Thursday, 22 May 2014
Now we have reached June. It feels like quite an achievement to have got this far. We have had a bit of mixed weather this last month, but we have had our first bout of hot weather amongst it too.
We enjoyed our first barbeque of the year, just like many other families. It has felt especially good to be back outside and enjoying the garden and the longer days and sunshine once more. To be just sitting out in the garden relaxing and enjoying a barbeque with my family has felt marvellous. Since last October it has always been just one step at a time, no thinking too far ahead, just one step forward and seeing where each step leads. I didn't really dare think ahead to summer and enjoying barbeques back in October, so they feel quite special moments that I'm able to enjoy now. I'm always grateful for each day as it comes.
Better still I am back making myself useful in the garden again. This year I'm making up pots and baskets and doing lightweight jobs. I have to wear gloves and keep my face covered because of the fungal spores in the soil, which can be dangerous for my new lungs. I've also got to wear a sun hat and sun cream as my risk of skin cancer is very high due to the immunosuppressant drugs.
I'm trying hard to follow the advice I've been given, as I want to give myself the best odds in staying well. It is easy to become relaxed about it now I feel so much better and I don't wish to wrap myself in cotton wool, but when I think back to where I have come from, then I know it is better to be cautious. After being given a new chance, my biggest dread is ending up back in the same place again or even worse, so it is the main priority in my life to keep myself as well as possible.
My lung function is good still - well better than ever - and I'm working hard on building up my fitness levels and stamina. My SATs are at 99% - better than Rob's! I try to keep myself as active as possible now and find new ways to keep exercising that I enjoy. At the moment several walks around the garden carrying a half filled watering can is proving a good workout on an evening, as is a bit of gardening - all that bending, stretching and squatting! I still like walking though; I still can't really get over the fact I can go for a walk. Rob is starting to complain that I keep making him do lots of walking and I'm walking faster and faster. I'm still using my exercise bike, doing some basic yoga and step aerobics and I think all of this is really helping my new heart and lungs.
I don't pinch myself every five minutes like I did in those first few months, but I do still pinch myself, maybe every day rather than every minute! I often have moments that feel totally overwhelming, it isn't necessarily when I'm doing something extra special or new; it is more usually when I'm doing something like pushing a shopping trolley around Tescos or stood there wading my way through a big pile of ironing, just something very ordinary or mundane. I think it is because when I was ill, I felt so robbed of being able to do such basic things and had lost so much of my independence. It is just so wonderful to have it back again once more. Being able to go out on my own once more and walk around like a normal person can still feel shocking. It sounds silly to most people I know, because most of us just take being able to walk for granted, I know I used to.
A day still doesn't go by where I don't think about my donor and their family and what they have had to go through. They have given me so much I don't think I will ever really be able to put it into words.
They inspire me on to keep making the most of my new life.
Planting up the summer bedding plants, gloves, scarf, sun hat and all, but hey I'm gardening again!
Friday, 16 May 2014
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!
Monday, 12 May 2014
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.
Sunday, 11 May 2014
It all felt as though it was all just a dream. We were retracing our steps around Paris. We had been four years ago, just two weeks before I was diagnosed with my illness and when I was just about to start a new job and was full of enthusiasm for a new start and new future...
Round the next corner we came upon the magnificent Notre Dame once more. Its gothic glory looming high above the jovial festivities of the annual May 'Fete du Pain'. We carried on, following the path of the Seine to the Ile Saint Louis. I remembered this quiet little corner of Paris well, with its smart, chic shops - shops you want to peer in, but daren't go into. We were suddenly window shopping once more, just like before.
We were walking around the grounds of the Louvre once more, enjoying the busy spectre of the tourists, the haggling and hustling of the street vendors. The bold, glass pyramids loomed above it all against the backdrop of the graceful renaissance palace. We stood in awe, glad to be here enjoying it all yet again.
We drifted on past shops and pavement cafes underneath towering buildings and crossed the Seine to the Isle de la Citie, we passed Sainte Chappelle, with its medieval and gothic traits and found ourselves at the Marche aux Fleurs once more. It had started to rain - what better place to take refuge than under pavillions of perfumed hanging baskets, scented climbing plants and colourful roses in full bloom. There was a spring like atmosphere and wafts of jasmine and gardenia flurried in the air as we browsed each intricate stall of trinkets and flowers. How I had longed to be able to come here once more.
It was still raining so we ventured into a cafe for some lunch to warm us up. I felt as though I had just stepped into the picture on my kitchen wall. A typical French pavement cafe, shades of red and gold looking welcoming and inviting in the damp and wet. Waiters busy in black with their tasks of the day. We sat contented, people watching, watching the world go by, serene in our own little world.
We had had lunch here last time. To our delight, we stumbled upon the same restaurant, it was still there, Sorza on Rue Saint Louis. We couldn't resist the temptation to go back inside, so we boldly went in amongst the diners and asked if we could have a very English afternoon tea! Amused but polite, they were happy to oblige us.
Sitting back in this tiny French restaurant once more, was the moment I knew my dream was complete and wasn't a dream, but reality. Another dream that had come true. Deja vu. My life had come full circle, what goes around comes back around or so they say. I was back, just where I had left off... a lot had happened in between ... but here I was again, just like 'before', but obviously just a little bit 'different'. Once again building a new life, a new future....