“I come from a family of seven. Three of my six siblings also had CF, but have died since. I’ve led a full life, though it’s been punctuated by many of the challenges that come with CF, and I’ve benefitted from excellent specialist clinical care, advances in treatments and clinical knowledge and supportive role models at home.”
While figures can only tell us so much, survival statistics can give people with CF, their friends and families, and even health commissioners, a clearer picture of how to meet the needs of older people with the condition. Earlier this year, Dr Ruth Keogh published research using UK CF Registry data to create updated survival statistics for people already living with CF and babies born with the condition today. Her research shows that like Dom, half of those living with CF today aged 30 and above can expect to live to 50 and beyond.
Support when it matters
“I left teaching to stabilise my health, and joined the Cystic Fibrosis Trust, which redressed my work-life balance, but I’ll remember my forties as a time of increasing treatments, more courses of IVs, the start of nightly PEG feeds, and eventually non-invasive ventilation and oxygen. This all reduced my life nearer to one of ‘existing’ rather than ‘living’. Most frustrating was that with increasing illness came increased levels of bureaucracy when applying for benefits. It was time-consuming and energy depleting at a time when I couldn’t afford to lose energy or morale, though the CF social worker’s support was precious.”
CF social workers help to support people with the condition in times of change, advise them on employment or education, help them to claim the benefits they are entitled to and even assist bereaved families. Hear from Eileen, an adult CF social worker at King's College Hospital, about how she works with people with CF and even our own Welfare and Rights Advisor, Sangeeta Enright, to provide the best support possible.
“In 2014 I underwent a double lung transplant which was very successful and dramatically improved my physical and mental health. Transplant has made life with CF more manageable, but it isn’t a cure, it’s another treatment. I often feel like I’m trying to cram as much as possible into my life to add value to it since my transplant, to make up for time I lost.”
The transplant process can be an intimidating and nerve-wracking time, no matter what stage of the journey you’re at. We’ve created three transplant booklets for people with CF going through transplant and their partners, parents and other family members, so that they can be as informed as possible about the process.
As Dom says, transplant isn’t a cure for cystic fibrosis, and we’re campaigning hard to make new, ground-breaking medicines available to people with CF so that one day transplant won’t have to be the final resort for people with the condition. But while campaigning is a vital element of access to medicines, clinical trials and the people who take part in them are the very reason that these medicines are able to be developed in the first place. Hear from people with CF who have taken part in clinical trials, or see if there are any trials that interest you on our trials tracker!
“Cystic fibrosis is time consuming, mind-boggling and personal finance-sapping, but it’s the price we pay for trying to stay well for as long as possible. I find my mind is almost constantly switched into ‘CF mode’ - what medications will I need for the meal I’m preparing? When will I be back home to take my transplant medication? Will I need to take Creon and insulin with me? Will they have a power socket in my hotel room for plugging my compressor into at night? Have I packed enough medication if my plane is delayed or my late train home is cancelled? Will my meeting clash with a hospital appointment? My mind is often spinning around in thought like a whirling dervish.”
Life after transplant, having CF in the workplace, juggling treatments and socialising. Whatever it is that interests you, we've got loads for you to explore this CF Week! Head to our home page, where you can choose between Michelle, Chloe, Amy and Dom and get their unique perspective on time and CF, and find out what we're doing to give time back.