Hide and not seek. This is the latest challenge for people with the life-threatening illness Cystic Fibrosis (CF)*…
Under current medical guidelines CF patients have been advised to no longer spend time with each other. It’s all down to the risk of making each other more ill from cross-infection.
From my experience it’s hard for CF people themselves to come to terms with, especially those like me who have lived for 41 years, who didn’t previously have such restrictions placed on them. Some regularly meet up or live together. It’s certainly not that well known outside of the CF inner circle that sufferers can’t really mix together.
Cross-infection is an issue of considerable concern for the CF community. Those with CF attract different bacteria or ‘bugs’ that grow in their lungs, which may be harmful to others who have CF but who do not have the same ‘bugs’.
Bugs such as B. cepacia complex and Pseudomonas aeruginosa can be transmitted from person to person by close personal contact, such as sharing rooms, sharing medical equipment, sharing cutlery or crockery, and by kissing or coughing.
There is little risk of transmission of ‘bugs’ in an outdoor environment, but travelling with other people with CF in a car or a coach, or meeting them socially would introduce a higher level of risk.
There is a worry that CF patients are more likely to pick up strains of these bugs from each other that are more difficult to treat than strains picked up from the environment. For this reason, CF Centres and Units are now encouraged to offer separated clinics.
This gives the expression ‘dangerous liaison’ a new meaning. But how does this work in practice?
I had a recent outpatient visit to Frimley Park hospital to assess the state of my lungs as part of my IV treatment. Up to a couple of years ago, I would have waited (and waited) in the reception area with other patients and their families until our names were called to go into the doctor’s room. I got to know a few other patients and we would often chat (and cough) and chat. We might even have some of the gourmet tea from the machine.
As my CF Unit has gone with the times and latest trends in CF care, on arrival, I am now ushered straight through to my pre-determined treatment room and the doctor comes directly to me (now there’s power!). The knock-on effect is that I don’t really see the other patients as I previously would have done. This might actually suit those that don’t want to engage with others about their CF.
We can hear the coughing from the separate treatment rooms, usually set off by blowing into the medical equipment, but we are unable to see each other. It’s like listening to the crickets on a warm climate but never actually spotting them. Our solitary confinement makes the clinic feel like we are staying in the Alcatraz ward of the hospital. A case of splendid isolation you might say…
If I do venture out of the room to ask for help and happen to come across someone else with CF during my journey, I’ll always try to acknowledge or speak to them from a distance. I won’t talk into my sleeve, like some FBI agent, I just won’t get too close as we speak. This does feel strange and slightly awkward. Unwittingly, one parent of a CF adult always covers their mouth when they meet me, which makes me feel a bit like a leper.
How does this cross-infection affect activities outside of the CF clinic?
A forthcoming CF fundraising black-tie ball has been organised in Southampton by a CF person I know and I’ve not been invited. I completely understand this is due to the risk of cross-infection so I don’t take it personally. It is a shame though as my mum, elder brother and his wife are all attending and I do look good in black tie!
Also, my mum’s Christmas card CF fundraiser will tend to feature me as the sole CF representative; and for my new gym membership in London, the management are looking to check if they have any other members with CF so that we are not exposed to each other.
From my experience, there’s only so much you can do to be pro-active. In my day-to-day life, I’ve probably been in close proximity with other CFers without knowing it – in offices, the underground, trains, pubs and public buildings like museums and sporting grounds.
In this brave new virtual CF world, it’s a shame that CF folk can’t openly meet up and chew the fat. By not being able to see each other’s body language, we miss out on the most powerful form of communication and engagement.
Our solitary existence has increased the use of other engagement channels like this blog, my forthcoming book, and social media such as Facebook, Twitter and the CF Trust online forum. Perhaps in the future CF will only be discussed in the form of text speak?
I believe that the CF community knows each other pretty well through our battle with this wretched illness. I think I have a quicker connection with a CF person that I meet for the first time than with some non-CF people because we already know each other’s pain and daily life struggle. In some ways, maybe we don’t need that face-to-face time getting to know each other?
I do feel it’s important not to hide your CF away and have at least one person with the illness that you can connect with on the phone or online. I tend to use the elder CF statesmen I know, Sean Bell and Chris Miller, for my sanity checks.
To meet or not to meet? That is the very real dilemma for people with CF. We need to know the risks associated with cross-infection and be as sensible as possible about how it’s policed. It’s yet another cross that we all have to bear.
Want to help CF people get a very important drug (Kalydeco) that’s being held up by cost – click here to sign the e-petition.
View a recent Mail on Sunday article about how a young CF chap has helped his CF by working out in the gym. The article also references me for my ‘flabs’ rather than my abs!
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.
Yours cup half full.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website.