Nicola Langlands passed away on the 02/12/13.
She left behind a huge legacy with Look Beyond the Heart. We are pleased to
announce that we will be continuing the charity in her name. We are currently in
the process of registering the charity which is one of Nicola's massive
We have lots of new events happening this
year so please keep checking our events page to stay up to date. (Events Page)
We would like to invite people to contact
us if they would like to get involved or if they have someone they would like
to refer to us for help and support.
Look beyond the heart is a group that I set up many years ago, and it has taken me a while to get where am today. There has been lots of crying and lots of laughter while I have been working on this support group. However, I would of not of had it any other way and I knew very soon after my transplant I so needed support as I was finding many issues hard to deal with. Sadly not enough people were willing to listen or help, so I thought if you want something done then you have to do it yourself, so that's what I’ve done. Without the support from my family and friends I would not have come this far, and I would like to THANK all those who have helped me and really believe in me .
Deep down I know that the aftercare was as important as the transplant itself, as it affected not only the person who has the transplant but their family too. It is not easy and the journey can take its toll on everyone. Sadly some people don’t like to talk about it and I particularly find transplant patients don’t like to talk about it, as they feel they have failed or may be looked upon as be ungrateful. It not that at all, as they just need a bit of support and help when it is needed.
It's ok to say please HELP me or please Talk to me I don’t understand why I feel like this, because at the end of the day all transplant recipients have been through such a traumatic experience that not only do they not fully understand all the possible outcomes of their transplant, but their bodies also have suffered a trauma, and if they don't get the right help to help them deal with these issues it may cause more issues later on.
I’ve had to deal with my Heart and Lung transplant for 24 years, and it has been a hard but challenging physically ,mentally and spiritual journey. I was the 12th child ever in the Uk to have a transplant, and it was all very new to the NHS doctors. The medication was more toxic then it is now, there was a lot less you could do then tacking infection and rejection , and I was just sent home and told to live life normally, as the as the transplant was not a quick fix, because it may only give me an extra five years. That was in 1989, and I’m still here after 24 years on.
I do think the doctors have learnt so much more now and science has moved on so much, the medication is lot different, the side effects are not so debilitating and transplants are performed in such a different way, enabling patients to get home quicker. Infections are a lot less, but I’m not saying there are still no problems because there are.
Each transplant journey is different, but many have the same problems, so that is why we need to support and talk.
Transplant aftercare is not really supported by the hospitals all over the world, as I feel it is not really understood or has not been really well researched, which is a shame. If it could only just be rearched more, I believe patients and there families could cope, and maybe have some idea of what is to come.
So what I would now like to do myself is put an aftercare plan into place after a transplant, thereby offering physiotherapy, hydrotherapy counselling and supporting a healthy diet. But most of all I would like to build a link group, where people can talk make friends and support each other in a time in their life when it is so needed.
It ok to say please HELP me or please Talk to me I don’t understand why I feel like this .
I’ve had with dealing with my Heart and Lung transplant 23 year ago and it been a hard but challenging physically ,mentally and spiritual and as I was the 12th child ever in the UK to have a transplant it was all very new such as the medication was more toxic.