Eleven Months Post Transplant

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. 

Elterwater

River Brathay

Holehird Gardens

Ullswater

Early evening on Ullswater

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!