Let Love Live On!

LLTGL have launched their new campaign Let Love Live On to coincide with Valentines day.  You may be aware that ITV have been covering organ donation all week in their From the Heart campaign, which has been excellent awareness and seems to have provoked much discussion about organ donation.

The LLTGL campaign is aiming to create a positive message about organ donation and the fact it is not just the recipient who is affected.  They have created an amazing film advert portraying a young couple in love, with the twist at the end of showing the young man's transplant scar with the slogan 'Let Love Live On'.

I think its a lovely clip with a positive message.  I also have the song Falling In Love Again stuck in my head and keep singing the intro over and over!  Andrew said last night I had "the voice of an angel.....angel of death".   Charming husband I have ;-)

As part of this campaign, some VERY brave couples also posed naked (tastefully!) together, with their transplant scars showing.  I know some of the couples involved and it was a difficult thing for them to do but they knew this would get coverage in the media - showing normal loving couples who are still together through the gift of organ donation.  It was covered in the Daily Mail and I was appalled with some of the comments left by ignorant people online who have completely missed the point of the photo shoot.  Knowing the people involved made me even more enraged but I guess that is to be expected with anything in the media.  It also means the photo shoot has created a stir, has got people talking and in this way has once again got organ donation at the forefront of peoples minds (even if some of those minds are rather tiny ;-))

Article in Daily Mail

You Tube video interviews with couples


And of course, if you haven't already signed up....(and if read my blog and aren't on the register - shame on you!) then sign up via LLTGL website please.     You can also help by sharing the video above on your facebook, with your friends, on your blog.....spread a little love :-)

Talking....what's new for me?!

The body image presentation went really well.   I flew down to Southampton early on Friday morning, so I arrived in time for the meeting starting.  I listened to the morning presentations about liver disease in CF and other complications - it was actually quite interesting and I had to stop myself from asking questions on a few occasions, remembering I was there as a CF patient, not as a respiratory doctor ;-)

My slot was after lunch and I was sharing 1.5hr slot with a CF dietician from Leeds, who has previously spoken on the topic.  We had never met before but had a quick catch up at coffee to decide how to hang the presentations together - talk about last minute haha.  It worked really well as Alison did the introduction and presented studies and evidence base behind body image issues (mostly relating to weight and eating patterns) then I did the middle 40mins talking about the patient perspective, before Alison finished with clinical implications.  I based my slides on the booklet - trying to keep it quite light hearted and chatty but emphasising particular areas.   I did talk about weight and diet, but when we developed the booklet lots of patients brought up issues about posture, enlarged rib cage, looking young etc which were not related to weight.  I was able to speak about this spectrum of issues, which would be relevant to different members of the CF team, and also gave some of my personal experiences to make it even more real.   One of the topics was about CF people have very salty skin and how this can dry like crystals and white marks, which affects body image.  I told them about my friend Victoria, who has a tattoo down her arm saying "salty girls taste better" with a wee salt shaker.  They seemed amused at this, and can at least see that most CF people don't take life too seriously!  I am getting  picture of the tattoo if I ever present this topic again.   I felt overall it went well, and considering I haven't spoken on this subject, I don't think I seemed too nervous.   I got lots of lovely feedback at the coffee break and spoke to a few people, who commented on changes they might make to clinical practice as a results of this.  I felt it had therefore been worthwhile!

For those who didn't ever see the booklet, it is hosted on the CF Trust website (as well as the original relationships booklet) under external publications  HERE

I was pretty shattered yesterday due to the long day, but must admit to a long lazy morning!   We then went to visit Andrews Gran in the nursing home.  She is stable but very frail.  I gave her a manicure and painted her nails in a nice neutral pink - I am not very good at manicures but I think she enjoyed it anyway!  We then went to get Seb from mum and dads - he had been staying there for a couple of days because the dog walker was at a wedding, so he would have been on his own for 2 long days.  We can't have that for little Seb ;-)   He seemed pleased to see me, although its sometimes hard to tell haha!    

Next weekend we are going to visit some friends in Manchester, and on Sunday are catching up with my friend Sinead, who lives just outside Manchester.  She had her lung transplant about 8 years ago so is way ahead of me :-)

I plan to chill out for the rest of today, before it's back to the grind stone tomorrow...