RESOURCES
A selection of wonderful resources for patients diagnosed with heart disease, transplant recipients, and support for families and carers.
Finally, there are some incredible charities raising awareness for organ donation, with informative guides for how to become an organ donor and have the heart-to-heart conversation with your loved ones.
Heart Patients
Pumping Marvellous
British Heart Foundation (BHF)
Pumping Marvellous is a brilliant heart failure charity, and they have a fantastic heart failure guide, which explains in very simple terms the different types of heart failure, symptoms of heart failure, and understanding the medications.
Join the community:
British Heart Foundation (BHF) provides information about heart disease for a whole range of age groups, including support for young people undergoing heart surgeries or having implantable devices fitted.
BHF also offers a free Heart Helpline, where you can raise any concerns you have about your heart health (or the heart health or a loved one) and speak in confidentiality to a specialist cardiac nurse. You can call them on 0808 802 1234 (freephone), weekdays 9am – 5pm.
Transplant Patients
Transplant Support Groups
There are a wide range of transplant support groups for those awaiting transplants, and would like to hear about how others have found their experiences with listing, and also life after transplant. I can only speak for Freeman Heart and Lung Transplant Association Group, and Heart Transplant Families UK, which are both incredible for both patients and families.
Join the community:
-
'Heart Transplant Families UK' on Facebook
-
'Freeman Heart and Lung Transplant Association (FHLTA)' on Facebook
-
'Heart and Lung Transplant Patients Birmingham QEH' on Facebook
-
'Royal Papworth Transplant Social and Support Group' on Facebook
-
'Harefield Transplant Club' on Facebook
​
​​
Organ Donation
NHS Organ Donation
Live Life. Give Life.
Share Your Wishes
Donor Family Network
The NHS Organ Donation website has a wonderful guide to organ donation, which simply explains how to become an organ donor, ways to start the conversation with your loved ones, and how your decision will always be respected, whether or not you decide to become an organ donor.
Live Life. Give Life, is a beautiful charity that focuses on raising awareness for organ donation.
​
From breaking myths about organ donation, to answering some of the most frequently asked questions about becoming an organ donor, this UK-based charity is doing some incredible work to encourage everyone of all ages and backgrounds to have the conversation and register their organ donation decisions.
Share Your Wishes gives the chance for transplant recipients and organ donor families to share their experiences with organ donation. The amount of tears I've shed reading some stories just shows how easily you can be touched by someone's selfless decision.
Join the community:
-
'Share Your Wishes' on Facebook
​
​​
The Donor Family Network is a beautiful charity that supports donor families and promotes organ and tissue donation. Each year, at the start of the Transplant Games UK, the Donor Family Flame gifted by this charity is lit at the start of the Games in remembrance of the beautiful donor angels who gave life to up to 9 people.