Shouting in to the Google void
When I got the diagnosis of subglottic tracheomalacia. I sat there bleary-eyed and not really able to take stuff in. I’d just had a bronchoscopy which involves shoving a thin flexible tube (about the width of one of your finest HB pencils) up your nose and down in to the back of your throat. This all happens while you’re awake and after snorting some acrid ‘numbing gel’ under some mild sedation that makes you a bit drowsy but still alert to the fact that there are 4 nurses holding you down and a doctor navigating the camera down into your windpipe.
It was about an hour after my bronchoscopy when myself and my parents were ushered in to a room to talk to the consultant about what he’d just seen on the big screen. He told me that he was expecting to find something called tracheobronchomalacia (TBM for short). This would’ve meant floppiness further down the windpipe, near or in to the bronchi (where the windpipe/trachea splits in to two before reaching your lungs). Instead, he found a floppiness and the top of my trachea — near my larynx. This was apparently more complicated, rare and less treatable as the malacia is near some pretty important structures.
It was a lot of information to take in and was very overwhelming, in part due to the nature of the news (it wasn’t expected at all and wasn’t pleasant to hear) and partly due to the fact that I was still a bit drowsy from the bronchoscopy. I was so relieved my parents were there to absorb the information I couldn’t. Between the three of us, we were able to digest the key points and puzzle over the bits we missed out.
“Be careful when you Google it”
That piece of advice from the consultant stood out for me. I love Google. As many who know me, I have a thirst for facts and love the fact that a quick Google brings a whole host of knowledge to our fingertips in fractions of a second. I’m curious about the world and will find myself ‘having a quick Google’ about anything and everything. I’m sure I’m not alone among my fellow millennials when I say that I’ll Google symptoms when unwell, scare myself in to thinking I’m mere moments away from death and then go to see the GP anyway.
Tracheomalacia isn’t something I’d ever heard of before, wasn’t even sure how to spell it at first attempt so I was naturally itching to Google away and unearth research papers, NHS information pages and any articles about it in the news. When faced with the unfamiliar, I always Google it so why not now?
The consultant was warning against search results from America as they offered more experimental and radical potential treatments that are unavailable or deemed dangerous in our healthcare system. As someone who considers themselves to be scientifically literate, I understood his concerns but couldn’t help myself from doing it anyway. I just wanted to read what people were saying about it.
Turns out, there’s not a lot out there
The vast majority of results on my favourite search engine relate to congenital tracheomalacia which is something seen in babies and usually gets better after 18–24 months. This is because in babies, cartilage gets stronger and the trachea continues to grow. Google shows quite a bit about tracheomalacia in babies, including support groups and research studies with some pretty positive outcomes. For acquired tracheomalacia in adults, there’s far less out there that’s on offer from the search engine. Even fewer results for tracheomalacia compared to TBM mentioned above. Location, location, location and age means quite a lot it seems!
It’s okay, I’m being looked after by the right people
I’m sure I’ve spoken before on the blog about how fortunate I am to be under the care of one of the few specialist centres for this type of thing in the UK. I am fully confident and trusting in my consultant, he’s clearly one of the leaders in the field. That being said, they are very transparent as to how limited treatment options are at the moment and are clear that any significant interventions could be up to a decade away.
When I’m at the hospital, both in the clinic and as an inpatient, the message is still the same: “there are no easy answers and this is a very difficult condition to manage.” Again, that’s fine, I understand research takes time. It’s just difficult to be met with a wall of question marks and no relief when you’re significantly unwell and even the most advanced medical professionals are uncertain as to what could be the appropriate next step.
This brings me back to Google
With limited information and my clinic appointments three months apart (a massive chunk of time when you can’t breathe), I turn back to Google. I want to know more, I want insight, evidence of research and to hear from people in a similar boat to me. It’s a really bloody lonely boat at times so I shout in to Google in the hope that something, anything comes back.
What I’m met with is a community of people who are also desperate. They each have different circumstances, different diagnoses and different back stories but all seem to be united in the hunt for more information. They too seem to feel isolated with their condition, frustrated by the lack of knowledge or progress and understanding of their condition. They have unanswered questions. They share treatments, side effects, tips and tricks and signpost resources. They offer help and support each other, building their own communities that fill that lonely gap between appointments. I never knew there was such a treasure trove of lived experience out there, granted, not of tracheomalacia but of other chronic conditions. It hints at a huge disconnect between support provided and support needed and is quite sad to read the desperation in many of the posts on patient fora. The sense of community is strong though and it’s such a useful resource — thanks Google for bringing it within my reach.
Originally published at anomalyanomaly.wordpress.com on November 21, 2018.
