Sunday, 26 July 2015

Not Good News for Organ Donation...

Time is moving on and I'm nearing the 22 months post transplant mark now. It is strange because even after all this time you find yourself doing more firsts or realising that you are doing something with much more ease and confidence than you thought you ever would.

It started at my daughter's wedding and I realised I'd been up from 5.30am and didn't stop properly until past midnight. I realised I'd been on my feet most of the day without even thinking! Just getting up at 5.30am would have finished me off pre transplant! Then I'd looked forward to the evening do - there was a live band and plenty of dancing. Dancing - well that was another huge first - dancing all night and joining in properly with everyone. Most people were a bit tipsy and we were all doing lots of crazy dancing, but I was just drunk on being able to dance again and being able to take part in all the madness and fun!



We spent some time just afterwards in the Lake District. Last year I took my kayak out on the lake for the first time at 9 months post transplant, just for a little go and to see if I could. This year I spent two days just paddling up and down in it. I only do it for pleasure and relaxation - I'm no sporting, racing or long distance kayaker -  just a leisurely one, but it was wonderful to be fit enough again and spend time being able to do without a worry or thought.




Then as a last minute thing we decided to go to Italy and off we went without much thought - obviously just the medication to organise - but other than that, off we just went. I couldn't fly or go abroad pre transplant, so travelling abroad always feels special, a complete privilege. If I even went shopping prior to my transplant it was a major planning expedition - timing around drugs and their restrictions, planning for the wheelchair... all that's changed so much now.




My best moments every day on this holiday were when I was swimming - swimming in a pool once more - another first - how fantastic did that feel? Blooming marvellous is all I can say - floating in the water with the sunshine on my face (and the factor 50) was a pretty wonderful feeling. I didn't think I would ever swim again.



It doesn't ever go away what a miracle that all this has been and what a wonderful gift I've received. While we were away I was contacted by NHSBT and BBC to do some interviews, but I was unable to help because we were abroad. I was a bit disappointed I couldn't help. They wanted to interview me because unfortunately the latest news about organ donation isn't so good. The figures for the amount of transplants taking place are down on last year's and it points to the shortage of donors getting worse.


Numbers are down for the first time in 11 years. Partly because of families refusing to donate - family consent rates remain stubbornly below 60%. Partly because there are fewer people dying in circumstances where it is possible to donate. Obviously with fewer donors, the importance of gaining family consent is such a high priority. It is so important to discuss your wishes on organ donation. 90% of families give consent if they know it's what their loved one wanted. 

There are over 7000 people waiting for transplants - real people - some of them are friends. I've also got dear friends who have lost loved ones because they have had to wait so long and became too ill while they waited. It is absolutely heartbreaking. 




So feeling a bit disappointed this time that I hadn't really been able to help, a friend suddenly tweeted that it was great to see us on the NHSBT Facebook page - we had a look and there we were - a picture of us at Sarah's wedding that I'd tweeted with the caption, 'Thanks to my donor, this weekend I saw my daughter marry.' In the end it got over 15000 likes, lots of lovely and encouraging comments and several people commenting they'd signed up because of it. I was pleased, because in a roundabout way it made me feel I'd done my little bit after all.



Just coming back now to all those 'firsts' and having more confidence and energy to do both old and new things - that's what transplant does for people. It is a miracle. Organ donation is the ultimate gift and leaves a lasting legacy. Please sign up to the organ donor register if you haven't yet and please discuss organ donation with your family. It would be wonderful if all those waiting could be given the new chances I've been lucky enough to have.