Introductions

We thought it was about time we introduced ourselves, properly. Rachael 22yrs old (or will be on the 22nd Feb anyway!) from Cheshire and Victoria also 22yrs old from Essex. We both suffer from incurable lung disease, Tor from the genetic disease Cystic Fibrosis (CF) and Rachy from a rare interstitial lung disease (ILD) and we are very honoured to accept our new roles within the charity Live Life Then Give Life as patient ambassadors. Part of our role is to blog about the ups and downs of every day life on the lung transplant list, in the hope that putting faces to stories and statistics will make them more real to the public.

Tor was born with Cystic fibrosis and diagnosed at 2 years old, after a relatively normal childhood with CF during her late teens it progressed to end stage and she has now been waiting for 2yrs 7 months for a double lung transplant. She has had 3 false alarms, a situation where Tor is called to the transplant hospital, prepared for transplant and for various reasons, often the lungs aren’t good enough, are damaged or just aren’t a good match the transplant is cancelled. A heart breaking situation for everyone involved but one that is common on the transplant list. From day to day Tor struggles a great deal with every day tasks; she requires constant oxygen to help her to breathe and is plagued by fatigue and pain.

Rachy went onto the lung transplant list in November 2009 after a long and complex battle with various other health issues. Rachy had a normal and active childhood; her only aliment being mild asthma which never stopped her doing anything she wanted to do. In her early teens she began catching frequent chest infections which led to irreversible lung damage and by the age of 15 she was oxygen dependent. Top doctors from all over the UK struggled for many years to accurately diagnose Rachy’s lung disease and then towards the end of 2008, after many years of being ill with ILD but stable the disease began to progress rapidly and Rachy went into end stage respiratory failure, she was admitted to a hospice where she was expected to die. Transplant had been previously dismissed as an option for Rach because doctors were not able to diagnose her lung disease properly. The fighter that she is she did survive, her doctors decided that they couldn’t officially name the disease which is now thought to be autoimmune (her immune system is attacking her lungs) but that didn’t matter and she was eligible to go onto the lung transplant list.

For both of us now every day life revolves around what seems to be an endless routine of medication and antibiotics, nebulisers, inhalers, oxygen, wheelchairs, chest physiotherapy, for Tor over night calorie rich feeds via a feeding tube to keep her weight up, for Rachy non invasive ventilation 20hrs a day to help her physically inflate her stiff lungs and for both of us painkillers to help keep us comfortable. For us now a lung transplant is our only hope, it is the only way we are going to survive. Part of our acceptance into this role was because statistics say that one of us is going to die waiting. 50% of those currently on lung transplant lists die before organs can be found. We want to change that, by putting faces and stories to those statistics we hope that it will encourage more people to sign up to the organ donor register and this blog is going to be part of that. From now on we’ll post individually about our daily lives on the lung transplant list; we hope to be able to take you through our transplants and on our journeys back to health and life.

Rachy & Tor x