Why it all Began

Why it all Began
As the 4 founders of the group, we, along with many of our friends from our local Cystic Fibrosis (CF) adult unit try to make the best of what we have.
Sharing experiences - good and bad - and spending time together is important. Apart from being fun the support and understanding is a necessary part of our survival and keeps us sane.
The Limited success of Campaigns All too often we have experienced the devastating losses of dear friends to whom transplants came too late. Please see ‘In Memory’ of page. Approximately 50% of patients die awaiting this life-saving operation. Several of our group have used the media to raise awareness of their plight. However campaigns are often short-lived and after the person concerned gets a transplant, or in the worse case dies, the issue of the shortage of organs is forgotten again.
Better to Laugh than Cry Being able to laugh at the way in which CF can control your life is a great way of coping, and has brought our group closer together. Nights out, trips to the cinema, barbecues, dinners and parties are always marked on the calendar and looked forward to. However, most important is our support network. There's always someone on the end of a phone when you want to chat or ready for a coffee or even the pub - when you need an especially big chat. Our network is particularly exemplified in the many e-mails and texts that fly between us. N.B. Changes now in place at many CF centres means this kind of interaction is not advised between patients. The reason for this is the risk of cross infection between patients and concerns about creating an antibiotic resistant stain of pseudomonas. If a patient is in contact with another patient that does not carry the same bugs as them, the worry is that they may then pass those bugs on, eventually creating a resistant strain of pseudomonas which can’t be treated with the antibiotics around today. However, although these changes are acknowledged in hospital, many patients still choose to socialise with other CF patients outside of these parameters.
Reality We all know the realities of CF and that each of us are genetically programmed to decline - CF is a degenerative disease. But this is heartbreaking when you have to sit back and watch your friends deteriorate and die in front of your eyes, especially when this could be avoided. Please in the ‘In memory of’ page.
Taking Action Friends for Life has been formed to continually remind people of the ONGOING need for transplants. Many of us are desperate right now and time is running out.
For the rest of us who are hanging in there at the moment, this campaign is an investment for our future. CF is a gamble. We are all at different stages of the disease, but for all of us a transplant will be the only thing in the end to save us.
Help us to Keep the Numbers up at our Parties and nights out! Back to top