Sunday, 20 April 2014
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!
Wednesday, 16 April 2014
|Celebrations started with Sarah and Oli in the pub at weekend!|
|A gift from my sister - a vintage brooch|
|some silk slippers - a gift my friend brought back from HongKong|
It is proof that transplant can be such an amazing miracle and what a huge difference it can make to someone's life. It is not only life saving, but life changing. Sometimes it is just hard to grasp how much it has done for me and how much it has given me. For now I've got my quality of life back and I cannot thank my donor and their family enough for what they have given me, this wonderful chance to do all the things I never dared hope I'd be able to do again. This chance to enjoy a truly happy and healthy birthday with my family and friends.
|Followed by a cheeky glass of wine later! Cheers everyone! Thanks for a lovely day!|
Sunday, 13 April 2014
Gardening was always one of my biggest passions and to lose the ability to do this had been yet another literally heart breaking thing for me. I used to love getting outside in the fresh air, getting my hands dirty and doing a good days work on the garden. I would garden in all weathers, I've been known to be gardening in the pouring rain and even in the dark at times. It is something that can give you an enormous amount of satisfaction, feeling a healthy tiredness when you've finished and then seeing the rewards as you look out over your garden and seeing your seeds and plants grow. It can be very therapeutic and instantly rewarding.
Throughout my illness, I've tried to be involved in the garden as much as I can, but it was really impossible for me to physically do any work on it as I was unable to do the bending and stretching that is needed and I hadn't got the sustained energy for hoeing, digging or weeding. I used to try really hard to find ways to do things, such as make the pots and baskets up sitting at a table. Even that was a massive struggle though, as it was difficult not to have to keep getting up and down to get compost and all the bits needed and then I'd still need help to move the pots around and Rob would have to do all the lifting and carrying, getting everything ready and organised for me and then tidying everything away afterwards. I really just ended up choosing plants and planning where things would go and then Rob would do all the rest.
During this time though, the garden still gave me lots of pleasure and enjoyment and I loved to sit out in it and enjoy the peace, sunshine, flowers and wildlife. It is always amazing to sit and watch the birds, we often have goldfinches, greenfinches, long tail tits, blue tits, great tits, robins, blackbirds, thrushes, magpies, wood pidgeons and sparrows. From time to time we've had visits from woodpeckers, blackcaps, fieldfares, redwings, gold crests, jays, nuthatches and pied wagtails. They come in from the farm land behind us. We have spotted red kites circling above and occasionally moorhens have visited the pond in winter. We also get herons trying to eat the fish in the pond! Once or twice we have had pheasants wandering through and hedghogs, muntjac deer and foxes like to pass through to wherever they are going. The pond is currently full of frogs getting up to no good and there are pond skaters, dragonflies and newts. We've made a lot of effort to choose colourful plants that will attract bees and butterflies too. It's a hive of activity if you watch carefully! There is nothing like sitting with a book in a quiet space, but keeping a crafty eye out on what's going on out there!
Now I'm back in the garden once more and taking a more active part albeit I have to keep my mouth and nose covered and wear gloves when I'm digging around in soil, because of my shiny new lungs that need protecting from fungi spores and bacteria - these may cause infection. I still can't do chores that are too vigorous like heavy digging and mowing, but I'm able to do lighter things once more like tidying and making up pots and baskets, short bursts of weeding and hoeing, deadheading and tidying. It feels fantastic to be more mobile again once more, being able to bend, stretch and able to crouch down. Simple acts that were once lost, but now I've been given them back. I never really thought I would ever see the day. I am so excited for summer.
Monday, 7 April 2014
After our lovely day out at Titchwell Marsh Bird Reserve in Norfolk, on our way home the next day we went on to a National Trust place called Felbrigg Hall near Cromer. Rob and I have been members of the National Trust since we were in our twenties because we both love a bit of history, old buildings and houses, interesting gardens and nature.
It was a very misty morning as we drove down there and the locals at the pub had told us it was a sea mist that had come in and would take a while to clear. When we arrived the sun was trying to burn through a little and we managed to enjoy lunch sitting outside in the courtyard.
The dove house is spectacular!
There were lots of spring flowers out, everything has started to burst into colour now we have had some warm, sunny weather. The magnolias were out in full.
There is always a good chance to get practising with the camera in these beautiful places, something else we really enjoy.
I loved this chicken house in the orchard garden - very trendy chickens here at Felbrigg!
There were plenty of houses for the bees too!
Very exotic looking plants!
The sun didn't last for very long and we were soon enveloped back in the mist and after such a warm day the day before, it felt bitter cold. We weren't sure anymore whether it was sea mist or the much talked about smog that was on the news that had arrived.
Delicate bluebells in flower.
There were lots of chucks roaming freely - I loved this one!
More exotic plants making a spectacular show in the walled gardens.
We had been lucky to avoid the smog the day before, we hadn't even been aware of it until we saw the news as we had fortunately been in the smallest tip of north Norfolk that had missed it entirely.
The smog that had descended over the UK was a bit of a freak weather condition and was caused by the area of high pressure over the UK mixing with dust and sand blown over from the Sahara with our own pollution and that blown over from Europe.
On the TV the experts we warning that people with heart and lung conditions were at high risk and people were being advised to stay indoors and do minimum excercise. A lot of my friends with PH, heart conditions and transplants were really suffering.
I had a lucky escape on the worst day of it as we just happened to go away from home. Although I have a new heart and lungs that are working well, transplanted lungs are very vulnerable to pollution, which can cause infection as dust and fungi are inhaled. If infection sets in then this can cause the onset of unrepairable damage to my new lungs and the start of chronic rejection.
I must admit I try and guard my new lungs like they are the crown jewels, they are just the most precious things to me, so I was relieved we had been away. As we drove on from Felbrigg Hall towards home, we encountered more lovely sunshine and then as we got further across Norfolk the smog descended and it was really bad. Once home it was a bit better, but still very overcast and evident. I stayed indoors the next day, just to be on the safe side.
It has all gone now thank goodness and I think many of us are 'breathing' a sigh of relief!