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!
