One Year On

 

It is a whole year now since my transplant and we are spending this time quietly enjoying ourselves together and reflecting as a family.  It's been one amazing year not only with the incredible changes in my health, but also how we've been able to move on and get on with all of our lives once more. We have also had some amazing opportunities that have come our way to try and keep on raising awareness of PH and organ donation. 

Rob has managed to get back to work. He has decided to continue just part time, so that we can also enjoy precious time together and he also helps me with going for all my hospital appointments and all the opportunities we get to promote organ donation and PH. He always says he will never forget where we have come from, although we now have our lives back.

Sarah and Oli have both been promoted at work, have bought their own house and have got engaged. We are planning and looking forward to their wedding next year. Rose and David have both successfully completed their second year of university and have now both started work placements near home for their next third year. 

For me, this year has been completely life changing. As I got better and better I've been able to start doing things for the first time again, things that I thought I would never do again. Many of them are simple basic things that we all take for granted. Things like going for a walk; pushing a supermarket trolley; doing the ironing and even bathing and showering. I even find myself running every time I go upstairs just because I can. I don't think I will ever be able to take these things for granted ever again. I've got my independence back once more after years of relying on other people. I'm still finding I can do more and new things too. 

We've been given numerous opportunities to promote PH and organ donation and had some amazing experiences through doing so, from being on national TV and radio to photoshoots and makeovers, having our story in national papers and magazines and local ones too. We even got to visit10 Downing St. 

I'm working hard on writing my book now, which is keeping me busy and Rob and I have already got a couple of events organised in October to talk about PH and organ donation. I've been busy with my writing course and have another article being published in 'Cumbria' magazine soon. We've also both joined the Transplant Patient's Representative Group for the new Papworth Hospital to try and ensure that we can maintain the high level of ongoing care when the hospital moves to its new site, so that is keeping us busy too. 

The year has not been without some ups and downs, there is still more hospital for a few ongoing issues following my transplant and for ongoing care, but these pale into insignificance compared to what we have been through over the last few years. 

We have also seen some of our friends having to face very difficult times: friends struggling with their PH and friends having to endure too long a wait on the transplant list. We can only hope and pray that things can get better for everyone: that there may be a breakthrough to help treat and cure PH and that our friends get their calls for their transplants sooner, rather than later. This is why we try and take as many opportunities as we can to promote awareness of both organ donation and PH. 

We have also sadly and very tragically lost several friends during the past year too, which has been heartbreaking for all in our PH and transplant communities and devastating for their families. I don't think we can ever take life for granted and losing friends so tragically brings it home to us all once more how precious life is, how time with our loved ones is so very special and how lucky we are. 

Coming together as a family this last few days we have been able to celebrate my second chance at life and how we have been so lucky. That brings me finally to the most important person we are all thinking of on this very special day, one year on from my transplant, my wonderful donor. Tragically, September is always going to be a most difficult time for the family and especially today. There really are no words that we can say that can ever thank my donor or their family, we only hope that the legacy she has left for our family and the other recipients can bring some small comfort. We think of my donor and her family every day and every time I manage to do something that not very long ago I couldn't do. 

Today is for my donor, she has changed not only my life, but my family's and friends too. She has given me the most precious gift, that of new life and hope and also the gift of knowing how fragile life is and how it should be embraced and enjoyed while you can. 

Time for the May Clinic Visit

There is nothing like a visit to clinic to bring you back to reality. I'd been given a whole eight weeks off, which was fantastic, but it had flown and come round again really quickly. It is a catch twenty two really, it's great to be away from doctors, tests and hospitals and be leading more of a normal life, yet it is a huge relief in some ways to be back at clinic to get checked out and be told by doctors that all is looking fine and going well. 

So I had all the usual tests: bloods, x- ray, ECG and lung function and then saw the transplant nurse, followed by the doctor. Once again, thank goodness all is looking good and I was told that whatever I'm doing to keep it up, as it is working well. After the blip with my lung function recently, it is now higher than it's ever been, so we were all delighted with that. 

They were going to let me go a whole three months until my next clinic, which is pretty good going seeing as I'm only seven months post transplant, but there is still the ongoing issue of the chronic cough I have developed since my operation. They are concerned it may be due to stomach acid - this is a very common problem after a lung transplant and can be very damaging to transplanted lungs-  therefore I've been booked in to have tests on my stomach over a couple days in June. I then need to go back in July for my results. That is still a month though before I'm back at hospital and two months before I'm back at clinic, so that is great.

The only thing that may change this is that I'm still waiting for news about my other surgery from the Lister Hospital and the transplant doctors have advised that if it cannot be done there, then they can arrange for it to be done at Addenbrookes, who work more closely with the Transplant Team. I don't think it will be too long now before I know properly what needs to be done next and where and what I have to deal with. 

I am just pleased that so far everything is still going well and I'm positive that these next two hurdles of more surgery and tests for my stomach, will all just get sorted out and be part of the process of getting me even more better and back to normal. 

We managed to escape clinic fairly early and as it was nearly lunchtime, we went off to a nearby village pub for some lunch. We like to try and turn a hospital day into a more positive day if we can and feeling pleased with the outcome of my visit, we went on to St Ives, which is only a few miles from Papworth, but is a very picturesque, historic town. 

We had a browse around the shops and then had a lovely walk through the meadow by the river, it was a gorgeous sunny day, rounded off with an afternoon tea at a river side cafe.  We have visited St Ives once before my transplant and I couldn't really manage very much or walk very far. 

Life's feeling pretty good now - what with the glorious sunshine, coupled with a good clinic visit and the incredible difference in what I can now physically manage - it doesn't really get much better! 

More about Paris...

We got back home from France safe and sound and for me relieved that everything went well. This was my first trip abroad since being diagnosed with Pulmonary Hypertension four years ago. On diagnosis of having a heart and lung problem, I was told straight away by the cardiologist that I had to cancel a holiday to Spain we had planned and then on formal diagnosis of Pulmonary Hypertension I was told I wasn't fit to fly anymore. Once on the transplant list, there was no chance of travelling out of the country as I needed to be in the UK at all times in case a match came in. I also really didn't feel well enough to be travelling out of the UK while I was  so ill, or that it was a safe or sensible thing to even contemplate given my circumstances.

Rob and I loved travelling and exploring new and interesting places and it was a difficult thing to accept that I may not go abroad ever again, but we decided we would try and make the best of what we could do rather than what we couldn't and we tried to explore and visit new places that were nearer to us. We thoroughly enjoyed doing this - we have always enjoyed holidaying in England too - and we set out to make the most of our circumstances while we waited for my transplant call. Getting out of the house and seeing new places always gave me a lift and helped me to get through that most difficult time of waiting and also gave us some wonderful memories to cherish amongst all the down times we were dealing with. 

I think I'd already really accepted that I'd never go abroad ever again. I think it is a way of coping, you won't be disappointed and let down if you lower your expectations of what the future may hold. Over the last year or two we had been given one blow after another as to where my future was going and it became easier almost not to expect too much, you begin to prepare for the worst, then anything you are told that is better than that is good news. 

 Somewhere deep down though it was a bit of a dream that one day I would be able to travel farther afield once more, although I didn't really ever believe it and we used to talk about visiting places like Hong Kong, New York and South Africa one day. Rob would make lists of where we would go once I got my transplant. He really believed that is what we would do, while I would just humour him really, thinking it would be nice, but I felt the reality of it was slim. 

After having my transplant, one of the first things I learned is that as you recover you have to take small steps one at a time towards the goals you aim to achieve. It is the same with everything you do. I had to learn to eat properly again - from sucking on ice cubes, to eating soft food, to more solid plain food, to normal food; I had to learn to walk again, from learning how to move to the side of my bed, to getting out of a chair, to standing up, to taking a few wobbly steps, to walking down a corridor, then walking down steps, then a few hundred metres, then a kilometre and now miles. There doesn't seem to be an easy way, it is just patience, perserverence and then you get there over time. 

It has been just the same with travelling. We went back to the Lake District seven weeks after my transplant, I was glad to do it, but had to lower my expectations of what I could manage. Luckily we were in our own home and I had to spend time in bed because I was still unwell and I was glad when I got back home to Hertfordshire and was nearer to Papworth, because I had had some serious symptoms to deal with. Nevertheless I was glad I'd tested myself and glad I'd been back to the Lakes, In those early days I was absolutely terrified of something going wrong with my transplant and then I might not ever see the Lakes again, so at least I had done that. 

We didn't try going away again until three months after my transplant, when we stayed in a hotel for the night. We picked one that was only an hour away from home and did room service, as my eating wasn't quite normal and I still had to take nebulisers and heavy medication in the evening, but we had a lovely time and enjoyed the little break from routine. I soon got more confident and medication decreased and I was soon able to manage a couple of nights away and have meals in the dining room and not in the room. Then I got better and better and we visited the Lakes once more, this time I managed to walk a few miles and I could see when I looked back how all those small steps had become a massive leap. 

We ventured into London, this time on the train and I managed everything really well, including lots more walking. As we left King's Cross to go come back home, I glanced over to St Pancreas and said to Rob, 'What is there to stop me hopping on a train to Paris?' It's only a few hours away, not even as far as the Lake District. The idea was now in my head, it was only February. When you have transplanted heart and lungs, you are advised that it will probably be at least a year before you can go abroad. At my next clinic visit I asked the consultant the very same question I'd asked Rob and she surprisingly said that as I have been doing really well and it was a sensible country and I was going to go on the train, it would be fine. 

So the idea began to grow, but even though I'd been given the go ahead I still couldn't quite get my head around it properly. To be able to go abroad again when I thought I never would felt like another huge leap. In the end I waited a bit longer and decided not to rush it and wait until I felt sure. Then came the talk of more surgery I may need and I realised that perhaps I should try and grasp the moment while I could. It had already been confirmed after tests that I will need to have another operation, they are just deciding now whether it's at my local hospital or at a hospital with closer connections to Papworth. Next month I have to have the impudence test to see if I need the stomach fundo operation. So with all this in mind, we decided to book a trip to Paris for a few days, travelling on the Eurostar. 

I deliberately kept the trip quiet, I think I thought if I didn't get excited then I wouldn't tempt fate and end up not being able to go. When the day came, I started having all those last minute anxieties and thinking about all the 'what ifs'. What if I get an infection? What if something goes wrong with my lungs or my heart? I felt determined to go though and although I had got myself anxious, we set off on the train to London. 

There was something special for us about going to Paris. It had been the last place we'd visited only a few weeks before I found out I was ill. In some ways I felt it would be yet another milestone to move forward and away from the trauma of the last few years. To be able to go back abroad again and restart our travels overseas where we left off felt the right thing to do. 

Our journey went smoothly and all to plan. My anxieties melted away once we were there and we had the most fabulous time. We had three nights there and nearly three days. We managed to retrace our steps one day and discover new places too. I realised I was walking for miles without even thinking about it. One of the days I had walked eight miles or so, I couldn't really believe it, I hadn't given it a second thought while I was doing it. It dawned on me then, just how far all those small and neverending little steps lead you. 

I couldn't help but feel emotional at points and thought often of my donor, the wonderful lady who gave me this new chance of life, this new start and this opportunity to do something one more time. I stopped in the flower market and bought a little heart trinket to bring home to remind me of our first trip abroad since my transplant, my donor and what she has done for me. Words will never be enough to say. 

Easter Time

Six months or so after my heart and double lung transplant and we have reached Easter time already. It feels a poignant time yet again, as Easter signals a time of new life and new beginnings in both the religious sense and in nature, where there are signs of new life appearing all around us. Obviously it feels a significant weekend for me having been given my own chance of a new life and a new start. We have spent time in our favourite place this weekend, the Lake District, and enjoyed the spectacular scenery, glorious sunshine and relaxing in the company of family and friends.  

It was a bit stop, start as to whether we actually travelled or not - this time it wasn't the gales or rain, but my lung function. My lung function was significantly down and I had to phone the transplant team for advice. Between us, we decided it is probably due to my reduction in steroids, as it had all started to go haywire since they started to reduce them a week or two ago. All the other things that need to be checked such as temperature and weight were fine. 

As a lung transplant patient I need to check my lung function daily on a spirometry machine and if it declines more than 10% the transplant team need to be informed as it may be a sign of rejection or infection. As I've been lucky enough to escape both rejection and infection up to now, I don't really know what it should feel like, so I'm just keeping a very close eye on things and keeping in touch with the transplant nurse if I feel I need to. Unfortunately rejection and infection are part of transplant life and is always a worry in the back of your mind if you get an ache or a pain or something doesn't feel quite right. You do learn to live alongside this, but it is always there nevertheless. 

Despite the reduction in my lung function, my exercise tolerance has remained the same and I have managed to do some more beautiful walks that have been on my 'tick list' for ages. One of my aims has been to walk up to the Aira Force waterfall, just off the shores of Ullswater. This isn't a very long walk, but it is quite steep at points as you walk up the side of the river valley to the waterfall and therefore a little more challenging for me and definitely something that was out of the question for me before my transplant. I haven't tried this walk for about 6 or 7 years. We spent a lovely day on Ullswater and finished off by a stroll down the edge of Brotherswater, which is at the bottom of the Kirkstone Pass on the way home. All in all I managed to walk about five miles, including the walk up to the waterfall, so I was really chuffed about that. 

I was a little caught out with the weather, it was unexpected wall to wall sunshine and I was very conscious of the sun beating down on my face as we were out and about. This is because I am now more susceptible to skin cancer and it has been instilled in me by the transplant team to wear sunscreen, a hat and keep my skin covered up. Transplant patients are up to 100 fold more prone to skin cancers than other people, because of the immunosuppressant drugs. The risks increase each year post transplant and cardiac transplant patients rank higher risk than some other transplant patients.  Of course I had thoughtlessly come out for the day with no hat, but had luckily got makeup on, which has built in sunscreen. Aware that we were going to be out for a long time in the sun, we found a shop and I bought myself a hat. I decided it's probably always best to leave a spare hat in the car then I don't get caught out again. 

We spent a wonderful day with my mum and sister and her family and had lunch at the pub and then visited Sizergh Castle. We did an Easter egg hunt at home for Ruby, my niece, and then we kept her busy doing an Easter egg trail at Sizergh. It was lovely having her visit and enjoying her delight as she found each Easter egg. I had to laugh, as here I was walking properly again since the last time we visited Sizergh, but my sister and her husband Rob were both struggling. Jayne had sprained her ankle whilst running - she is aiming to do a charity run at some point in aid of PH and organ donation - and Rob had injured his knees in a rugby game. So here I was sprinting around the grounds of Sizergh with my little niece Ruby, while they had to keep resting on benches as we walked about. It seemed a bit bizarre after the last few years, as things were suddenly the opposite way round! 

Easter day was a very quiet and relaxing one, although the weather wasn't as good. Rob cooked a lovely roast dinner and although we had planned a walk down by the river, I decided to give it a miss as I was feeling exhausted. My post transplant cough decided to play up  - it is always there, but sometimes it is much worse than others and it was one of those days. 

I enjoyed a rest, sometimes I forget about the enormity of the operation and the time it will take to recover and I think I can keep up with everything and I also forget that even healthy people get tired and need a rest. I have to tell myself that it is actually ok to have a rest at times and not beat myself up about it! I think I am always trying to prove to myself nowadays that I am much better and back to normal, when really there is probably a way to go yet, I am just impatient to get there! 

We had a visit from friends on Easter Monday and had another lovely day out, lunch at the pub and a visit to the world famous topiary gardens at Levens Hall. I love the gardens here, I like to visit them at all times of year. They look different every time and in each season. There is also an interesting gift shop and a very nice cafe, which sells the most delicious home made cakes! 

All in all I had a wonderful first Easter since my transplant and I was certainly celebrating my own chance of a new and renewed life!