I lost my mum 2 months ago to this horrible disease. My mum was amazing and never let it get her down, she was only 61 and such a glamourous woman so the oxygen wasn't the best look for her she always joked about it an tried to make light of the situation. It was just 18 months from diagnosis that my mum passed away, she was admitted to Broadgreen hospital in Liverpool just after Christmas 2012. She had an infection which was to be treated with anti biotics, they didn't seem to be helping her an we just started to see my beautiful mum fade away, she was in the highest amount of oxygen and she was still finding it hard to breath, once again she was trying to keep positive as she was on the active transplant list, well I'll never know how much she was keeping from me...she knew what a worrier I was we all just hoped she would get through this blip and return home. On the 5th January we got the phone call it was devastating to have lost such an amazing woman/ mother/ wife! I know she will always be around and I have had dreams where my mum has come to me and its felt so real! I feel lost as do my dad and brother but knowing my mum is free from any pain and can finally breath again gives me comfort! Though I will miss her for the rest of my life! There needs to be more about this devastating illness! I really feel for anyone who has gone or is going through this! Love you mum, always have and always will xxxxxx