In Honour of our Donors

We received an invitation in the post a few weeks ago. It wasn't the sort of invitation that most people will ever get: not an invite to a wedding or a birthday party or some other usual type of celebration. It was one of those invitations that you feel both priviledged and humbled to receive, because you know that you and your family have been so fortunate and blessed where others and their families haven't.

Our invite was to a service of remembrance and thanksgiving at Ely Cathedral so we could give thanks to and remember those who had saved lives through donating their organs. It had been organised by NHSBT Eastern Region for families whose loved one's had donated organs and recipients and their families. Not many families are touched by these unique situations and it was going to be a very humbling celebration for us recipients to come together with those who have lost their loved ones and generously said 'yes' at a most harrowing time in their lives to enable others like me to have the gift of life. 

As a recipient of a new heart and pair of lungs - not just one organ, but three - I know I have been more than lucky to be offered a new chance of life and blessed that I've been able to recover and survive from a terminal and incurable illness. Receiving my new heart and lungs changed my life and my family's and also affected many friends and aquaintances - my donor's generosity and that of their family's rippled out far and wide and has left an everlasting legacy. 

On Sunday we were pleased to attend this wonderful and very moving celebration. I'd been worried I would become upset and it might feel too emotionally overwhelming. When you've had a life saving transplant, there is never a day goes by where you don't think of your donor and what has been done for you, you are always grateful. It is like no other operation - your emotions are consistently heightened and intertwined with your physical well being, because of the precious gift you have received. 

I literally stuffed my handbag with tissues and hoped for the best it wouldn't feel too much. When it actually came to it, the service was very moving, emotional too and I did need to fight a tear now and again, but above all -  for me - it was uplifting and it felt an honour to be there amongst so many who had given and lost so much. 

After the service we got chance to have tea and biscuits in the side chapel and it was great to meet up with so many of my other friends who had had transplants too. It was lovely to chat with some of our transplant nurses and doctors and meet new people as well - a real opportunity for our community to be together. 

Afterwards I lit candles: of course one for my own donor who has given me so much; a couple for other friends who couldn't get to the service, but so much wanted to be part of it and thank their donors too; one for friends we've sadly lost along the way; one for those friends who are struggling hard against illness and one for those friends who are still waiting and hoping for a new chance of life. 

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.