anomaly/anomaly

Me included!

Last week I had my first hospital trip of the season although unlike the football, I was hoping to delay kick off until at least September. It was the first visit (not counting my outpatient season ticket) since my tracheomalacia diagnosis so it felt a bit like a pre-season friendly to test out some of the tactics I’d been revising all summer.

There were two things I was dreading from my meeting my hospital opponent:

1. Standard asthma protocol: antibiotics, nebulisers, peak flow meters and a shed load of steroids). This has happened to me throughout all of my previous matches in hospital but often, doesn’t actually help. Particularly worried about steroids and the effects of taking them on a regular and long term basis.

2. CPAP: Continuous Positive Airway Pressure. One of these massive masks being strapped to my entire face and having air continuously blasted down my airway while I’m struggling to breathe. Here’s a nice little photo reference of the lovely CPAP mask.

Even though I know that ultimately, CPAP will help to artificially stent my airway open through the positive pressure, I find the concept quite daunting and a little harder to get my head around especially when I’m out of breath anyway.

Match report

What actually happened during my first hospital fixture of the season was really refreshing.

• Each member of staff I encountered in my journey through the hospital listened to me
• They all read the letters I had with me (these are written by my consultant explaining my condition and making suggestion of what to do in an emergency)
• They saw asthma in my records but didn’t assume that was the only problem and didn’t start immediately with steroids
• I was seen immediately by a respiratory doctor who wasn’t completely familiar with the condition but they called the consultant to flag my visit in the hospital and to ask for advice
• A member of my consultant’s team came out to see me, listened to my symptoms, explained the problem, came up with a solution and gave me an email address that I could use to ask any additional questions in future

All of this was a dramatic change from last season, it was in a different league. I was listened to. I was able to explain my symptoms and nobody assumed anything. This was incredibly important to me as often, I worry about being able to communicate effectively when I’m struggling to breathe and I worry that I’m not understanding the signs my body is giving me sometimes. It made the process much less stressful and intimidating and again reminded me just how lucky we all are to have the Premier League NHS there for us both in and out of season.

Sorry for all the football references, I committed to using them half way through but now feel a bit silly as I know nothing about it.

Are you thinking “What the hell is tracheomalacia?” – read my first post.

I ambitiously set myself a goal in my head of making it through the summer without having any trouble with my breathing. The date (1 September 2018) became more concrete in my mind as I breezed through July without any issues…if I made it to September, the date that marks a new academic year, kids back to school and the end of the summer holidays seemed to be realistic and would to me, indicate that I’d had a few months of being back to normal Olivia again.

On Monday 13 August I had a really positive and productive day at work. I’d bought a bike to start cycling with Mum in an effort to improve our fitness and I’d sorted out all kinds of boring life admin that I’d been putting off for ages. Monday was a good day! I went out for an evening walk with Mum, feeling completely fine and happy and then a few hours later… cough, cough…cough.

The cough itself would be absolutely fine (yeah it sounds a bit weird, it’s loud and sounds worse than it feels), it’s not hard to deal with. The thing that bothers me more is that it completely takes my breath away. It makes the standard ‘in-out’ breathing quite uncomfortable, laboured and just not easy at all.

Even then, it was okay. I knew what the plan was. I knew that I needed to increase the amount of time I was spending on my saline nebuliser – let’s clear this. It’ll be fine, it’ll be fine…we have a plan. So, I threw myself in to taking more of my nebuliser, more inhalers and just decided to be a little kinder to myself. I’d already been making much more of an effort to take my medication religiously, I’ve been hellbent on doing everything I can to put myself in the best possible shape for winter.

I went to work on Tuesday, admittedly I didn’t feel great but I didn’t feel as awful as usual and thought I’d give it a go. This was a mistake, I should have stayed at home. The coughing became more severe, the breathlessness became too much to ignore so I took myself home and started to allow myself to consider that I might not be very well.

Weirdly, I’d forgotten how odd it felt to be breathless again. To be breathless getting out of my car, to be breathless when making a cup of coffee and to find it really uncomfortable to just sit and breathe at rest. It made me zoom in and focus on listening to my body.

I continued with the nebulisers and inhalers but I just couldn’t shake the feeling that I wasn’t getting better and wasn’t getting any relief. I was starting to get more exhausted and uncomfortable but weirdly, the rest of me felt ‘well.’

But if I felt ‘well’ what was it that caused the cough and the breathlessness? I didn’t have a cold, I didn’t have a temperature and I didn’t have any aches or pains. It didn’t seem to me as though I had an infection. I wasn’t really sure what to do next to get relief (being out of breath is really uncomfortable, especially for a couple of days) so I referred to the letter from my consultant about what to do in am emergency.

The ‘plan’ (you know how much I love plans) was to start a course of antibiotics immediately. Now, I’m really not a massive fan of over-using antibiotics or using them when I don’t really need to so I wasn’t keen to start these as my body really wasn’t giving me any signs of infection.

The point here is that when I feel unwell, I doubt my body. After being told for years and years that my breathing issues were ‘just asthma’ I still can’t shake the feeling that I don’t know my body. It’s useless at giving me signs, my breathing often deteriorates without any warning and so I’m constantly second-guessing what it’s doing. This is why I rang a GP for advice as to whether to start the antibiotics given I wasn’t seeing any signs of infection. They said that I couldn’t be too careful with my airway and that I was a complicated case so should always be over-cautious and start the antibiotics. I did this because I love to stick to a plan!

A few days later I was still struggling and my breathing was getting worse so I decided to go to the hospital. This time, after lots of investigations that included stethoscopes, blood tests and x-rays my suspicions were confirmed – no infection. It actually turned out that some of my medication had been causing me issues. The saltiness of my nebuliser had been drying out my throat, irritating it and causing me to cough… damaging the problem more. Argh! I’d only been trying to follow advice from my consultant.

I guess the moral of the story for me is to listen and trust my body, see myself as an expert in me and just continue to learn how best to handle it in terms of how much/little I need my nebuliser and finding the pattern that works best for me. Big learning curve, feeling like my airway is very similar to The Princess and the Pea – one of my favourite fairytales!

Are you wondering “What the hell is tracheomalacia?” – give my first post a read.

I’m a person that really likes looking forward and is usually pretty focused on what will be the ‘next step.’ I don’t quite have a concrete 5 year plan that’s engraved in to stone but I like to have a couple of things to work towards. I guess I generally quite like to feel a sense of progression both personally and professionally. Although I understand that we can’t all be as lucky as Mystic Meg with her crystal ball, having big question marks over large elements of the future is really quite unsettling.

Why don’t I have all of the answers?

I’ve already acknowledged that I’m not Mystic Meg, but I should also say that I’m well aware that everyone is different and each individual experiences life in very different and unique ways. It’s not that I want to know whether or not I’ll finally like the taste of porridge in 5 years time or whether I’ll have a certain type of job. Instead, I’d like to have an idea of how things might pan out for me health-wise.

I’d love to know whether it’s likely that I’ll be able to hold down my well-loved job in the next 5-10 years. I’m more than a little bit curious as to whether I need to start thinking about the reality of losing my voice or whether I’m just over-worrying and can relax about that for the next couple of years. Essentially, I want to know what my quality of life might look like as a general, ballpark. Of course, I don’t expect predictions with 100% certainty but I’d love to get a sense of the general pattern of events experienced by people with tracheomalacia. Why? Because I like being prepared so that I can start to get my head around things.

I don’t have the answers to these questions mainly because not even the medical professionals know.

Subglottic tracheomalacia isn’t something that has cropped up in the scientific literature, it’s not really been identified on many hospital wards or been widely talked about in clinics. This is partly because it’s quite rare, but also, it hasn’t long been identified. It’s only something that has started to be diagnosed over the last decade, in a small subset of patients.

Sample size

This has a couple of implications, mainly because it affects a relatively small group of people, there’s not much data being collected about it yet. Thankfully, this is about to change as they’re launching a national (UK) based database of people with tracheomalacia. This is an incredibly positive step because:

• we can start measuring people over periods of time
• we can see how people with tracheomalacia respond generally as a population, not just as individuals
• a national database is a national resource to be fed in to the academic literature
• it’ll also help raise awareness of this ‘group of people’ and hopefully, in turn, the condition
• it allows researchers to share, access and develop a knowledge base

Let’s hope this makes it easier to answer questions in future! For now, I’ll have to learn to embrace the unknown and uncertainty to focus on what I can control.

If you find yourself thinking “What the hell is tracheomalacia?” – give my first post a read!

Tracheomalacia in adults isn’t very common, or, it might just be that it isn’t very well diagnosed at the moment.

First of all, there’s loads of different things at play that aren’t easy to separate out from one another. Some people have congenital tracheomalacia, they were born with it. This could be due to underlying genetic conditions that mean the walls of the airway are already weaker before they’ve even taken their first breath. Or in some cases, they’re not sure what causes it at birth but it has been seen in premature babies. I was born 2 months prematurely but we’re still not entirely sure as to what ‘type’ of tracheomalacia I have because the second type is ‘acquired.’ I was hoping to ‘acquire’ a nice house in my late 20s, maybe a holiday but definitely didn’t think I’d acquire floppy cartilage.

Patterns and anomalies

Part of the reason there’s a lot of uncertainty as to the causes of tracheomalacia is because people with it often have other stuff wrong with their lungs. Conditions such as asthma and chronic bronchitis which are inflammatory and cause the trademark difficulty in breathing after catching infections.

The thing is, asthma is far more common and well-known. We can all think back to asthma kids with blue inhalers at school, we’ve heard people talk about pollution and asthma flare-ups on the news. When push comes to shove, I think most people are pretty comfortable with how you treat asthma. People talk about it, it’s pretty normal and nobody glazes over when you say you’ve got asthma.

Medical professionals know about it, there are protocols that exist, observations and measurements that can be taken that help people to know what to do when you’re running out of puff.

Because these things are so well-established, I got in to a bit of a cycle and I don’t think it’s a unique cycle to be in.

3 years old: asthma diagnosis and dungaree fashions (it was the 90s after all!)

3-18 years old: normal toddler, infant, teen sprinkled with the occasional blue inhaler and a handful of doses of oral steroids. Nothing to report apart from “being a bit wheezy in winter.”

18-28 years old: progressively more awful winters in terms of breathlessness, infections, hospital admissions, Darth Vader wheezes and shed loads of steroids, antibiotics, nebulisers and chest X-rays.

• During this time I was averaging about 5 trips to A&E and about 7-8 high dose courses of steroids per winter
• In A&E, it’s an emergency situation and you are treated for the most acute problem. For me, that’s breathlessness and infection.
• It says that I have asthma on my medical records and so, I am treated aggressively for a flare-up of asthma.
• This makes sense at the time because I’m usually not able to speak and I’m being treated for a problem that fits with patterns of previous admissions. It’s also completely understandable that this protocol is followed because it’s A&E and doctors want to help me breathe again
• The difficulty has been that for the last 7 or 8 years, I’ve not been responding in the normal ‘asthmatic way.’ My peak flow has been erratic at best. It’s not showed improvement after nebulisers. I’ve not improved after steroid treatment and, more importantly for me, it just hasn’t felt like asthma. The wheeze didn’t feel the same, my breathlessness just wasn’t the same and I knew I didn’t feel right.

The cough

I mentioned in my first post that the cough is what ultimately led to my diagnosis. This is absolutely true. For the past 7 years, I’ve been under various respiratory consultants in Sheffield, Oxford and now in Manchester. They’ve tried various combinations of inhalers, medication and lung function tests to unpick the problem. It wasn’t until December 2017, after a month of hospital admissions and puzzled doctors that I got to see a doctor who just simply asked me to cough.

She asked that question and knew how to recognise the distinctive ‘tracheomalacia‘ cough because she had spent 3 months attached to a specialist centre. Not because it’s something that had been widely discussed in training and not because it had popped up a lot in clinics or on the respiratory wards. That’s why I want to talk about it, I want to raise awareness of the existence of tracheomalacia and the importance of looking for answers that might not fit with the normal patterns.