Life on the List - Save5

The Day I Was Told

2012-12-19T10:01:09+00:00

There are just some days in the year that stand out from all the rest.

23rd August 1986 - the day I met Roy.

30th May 1992 - the day I married Roy.

18th November 1986 - the day my most wonderful mum died.

18th March 2010 - the day I started Save5.

17th December 2012 - the day I got the call from Papworth telling me I was now on the Organ Transplant Waiting List.

From that day forth - the 17th December - my life - our life - was never going to be the same again. In truth since the day I was diagnosed I always knew that a transplant was my only hope but to actually be on the List is a very different feeling from the theory.

The call came. It was very matter of fact and lasted only a couple of minutes. I put the receiver down. I felt mixed emotions. On one hand I was so relieved that I had been given 'one chance' but on the other hand I realised that this was it. This was my 'final and only chance'.

Suddenly tears came from nowhere. I think 3 years of emotions surfaced and tears flowed. Roy and I hugged each other. We looked into each other's eyes. We've been together for 26 years. We never in a million years thought when we first met that this is how it would be. But I guess no one ever does. I mean what is meant to happen is that you both have careers - retire - then do all the things that you said you'd do together and then live to a ripe old age continuing to be blissfully happy. But life for us wasn't panning out how it was meant to be.

Once the tears had subsided - we talked. My only fear in all of this is that I die whilst being operated on. This has to be a very normal feeling. But even though I thought this - I had to find the positive. And I did.

I told Roy that if I did die then at least I would be in the right place with the Transplant Team just by my side so that my other 5 organs could be used along with my tissue and corneas. I really could make a difference for so many people who are in the very same situation as me just as some very kind hearted person had tried to save my life. That is the very reason why I started Save5. To make a difference for the better. To do something worthwhile with my life.

And once I had said it - I felt a calm peace. Tissues were put away. Practicality now stepped in.

We've put phones in several rooms. My bag is packed. Phone numbers have been given to Papworth. We are going to still live our lives and have as much fun as we possibly can.

Life is going to continue and if and when we get the call - then we shall deal with it together just as we have faced everything - together.

So What Is Next?

2014-06-29T10:11:00+00:00

On December 4th 2013 we achieved the goal that I set out to achieve. To get an extra 10,000 people registered as organ donors. Since then many people have asked me "so what is next?".

Here is the BBC interview I did with the multi award winning Jonathan Vernon-Smith which answers that question.

The film I keep referring to in the above interview is this one - T. - Life In A Day

1st False Alarm

2014-06-23T08:27:23+00:00

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Just want to tell you what happened to Roy and I on Wednesday 18th June 2014. The phone rang at 3pm and it was Papworth. The Specialist Nurse said they may have a suitable lung. We were to wait an hour and he would call us back.

He did call back and said yes it looked a good lung so to make our way up to Papworth. I won't try to describe the emotions that Roy and I went through. I just couldn't stop thinking about kind hearted donor and the family who had agreed to try and save someone's life if they could. Please spare a prayer for them. They need it right now.

Roy helped me get dressed and we made our way to Papworth. We got there about 5 o'clock. From that time onwards various doctors and nurses came in and the indications were looking very good. They thought it would go ahead at about 1030 - 11 o'clock.

I was fully prepped and ready to go to theatre. By that I mean I had the hospital gown on. I had a body wash as I wasn't strong enough to shower. I had my arms shaved and part of my groin area too. Loads of blood was taken and I had to do a urine sample. All the time the nerves were kicking in and I felt nervous. I kept on wanting/needing to go the loo but I had to use the camode as it was easier for me. In the end we decided to keep the camode in the room because I was going so often. The anesthetist came in to ask me questions and to sign some forms and to explain what would happen if it went ahead. He said I'd be taken to the theatre area and two cannualas would be put into my hand area. One of the surgeons came to see me too. Everyone is very calm and has time for you. I asked the nurse when the catheter would be inserted and was told not until I was asleep. It is strange but that always worried me. I felt so tired and so nervous. Thank goodness I had Roy right by my síde. It was so hard for him too. Equally as hard.

Then the Specialist Nurse came in who had been with us since calling Roy and said they were doing their final checks. He eventually came back at 12:30 and said the lung was not suitable. We then both went through more mixed emotions. We left at 1am and got back here at 2am. It was a very long 11 hours. We were both really shattered.

Finally please don't forget that prayer for the donor and their lovely family. They need it right now.

Look after yourselves.
T. and Roy xxx

2nd False Alarm

2014-06-23T08:37:47+00:00

Just to let you know we had another false alarm on Saturday 21st June in the morning. The phone rang at 7:15 and it was the Specialist Nurse saying that we should go to Papworth.

We arrived and were met by the Specialist Nurse who said that there was a slim chance that I would get a lung as currently it was looking like somebody was going to have a bilateral if both lungs were in good condition. The first indications showed that the lungs were in very good condition - both of them. I can only have a single lung transplant.

The transplant team did their tests and the lungs were in very good condition and so somebody else had a bilateral transplant. We knew this at about 1230.

Once again please say a prayer for the generous, kind hearted donor and the family who has gone on to save at least one life somewhere. And please say a prayer for the recipient and their family as I can imagine how hard it has been for them as well.

Roy and I came home. Both shattered beyond belief. We will get our strength back and we just want to say thank you so very much for all the love and support that has been given to both of us. There is no way we could get through this without it. Thank you.

Take great care.

T. and Roy xxx