January

January and arriving with it another brand new year and leaving a previous one behind. January 2017 rings familar with January 2016 for me. I started 2016 waking up and in my own bed and feeling much better after arriving home late on New Year's Eve following nearly a month in hospital and a few months of being unwell. Bring on January 2017 and although I'd not physically been in hospital for a month, I'd been in and out of hospital and made many trips there due to being seriously unwell yet again for those months ending the year. So both times starting a brand new year with fresh new hope and resolve to recover and regain my health once again. And starting the year with an even bigger appreciation and anticipation for life and what this new year may hold.

I'd begun to feel a lot better and brighter during those immediate few days before Christmas. I didn't dare to hope that it might last and I might feel well again. But it did and I'm much better now following those two awful bouts of acute rejection and all that comes with it. The heavy treatment, the harsh side effects and the mental and emotional anguish that comes with knowing that my body doesn't want accept my new lungs. The not knowing which way things may go. Will the treatment work? Will things deteriorate even more? In this world of transplant things can spiral out of control so quickly. It's not an exaggeration - it's happened to friends - we've lost friends unexpectedly and we have friends still, who are battling hard at this moment to overcome the fate that rejection can bring. Organ rejection is challenging in every way and is physically, mentally and emotionally gruelling. 

So January 2017 brought respite and relief for me just in that I knew I'd turned a corner in this battle - that I felt better and stronger was a good sign and this week after a visit to clinic, the signs are still looking positive. The routine tests showed that I'm now stable, that I've overcome this setback for now,  that I've beaten these rejection episodes. I'm still not totally through it. My lung function has declined by 25% now, but there's still a chance and hope it may improve now I'm stronger and able to exercise properly again. My medication has been altered yet again to help matters, increases in some, decreases in others to try and maintain the delicate balances needed to prevent infection and rejection flaring. I've been given a steroid inhaler too, to continue treating and preventing the airway rejection. There's still more clinics in the next weeks and months to check progress. I don't mind any of this, as I count myself lucky to have got this far - to have been able to hang on to some reasonable lung function and to feel well again. It's been the best Christmas present and best start to the new year I could have asked for. 

My new year resolutions aren't big ones. Just going through all this has enabled me to re-evaluate things yet again. My priorities are to keep on working hard on my health, recovery and becoming stronger again. If I can keep my health, then I can work on my other resolutions. Rob had just retired when I fell ill, suddenly he became my carer again. Now in a new year we are starting off again with our retirement plans. More time together, more memories to make. We're expecting a new grandchild, so helping Sarah and Oli and spending even more time with family will be a big priority.

Then I hope to continue working with our Transplant Group at the hospital with our support group and the other initiatives we've been involved with. We set up the support group to help patients going through transplant and its ups and downs. It's strange as the tables were turned in those few months before Christmas and members of the support group gave me so much support, which helped me through the difficult parts. It was much appreciated and made me realise even more how vital it is to have a support network of people who understand properly and can share their own experiences to help each other. 

I've also recently become an ambassador for Papworth Hospital Charity and plan to continue to promote my book 'Life is for the Living' to help raise awareness of PH and transplant and funds to help and support these causes. My last big priority and challenge for this year, is to complete my next book. I've been working on it for a while, but have been stopped in my tracks over the last few months. So I've restarted the work on it now, purposefully aiming to complete my first draft.

They are all goals that are closely related to my priorities, things that have been ongoing already, but with being poorly again made me realise they are things that will always be close to my heart. The things I find important that give me a good balance in life. Time for family and friends. Time for important causes that have affected my life and time for myself through my writing. 

Wishing everyone a very happy and healthy New Year. I hope you have lots to look forward to, new plans and memories to make and that you're still sticking to those New Year resolutions whatever they are. For those struggling with their health, I hope the new year brings hope, strength and the opportunity to feel better. 

New Year, New Resolve, New Life, New me

Ely Cathedral

It is a New Year and a whole new world is ahead following a very special 2013, which was life changing for me. September 2013 will forever be marked on my mind and now it is three months and a little more since my transplant, which sometimes feels such a long time ago, but at the same time still feels so brand new.

Last year I remember starting the year off very reluctantly, worrying what was going to happen or whether I would ever get my transplant. The start to this year is a very different one, as three months post transplant I begin to find both the 'old' me and a 'brand new' me. 

After all the upheaval of the last few months and then Christmas it feels like it should be time for things to settle down. It still feels like it is a bit of a transitional time for our family though after stumbling our way through to Christmas since having the operation. I think I gave myself the 'goal post' of Christmas to just get myself back on my feet again and get through all those initial traumas that need to be endured in the early post transplant days. 

As a family we managed through those extremely difficult early days, then days turned to weeks as I grappled with all the medication and their side effects and some of the after effects of the operation both physical and emotional. Now weeks are turning to months. Transplant is a huge leap of faith into the unknown and I'm still finding my way through as yet and feel as though I haven't quite landed yet since I took that leap.

I recognise these feelings are normal though and have to accept it, as transplant isn't any ordinary operation like many operations. For many operations you just hope to be fixed, then recover, then get on with your life again. Transplant is a very different process from this, especially major transplant surgery involving hearts and very delicate organs such as lungs and the many risks that come with both the surgery and the continuing fight against both infection and rejection.

On top of all that there are many emotional issues to cope with, the trauma of an emergency operation, although expected it isn't planned like other operations are and it all happens 'out of the blue'. For me, those first few weeks in intensive care were extremely traumatic and is still hard to deal with all that happened. On top of all that there are ongoing issues from the operation and constant testing and monitoring that have to be coped with mentally as well as physically. Then a really dificult aspect to come to terms with, is the fact that someone lost their life before I could be given my new chance and that somewhere a family is grieving deeply for their loved one. The Christmas period of family time really heightened this for me as I know it does for many transplant recipients. 

So I've been lucky up to now, the whole point of my transplant, whilst swapping one set of problems for another, was to have a better quality of life and I have got this now. My body is so much stronger and my exercise tolerance and ability to have a go at things is much improved and improving by the day. 

I can now look back over the last few years and back to that time of diagnosis, something I wasn't able to do before  - it was like I had just walked away from a car crash, I just stood up and walked out of the wreckage and carried on walking and walking forward in the best way I could and knew how, never daring to look back on life and how it was before the crash or how it should be. I was just 'accepting' of what life had thrown at me; there seemed no other option at the time, you just have to get on and make the most of what you have. You see everyone else getting on normally with life and that can be very hard, but you do not have to look very far to see others who are not as lucky as you and then you know you have to make the most of every minute and enjoy something of every day whatever the circumstances. 

Oliver Cromwell's House, Ely

Now I can dare to remember what life was like before all the illness, because now I am daring to hope that I can find some of the old me again. I know I will never be the same, that is impossible after such a traumatic time, difficult journey and complete 'about turn' in my circumstances. I have had more than one brush with death over this last few years and that does change your mindset when you have been so close to the edge of life. It will be good to return to that old me though, who used to be independent, busy all the time and wasn't worn out by doing just basic, simple things; the old me that loved walking and gardening and travelling abroad and exploring new places. It will be fantastic to reach these goals again now and I know I am heading in the right direction. 

I recognise it will take small steps to get there, but small steps make big leaps and at the start of this New Year that is the direction I want to go in. I have improved greatly, just this last weekend we visited Ely in Cambridgeshire - I did not need a wheelchair, I was able to walk for a sustained time with lots more energy- so my first New Year steps will be to carry on working on my exercise capacity and building up my strength and fitness, so I can go for a long walk and I can garden again. As soon as my chest feels better I want to get driving again, so I can really get my independence back. We plan to continue travelling, not abroad yet, as I'm not allowed due to the risk of infections, but we have already planned a few trips to explore some new places. 

I'm hoping on my next visit to hospital some of the ongoing problems I have been having may resolve and then in turn the high doses of medication I have to take may reduce. I think this will have a big impact when it happens and I will really feel that I am moving out of this transitional period of learning to be me again and really start being me again properly. So I have my fingers crossed for that one. 

I want to keep up my photography too and pursue more writing ideas and of course take every opportunity to promote the worthy causes of Pulmonary Hypertension and organ donation. 

A candle, prayer and a thought for my donor

It has been a lottery really, a lottery to be lucky enough to get my special gift and a lottery to stay clear of those dreaded rejection and infection scenarios. You often feel as though you are in the lap of the Gods or the Transplant Team and keep hoping a fair wind will keep on blowing. So far I have managed to weave a little path around one crisis after another and still come up smiling and I know that fair wind has just kept blowing and blowing in my direction and I am lucky to get this far. So there is a lot to be grateful about up to now and a lot to be aiming for and getting on with as this New Year starts out...I know there may be some ups and downs, but I also intend that it will be a good one whatever happens! 

2013 turned out to be good, let's hope for another good one!