she had an appendicitus recently - so it was doctors for him too. The doctor was fairly sure it wasn't this, but gave him antibiotics and said if it was an appendix then it would get worse in the next few days and to come straight back. So we decided to stay home for a few days until we knew everything was fine.
While we waited, Rob's symptoms started to ease and we decided to start our holiday anyway, but just down here instead - we decided it doesn't matter where we are as long as we are enjoying ourselves - and we had a lovely afternoon out at Hitchin Lavender farm as the sunflower field was in flower and I wanted to see them and take some pictures.
It is a beautiful old and well preserved 12th century building that you can look around, with some pretty gardens, farm animals, shop and cafe. We spent a nice morning there.
When we got back from Lancashire and visiting mum we enjoyed the rest of the week getting out and about in the fresh air in the Lake District. We tried to pack it in and do as much as we could and the weather was good - nice and sunny, but not too hot for some good walking. I can do so much more without getting tired out now, so we are able to stay out for longer and don't have to worry about making up IV medication anymore - my lovely array of tablets just come with us nowadays!
We enjoyed a picnic by the river in the Duddon Valley and then drove up to Devoke Water, a remote tarn in the Western Lakes. You cannot drive to this tarn, you have to park up on the moors and then take a walk to it. It is somewhere I have never been before, but always wanted to go, but couldn't because I wasn't able to manage the walk anymore. It felt fantastic to be able to do this and well worth a visit as the view of the tarn is stunning.
We visited Wast Water too, as we were quite nearby then drove back through the mountains and fells enjoying the scenery. We were out from mid morning until later on in the evening. I just wouldn't have managed all this pre transplant and cannot quite believe I can do this much once again and how much I've managed to get better.
I also spent an afternoon doing a walk I haven't managed for years, we used to do it when the girls were younger and it's a walk that takes you by the river Bela and across the farmland on Dalham Estate near Milnthorpe, then you walk through woodland and by the river estuary. It's a walk of about four and a half miles or so and in some parts it's quite steep. At least a mile of it involves climbing up a steep hill.
I haven't managed a decent walk down here for years, let alone even thought about trying this one. It is a walk I really thought I'd never do again, but I was always glad I'd done it as the views are beautiful. I couldn't quite believe I had managed to do this once again, it really did feel exhilarating once I made it up the hill and looked down on the view.
Completing this walk has been another one of those special moments. There have been many of them now and they just seem to keep on coming and coming.
This week has been yet another really good one.
Tuesday, 12 August 2014
It's been another busy week. We had a great weekend when my sister and her family came to stay and we spent some time at Knebworth Park where they have a sculpture display in the gardens, a dinosaur trail and an adventure playground. It's a really good place to take the children and keep them entertained while we have a good time too.
It felt great to be able to wander around the grounds and trail with everyone and actually keep up with a 4 year old and an 11 year old - well nearly - as you will see from the photos they are very active!
There were some interesting sculptures plus a few dinosaurs lurking in the bushes!
We had a bit of fun in the adventure area, but I decided to give the slides a miss, although it did look like good fun and I was half tempted! Maybe another time!
The best thing was that it had been quite a stormy and wet day and we only went when the weather had cleared up and it was later in the afternoon. It was lovely and quiet and we had the place to ourselves more or less, so there were no crowds or queues for anything.
Wednesday and I was back at Papworth for my blood tests to check that my change in medication is going ok and that my white blood cell count has improved. The policy is that you have the bloods tests done and then if they need to make any adjustments they phone you. If they don't phone within the next day or two you assume that everything is fine. They didn't phone so I'm assuming I'm all back on track and shouldn't need to go back now until the end of September, which is good news.
When I arrived at clinic, the transplant co - ordinator was waiting to see us and we were both surprised and delighted to receive a letter from my donor's family. Clinic was busy and there were no quiet rooms available were we could go and read it, so we went down to the lovely little quiet room next to the chapel. It is where Rob and the girls used to go for some refuge when I was in ITU. We had some peaceful time there to read it. It is a very moving and beautiful letter and we will treasure it.
After learning more about my donor, I know she was indeed a very special person, but I think I'd somehow always known that. It is thanks to her that I've been able to do and achieve all the things I have this last year and enjoy these special times with my family.
Wednesday, 6 August 2014
The sun feels like it has been shining for ages (probably in more ways than just literally) and I don't think I've ever spent so much time out in the garden enjoying those warm balmy nights.
The feature on my transplant story and seizing the day has now been published in the latest issue of Woman and Home magazine. They are also advertising their reader event 'Seize the Day' on October 29th. I'm really excited about this as I've been asked to be on the panel to talk about my story and making the most of life. Other speakers are Sherrie Hewson from Loose Women and Benidorm fame; Carole Ann Rice, a motivational business and life coach, who is also a best selling author and columnist; Kathleen McGrath, a sleep expert, who set up the Medical Advisory Service, which provides a helpline for insomnia; Linda Bartlett, another reader who completed the 3 Cities Cycle challenge from London to Amsterdam with little cycling experience before training.
The magazine, although on sale now, is the September issue and there is something very apt about that as it is the month of my transplant. I'm looking forward to meeting everybody and enjoying a great evening and yet another experience I never imagined I would have.
Following our trip to Downing St, we spent a lovely afternoon and evening in London, enjoying the sunshine and the vibrant atmosphere along London's Southbank. It was very colourful, busy and lively. I got chance to browse round my favourite bit, the second hand book market and even 'War Horse' put in an appearance down by the National Theatre. It was a lovely end to a hectic week.
Then it was back to my 'other life' - doctors and dentists and hospital appointments for Monday, Tuesday and Wednesday! So back to earth with a big bump. I was back at transplant clinic on Tuesday and everything was looking good. My lung function is still high and my chest x rays were good and clear. It is always a relief to have reassurance that my new heart and lungs are still doing fine.
Apparently when I had all the trouble with my mouth a few weeks ago it was because the myfenax drug had lowered my white blood cells and I had become neutropenic. This is being monitored closely now and although the myfenax was stopped for a week, it was restarted and I have to have my dose reduced now so it doesn't keep happening.
My blood tests were still showing that my white cell count is too low and this makes me even more vulnerable to infection at the moment. I've had to restart another drug again, valganciclovir, for a while just to try and prevent the problems with my mouth recurring again too. I'm having to go back to clinic in a week's time just to have my bloods checked once more and make sure I'm properly back on track and that my white cell count has improved.
I was also given the good news that my PH tests for my stomach all looked normal so I don't need to have the stomach fundoplication operation. That was a huge relief and weight off my mind as I didn't really want to have to have this done so soon after my transplant and when I already have to have some other surgery soon. I've also been back to the local hospital to see the mouth consultant and they are happy to discharge me now.
The transplant consultant explained that if all continues going well I should be able to go onto three monthly visits to clinic soon as long as my medication is settled. I will soon be a year post transplant and there will be a lot of emphasis on taking preventative measures for longer term problems that are very likely to arise such high blood pressure and loss of kidney function.
So ten months on and I'm delighted things are still going really well and I'm still always thrilled and surprised at what I'm managing to do and some of the opportunities that have come my way for some new experiences.
There have been some very special moments during this last month, but it is still those simple basic things that shock me when I realise I am doing them without thinking about it or struggling. Take for instance when we visited Downing St last week. There was quite a group of us going up those famous stairs with all the portraits of the Prime Ministers on the wall. Everyone was a bit in awe of them and admiring them, but all that was really going through my mind was, 'Oh my goodness I'm climbing up the stairs really quickly!'
Sunday, 3 August 2014
On Thursday we were invited to attend a media event for the '100,000 Genomes Project' at the Sanger Institute in Cambridge. This was because some time ago I had had some genetic testing done and had also given a sample of my DNA for a genetics research study of PAH, which is presently being undertaken by Professor Morrell, Head of the Cambridge Centre of Research Excellence.
This project involves sequencing the entire genomes of 1,000 patients with Pulmonary Arterial Hypertension. They hope to discover the entire inherited basis of PAH and establish the frequency of all known genetic mutations that are responsible for the condition. There is hope from this work that it may be possible to introduce a screening programme that can identify those at risk, provide better information and reassurance for families and also identify new ways to treat the disease.
The '100,000 Genomes Project' is a project backed by the Prime Minister and is being delivered by Genomics England, a company wholly owned by the Department of Health. It has been set up to deliver the sequencing of 100,000 genomes from NHS patients with rare diseases and cancers by 2017. It aims to bring benefit to patients and set up a genomic medicine service for the NHS; to enable new scientific discovery and medical insights and start the development of a UK genomics industry. Genomics England are working in partnership with Illumina, who will deliver the infrastructure and expertise services for whole genome sequencing.
We arrived and were warmly welcomed by the team from Genomics England and we were ushered to the lecture theatre where the project was explained in more depth to us by Sir John Chisholm, Head of Genomics England and the newly appointed Minister for Life Sciences, MP, George Freeman. We were then shown around the research labs and it was explained how the genome sequencing machines work. By this time we had been joined by a television crew, who were filming for all the major news stations.
There were two other patient representatives, who had also been involved with genetic testing for other rare diseases and we were each interviewed about our stories and what genetic testing meant for our families. I explained how we had had our minds put at rest because it had been found that I did not carry the two main gene mutations associated with inherited PAH, which means that it is highly unlikely that Sarah and Rose will develop PAH. I had idiopathic PAH, so I'm always trying to make sense of why I might have got it.
I also explained how giving my DNA sample for the PAH genetic research is still important to me, because the research will hopefully lead to a better understanding of the disease and hopefully better and more focussed treatment for both PAH patients and patients who have PH for secondary reasons. I explained how the PH community had a lot of hope for patients getting an earlier diagnosis through better genetic knowledge; how I hoped future patients would not be faced with having to take intravenous medication or having to make life threatening decisions about whether to undergo transplantation and also how the research may give more hope to those who haven't got the option of transplantation.
We were told the news reports would hopefully be on all the main news channels on Friday, when there would be announcements from 10 Downing St about the '100,000 Genomes Project'. The project was moving into a new phase as contracts were being signed at Downing St that day with Illumina, who are providing the infrastructure and expertise services for the whole genome sequencing process.
We were also invited to 10 Downing St to this event, which is set to revolutionise the future treatment of patients and make the UK's NHS become the first mainstream health service in the world to have genetic medicine as part of patient's routine care.
We put on the main news on Friday morning and didn't really know which one to watch, as the story was running on every channel! We found we were on BBC and Sky main news. Then we had our local radio station trying to interview us and Anglia News! It was busy and telephone signals were bad as we were in London. In the end we managed a telephone interview with the radio.
It was exciting to arrive at number 10, we have never been there before, only on the other side of the railings peeping through! It was wonderful to have been invited to attend.
We were well looked after at both events and were introduced to and chatted to many others attending including: other patient families, Genomics England and Illumina staff, Life Sciences Minister George Freeman, Chief Medical Officer Dame Sally Davies and Sir John Chisholm.
George Freeman, Minister for Life Sciences hosted the event and contracts were signed between Genomics England and Illumina ready to launch the next phase of this exciting project.
We were also lucky enough to have a tour of Downing St too. We weren't allowed to take our mobile phones with us or take photographs, but we had a professional photographer who accompanied the party for the event and therefore we've got some super photographs to mark the occasion.
News Links featuring me and Rob:
BobFM Herts and Home Counties
Sky news 31/7 (video)
ITV Anglia News (video)
Other Relevant Links/ Reports
ITV News 31/7
BBC News 31/7
Genomics England Website