Tuesday, 21 April 2015


We arrived in Madrid at long long last. It had been a long journey to get there - not a straightforward journey - most people hop on a plane and it takes around an hour and three quarters if you fly from a London airport. For us it's not been quite so simple. Let's just say we started off planning this journey over five years ago and somehow life took us on a long detour and to a few places we had never dreamed off - places we wouldn't have wanted to dream of, but we went there all the same - we had no choice...

Five years ago Rob was regularly travelling to Madrid on business, he kept on saying, 'You would like Madrid, you must come with me sometimes.' It was hard to find a weekend to spare as I worked full time as a teacher and weekends during term time were more often than not taken up with planning and preparation for lessons and other paperwork. I was getting myself increasingly more and more tired and reluctantly decided to cut down my work hours to get a more managable work life balance. With a brand new start and now more time we were all set and ready for our dream of Madrid and travelling to many other places too...

I had some health 'niggles' though and decided to pop to the GP, who thought all was ok, but just to be cautious referred me to a cardiologist. When I saw him, he thought there was nothing too serious either, but just to be cautious... decided to undertake a few tests. The rest most people now know: my tiredness turned out to be severe heart failure caused by Idiopathic Pulmonary Arterial Hypertension and we most certainly got a new life, just not the one we plannned. 

That new life took us to new places, gave us new experiences, but you hold on to hope and your dreams too and never ever let them go. Sometimes you're forced to adjust your expectations and dreams as you go along, but you still have them, however small they are and you just hope against all hope that you can make some of them come true. 

As soon as we reached the hotel, our trip was made even more special. We were asked if we'd stayed there before - Rob said he'd visited around ten times on business - the receptionist then decided to upgrade our room for free to one of their best suites. We didn't tell her how long it'd taken us to get here or why. It made our stay even more special - as though someone knew how long it'd taken us to get there and how hard the journey had been. 

It was forecast plenty of rain during our stay and the rain made a weary effort on our first afternoon. The next few days followed with bright sunshine, blue skies and no rain clouds in sight. It's like the heavens were shining down on us; like we were always meant to get there somehow.

We had a wonderful time exploring the city, I managed to walk for miles through the old winding streets, bustling markets, busy shops, and lively parks and plazas. We visited museums and palaces and took an open top bus ride to see more of the city we hadn't managed to explore on foot.  It still always shocks me how I can walk again - how much energy my new heart and lungs give me. It is that that shocks me most I think, not where I am, but being abroad is icing on the cake. 

It always feels much more poignant when we're doing something we could only dream of not long ago - something that not long ago was just a pipe dream really and had gone out of my grasp. I didn't stop having hope though and my dreams - well I just readjusted them - we still all need to have them, whatever our circumstances. 

Then a special person enabled me to change my dreams yet again and gave me a second chance to live the dreams I once had, so I could live them to the full and enjoy every minute. There are timely reminders placed around the city - there are blood donation buses scattered here and there - reminders of how far I've managed to come and why. I don't really need reminding though, my donor is with me all the time, every day and every night helping me to live and breath. 

When you have a transplanted heart you can often hear its loud beat: I'm used to the sound of it now, it feels comforting everywhere I go. 

I stopped at a souvenir shop and bought a little fridge magnet - it says Madrid and is a red heart shape. To others it just means 'I love Madrid'; to me it symbolises much more. It is hearts that have brought me to Madrid and fulfilled a dream - my new heart and the kind hearts of strangers. 

Always have hope, always have your dreams. 

Monday, 13 April 2015

Easter Time 2015

Easter time has been warm and sunny and we spent the Easter weekend in Norfolk. We were staying  in the middle of the beautiful countryside in a small cottage, where you could just step out from your front door in your wellies and walk for miles. It is the sort of holiday Rob and I love and we had an enjoyable time just wandering around the local farmland, footpaths and country lanes, enjoying the spring sunshine and buzzing wildlife. 

We watched redwings, fieldfares and many other birds just from the front window, which overlooked a paddock of horses and out in the countryside there were deer and geese. We spotted quite a few hares hopping around too, they were camuflauged well and I haven't ever seen as many before. 

Sarah and Oli joined us for Easter Saturday and Sunday and brought Alfie their cocker spaniel puppy. We drove up to the coast a few times and Alfie had a whale of a time in the sea and enjoyed all the walking too, wherever we were! Of course there are a lot of good pubs and eateries in the area, so there were plenty of refreshments wherever we went, even a pub just a few metres from the cottage! 

On Easter Sunday I was saddened to hear of the loss of another one of my PH friends. We had been diagnosed at the same time more or less and had come across each other on the PH forum. Although we never met, we had spoken a lot to each other on the phone in those first few months and would message one another from time to time. We had been friends for nearly five years. 

My friend gave me lots of support during my transplant and we chatted quite a lot over the last week or two while she was in intensive care. It was devastating news and the PH community was shocked once again. It is a very cruel, spontaneous and agressive disease. I will miss my friend, as will many others and I'm grateful for the friendship we had. One of the best things that has come from having had this awful disease is the friendship of others and the lovely people I've met. One of the hardest is when we lose someone, which we so often sadly do. 

I'm acutely aware already how precious every day is, but once again it is a very stark reminder that life must be lived to the full and in the moment, as no one knows what the future is. I'm already aware how lucky I've been to have a new chance in life and know it cannot ever be taken for granted. It makes every moment and those we share with family and friends feel all the more precious. 

On our way back from Norfolk, we visited Ely in Cambridgeshire, again it was a glorious warm day and we enjoyed a walk by the river, through the cathedral grounds and around the town. I still stop and pinch myself that I can walk around so much now compared to when I had to use the wheel chair. It will always feel like a special gift after struggling to walk. Also, knowing that you live with delicate transplanted heart and lungs makes you appreciate all the things that you can do more than ever: you try and enjoy every moment your new lungs breathe and your new heart beats for you. 

We are coming back to Ely again in May, as we have been invited by NHSBT Eastern Region to a special remembrance and thanksgiving service at the cathedral to give thanks to those who have generously donated their organs to help people like me. I am really looking forward to that and know I wouldn't be doing all the wonderful things I'm lucky enough to do now if it wasn't for my donor.