WARNING!!  This is a very ‘information heavy’ post!  When I began researching cross infection, I really went into depth.  So if it gets a bit much then feel free to check out one of my other posts like ‘Life at Work’ or ‘Surviving School’ And if you do make it to the end, then you deserve a pat on the back and a gold medal!  Also be sure to leave a comment below!

Good luck!

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Cross infection is a significant part to us lot with Cystic Fibrosis. The very simple way of putting it is that if I have a bug that’s living in my lungs, I could give it to another CFer who doesn’t have that bug. And vice versa. Which is why it’s important to keep apart. If you’ve already read The Facts page, you will know that a ‘healthy’ person will not catch the bugs that we carry. It’s okay, you can take the Hazmat suits off now, we aren’t contagious.

Because of the sticky mucus we produce, it seems to be the perfect, homey place for a couple of infections to grow and reek havoc. Little buggers. Physio and exercise will definitely help clear them out, so get your running shoes on!

But back in the olden days, CFers used to share waiting rooms and wards, meet up and spend time with each other, probably have a good old chin wag I expect. Even the kids used to attend holiday camps together.

The first crumb of evidence was recorded in 1979 when an outbreak of Burkholderia Cepacia (which I will now shorten to Burk, because it’s too long to write and I can’t pronounce it) was seen in people with CF in North America. This new pathogen started to emerge more frequently in N.America and it had the potential to spread between CFers and cause serious harm.

In 1990, a paper was published for the first time in the UK after identifying 11 CFers who had contracted Burk, over six years. Three out of the 11, unfortunately passed away, two of which had a rapid deterioration now known as the ‘Cepacia’ syndrome. At the time there was no evidence of cross infection nor the mis-use of antibiotics. But it was suspected that they might have picked it up in a CF holiday camp in N. America a few months before Burk was found in their sputum…and so it begins…

It was not until 1993 when a very clever Professor by the name of ‘Prof. John Govan’ published a paper about Burk transferring to other CFers who didn’t have Burk (non burked?!). In short, there was an analysis of 210 CFers in both the Edinburgh and Manchester CF centres who showed an increase in Burk between the years of 1986 and 1992. This increase emerged after 1989 when an epidemic strain had spread between CFers in both clinics. Evidence suggested that social contact was imperative to the spread of the epidemic strain between and within clinics.

The guidelines which followed, suggested CFers (with Burk) should be separated within the hospital and frequent social or intimate contact was considered a high risk of cross infection.

From then on it became mandatory for all CFers carrying Burk to be separated from those who didn’t. This led to a reduction in the occurrence of new Burk infections and also in the widespread of chronic Burk infections. Well done John! *Applauds*

Now that’s just one of the many infections (say whaat!). The other most commonly found in CFers, is Pseudomonas Aeruginosa (and from now on we will call this one Sue). The first thought that Sue could be integrated with cross infection was in 1982. There was a 12 month study that took samples from CFers to determine if it was happening. One particular strain (theres lots of different strains!) appeared in four unrelated people but as it happens, none of them had been in contact with each other therefore it was concluded that the strain was picked up from the environment…

However, six pairs of CF siblings shared the same strain which indicated that CFers sharing the same household could cause cross infection to happen.  But at the time it was said that Sue was mainly picked up from the Environment.

In 1983 there was an epidemic strain of Sue which became resistant to many drugs. This had occurred in the CF Danish centre where in 1973 there was a less frequent strain but had grown resistant over the years by the repeated use of chemotherapy. This epidemic had only stopped when people carrying those resistant strains were isolated.

Moving onto a study in 1990, in which 22 CFers from the Danish centre went to a winter camp for a week. Before going to the camp, 17 of them had Sue in their lungs and 5 did not. However after returning from camp, all 22 CFers had acquired it. The 5 people who had developed Sue, had grown identical strains from the other 17. From then, they concluded that CFers harbouring Sue should be segregated from those who did not have it.

Then in 1996 a report showed a high percentage of children in the CF Liverpool centre who had developed a strain of Sue which was resistant to medication. It showed that this new resistant strain had arisen from an epidemic. 65 out of 92 people had developed it which highlighted the risk of cross infection with Sue in clinics. Over time, other CF clinics in the UK had developed the “Liverpool Epidemic Strain”.

In 2001, a new multi resistant strain of Sue had emerged in 22 patients in the Adult clinic of Manchester. Therefore Cross infection had occurred.

Following on from this, the CF trust published a report in May 2001 named, “Pseudomonas aeruginosa infection in people with Cystic Fibrosis. Suggestions for prevention and infection control”. However there was some reluctancy between clinicians, one senior physician said,

“There is a risk of stigmatisation by sputum bacteriology, enhanced anxiety about what maybe a relatively benign organism (many adults with CF remain well despite positive cultures of pseudomonas aeruginosa for decades) and fear of attending a CF centre or school or social event where another person with CF may be met. There are risks of doing too little but it may be worse to do too much”

Which basically means, that he didn’t think it was worth the risk of separating CFers when some infections might not be harmful and it would mess with the mental health of CFers. Fair point, but still a plonker.

Another described the CF trust as “an unruly bunch of zealots” ! I must admit, I did chuckle at that one!

A study in 2002 found that highly transmissible strains of Sue, as opposed to unique strains, required more care and more IV antibiotics to treat it. It caused more problems but over an 8 year study there was no indication of an increased mortality. Woohoo!

In 2003, a 14 year old boy, who did not have CF, but bronchiectasis, developed a multi-resistant strain of Sue after staying in hospital and sharing accommodation and physiotherapy with CFers who had the genetically identical strain of Sue. This spread indicated that those who are immunocompromised were at a higher risk of cross infection when mixing with CFers.

Pseudomonas is generally considered as an opportunistic infection. They will only infect and cause problems with someone who already has a lower immune system.

Sue is the most frequent cause for infection in CFers. There are two types of ways you can catch it. The first is directly from another CFer, and the second is indirectly from the environment.

The environment includes things such as, plants, soils and surface waters. Hydrotherapy pools and Jacuzzis are a risk to CFers as the combination of water, warmth and aeration are an ideal home for Sue to live in. As long as Swimming pools maintain the right amount of chlorine, they are deemed safe! So get your goggles out and go for a swim, its great physio!

Hospitals have been found to spawn Sue particularly in ICU but also within washbasins, sinks, and the hands of staff. This is why Doctors, nurses etc. all wash their hands thoroughly, use alcohol rub, or disposable gloves before seeing anyone.

It is now mandatory that a CF clinic is spilt into microbiological status depending on what bugs you have. For instance, my hospital appointment is always on a Wednesday. I have Sue and Staph (Staphylococcus Aureus, for anyone interested!) When I go to the hospital now, for either a clinic appointment, annual review or as an inpatient, I have my own room, like the other CFers.

There are loads of recommendations on how to reduce the risk of Cross infection. These apply to not only Burk and Sue, but also MRSA (methicillin-resistant Staphylococcus auereus, different to the Staph I have) and NTM (non-tuberculosis Mycobacteria) Obvious things like covering your mouth and nose when sneezing or coughing, and washing hands. But other suggestions include, but not limited to, sputum should not be spat down toilets, sinks, washbasins or showers but into a sputum pot that must be covered with the lid or into a tissue that should be disposed of immediately into a clinical waste bin.

Physios should take appropriate hygienic measures such as the use of a disposable apron. Surfaces and apparatus should be cleaned and dried after each use, for example stethoscopes. Rooms are cleaned thoroughly between patients.  And things like toys, pens, computers and board games should not be shared. Even food should be taken into an inpatients room instead of sitting around a table. It is ideal to have individual bathrooms, toilets, and well-ventilated rooms.

Things like the lung function test, exercise tests, nebulisation and airway clearance treatment should be done in a room with the door shut.

Even casual meetings indoors or outdoors can be a risk of infection which is increased the longer and closer the contact. For example, schools. It is preferable that two people with CF are in separate classes to each other which is something I never thought about when I was at school. This applies to higher education and also in the workplace… an excellent reason why it’s so important to be open about CF in an interview.

Siblings with CF should have separate bedrooms and do their physio and treatments in separate rooms and of course not share toys or cutlery etc.

For Burk, it’s a bit more serious. Saying this, the risk of accumulating Burk from the environment is pretty low. However there was a case of 3 out of 35 incidents where Burk was isolated from home nebulisers. People who were careful with cleaning and drying their nebs and followed a good hygienic structure, had a minimum or no contamination of Burk. This is your reminder to properly clean your Nebs! Go boil the water and grab that fairy liquid!

Did you know that Burk can survive on the skin for up to 30 minutes? But also on sputum or contaminated surfaces for weeks and in distilled water for years (say what!!) There was a study of an air sampling that showed the presence of Burk in room air of 5 out of 6 Burk positive CFers. After 4 of them left the room it was still present there, one occasion lingering for 45 minutes. Another study showed that it was more likely to be in the air after airway clearance.

As well as Burk Cepacia there’s also a relation to Burk Pseudomallei which is a pretty lethal infection to humans and can actually be found during the rainy seasons in subtropical regions of Southeast Asia and Australia… Travelling to these places during the rainy season when it can be present in soil in high numbers is not advised for people with CF.

There was a case of a 25 year old lady who visited Thailand for three weeks in September in 1997 and contracted Burk Pseu. Her lung function rapidly declined with a productive cough and an intermittent fever. Fortunately, it was eradicated by the use of lots of drugs I can’t pronounce let alone spell! But seriously, if you’re thinking of travelling over to that area, let your Doc know!

Another thing to mention about Burk C. is that in some cases, the consumption of raw unpasteurized milk can contain harmful bacteria, including Burk. Which causes concern for CFers where colonisation and infection with Burk could lead to a fatal narcotising pneumonia and premature death😳 … jus’ sayin… stick to shop bought stuff just in case!

For infections such as NonTuberculosis Mycobacteria abscessus (NTM) it can cause accelerated lung damage and pneumonia, which obviously ain’t great. It may also prevent someone from having a safe lung transplant.

It was first thought that NTM could be picked up from the environment and not through cross infection but further studies suggest that it’s transmissible potentially within hospitals via contaminated surfaces or through the air.  The new Papworth Hospital (which opens in 2018!) has designed a new air-handling system for the CF unit to help tackle the NTM problem.

At the moment, CFers with NTM must be segregated from others, and be seen in well-ventilated rooms with the door shut. There should be an hour between each patient to allow for dispersion of possible airbourne contamination and for it to be cleaned thoroughly. Also inpatients should have their own room, ideally with negative pressure, which allows air to enter a room but not escape it. Not entirely sure how it works but it sounds quite clever!

Lung transplant recipients need to take powerful meds to dampen their immune system and to protect the new lungs from rejection. This means it increases the chance of infection which is why it is so important for recipients to avoid anyone who has an active infection whether that be a cold or the flu! Stay away from them! Get the Hazmat suits out! RUN!

But in short, CFers should theoretically not spend, if possible, anytime with one another, whether that’s talking face to face, kissing, coughing, sharing rooms, medical equipment, cutlery/crockery etc. Because it will undoubtedly be a high risk of cross infection. A low risk might be to meet outdoors for a short period of time. A guideline suggests to stay at least six feet away from one another, so if you see another CFer, maybe use a megaphone! Of course this is a little different with siblings.

If, like me, you were wondering how bugs transmitted from say, cutlery, into the lungs then I have just the answer! (thanks to the CF Trust for contacting the Clinical Advisory Group) The bugs that infect the lower airways (the lungs) can often be isolated from the upper airways, such as the nose and throat. Whilst it is possible that, in some cases, infections can be accumulated by breathing in a bug, it is also possible that spread could occur by the bug entering the mouth, like when equipment such as cutlery or even hands become contaminated then put into the mouth. So there you go, now you know!

But how come us CFers can’t give a healthier person our infections? Well it’s because the environment within the CF lung is different to the people who don’t have CF. If you want to get really sciencey here, a few examples would be, differing expression of receptors on mucosal surfaces, types of inflammation, airway liquid and electrolyte composition… and if you know what any of that means, then you deserve a pint. Anyway what I’m trying to say here is that the bugs that cause infection in CFers adapt to the unique environment of their lungs. It is thought that once these adaptions occur, some strains of bugs become easier to transmit to others with CF. Some types of bugs cause infection within CFers but are rarely encountered in other individuals. Therefore the bugs which CFers sometimes carry are rarely a risk to other people who do not have CF. Make sense?!

So that’s all the research and facts. Now what about the other side of it (or should I say, the view from the other side…😬) and that’s the effect it has on our mental health. Before doing this research, I always felt disheartened and, I’m gonna say the word, contagious, whenever a doc or nurse or whoever sees me at the hospital for an appointment, wipes down everything that I’ve either touched or coughed near. It always made me feel contagious but after doing copious amount of research, I feel reassured that it’s totally necessary, even though it sucks.

For me, I’ve always grown up with the fact that I mustn’t meet other CFers, and being segregated in my own room as an impatient. Which actually, thinking about it now, wasn’t very pleasant in Paediatrics because there were times I had to walk out of my room and pass really sick kids and babies. And because I was usually feeling much better after a couple of days (thanks to IVs), I would always feel so guilty that I had a whole room to myself, sometimes with an extra bed for mum or dad to sleep in. I understand it all now, of course, but back then I felt terrible! I wanted to swap my room for someone who really needed it. (I know I really needed it too but I’m a soppy old bugger so that was my problem!)  Anyway! As I was saying, I’ve never known different compared to the people who were used to meeting each other until one day someone said ‘no more!’. It must’ve been so tough for them…

Like I said, I grew up never mixing with other CFers. Which is totally unfair. Because the only people who know exactly what you are going through (or similar) are the same people who you can’t meet up with and chat over a coffee. This is why social media has become so important as a way of communicating with other CFers.

It’s not the same though. Sometimes talking on text doesn’t quite convey the tone or message you want it to. But unless you Skype everyone, it’s the best we have and for everyone’s sake, the safest too.

And if you think that meeting another CFer who has the same bugs as you is okay, you’d be wrong. Because for one thing, you or they, might have a different strain (even though it’s the same bug) and the other most important thing, you just don’t know if you have picked up another bug since the last sputum test.

It all boils down to the fact that cross infection is a pain in the backside, limiting the amount of time spent with other CFers and the anxiety of meeting another. But at the moment it’s unforgivably necessary. I believe it’s one of the best options to stay as healthy as possible.

To reiterate, us CFers aren’t contagious to the ‘healthy’. In fact, the ‘healthy’ are more likely to be contagious to us! So if you have a cold, or flu or any type of chest infection then I have probable cause to sprint away from you, screaming, as fast as my lungs will let me!