It’s a bit like the Truman Show

Over the last couple of weeks, I’ve been feeling very much like a bewildered Jim Carrey when he finds out that his life is actually a reality TV show. To illustrate this more accurately, I’ll describe some of the details of what has happened including the ‘juicy bit’ which includes a lovely hospital stay.

The backstory

It’s cold season! Naturally, I caught a cold. Weirdly, it came in to full-swing during a mini-break to Barcelona (it’s a pretty strange sensation to feel so rough when it’s so sunny and there’s so much pretty everywhere!) Usual pattern of headache, temperature, sneezing, snot, more snot, more sneezing, chest tightness, cough, more coughing, even more coughing, breathlessness, coughing resulting in breathlessness, more coughing…non-stop coughing…non-stop breathlessness and yep, you guessed it…non-stop coughing.

It’s not getting any better, hang on…I think it’s getting worse

Now, don’t get me wrong. I can cope with a cold! Granted, they’re unpleasant and make you feel quite grim but I know they go away eventually. It’s the after-effects for me which aren’t so easy to deal with. The cold seems to have irritated my airways which makes me cough. The cough (yep, that barking, seal-like cough) is something that causes my airway to shut which results in breathlessness and actually more coughing.

During this time continued to go to work because:

  1. I actually enjoy it.
  2. It makes me feel like me.
  3. It distracts me from how bad I actually feel so I consider it to be almost medicinal?

But I also started to admit that I needed help because:

  1. My cough and breathlessness were getting worse
  2. I was getting really, really tired
  3. I’d been taken off my medication a few weeks earlier which meant…
  4. I had no relief from these symptoms at all…
  5. Even my inhalers were making things worse
  6. My next scheduled appointment with my consultant wasn’t until the end of November
  7. My GP doesn’t know what tracheomalacia is/admits it’s something that only the specialists should advise on
  8. I knew in the back of my mind that if I didn’t get help, I was deteriorating and would end up being admitted to hospital. This is something I wanted to avoid at all costs

I contacted the hospital several times via email and telephone (the mechanisms I’d been told to use if I needed help) and got no response at all. In the meantime, my symptoms continued to get worse so after struggling for the best part of two weeks, I bit the bullet and went to A&E.

The interesting bit

I’m not sure many people describe their patient journey through the hospital, it’s one full of twists and turns so here goes:

  • Emily and I arrived at A&E, checked in and waited about 10 minutes to see the triage nurse.
  • The nurse took my blood pressure, measured oxygen saturation, heart rate and listened to an overview of my symptoms. She also read the letters from my consultant that I carry with me.
  • She immediately found me a bed, alerted other members of staff and I had a cannula inserted and blood taken all within a few minutes. Someone also came along to take copies of my letters.
  • An A&E doctor came to see me within about 30 minutes. Again, she listened to me and discussed what was going on. She suggested trying a nebuliser but then listened to my concerns about it irritating my airway and so decided to ring the chest team for more specialist advice.
  • In the meantime, I was moved to a room in a slightly different area of the department.
  • A doctor from the chest team came to see me within another hour or so of waiting. He told me that my X-Ray looked clear (funny, I hadn’t had a chest X-Ray). He asked me questions, I answered them. It was clear he wasn’t listening as he repeated back to me a couple of things that I had given the exact opposite answer to what he was describing. He repeated that I was on my PARI-PEP nebuliser medication, I wasn’t and I’d already told him that. He told me that my peak flow was stable it wasn’t, but nobody had tested it. Eventually, he said that he’d measure my peak flow and call my consultant and his team for advice. Great….or so I thought.
  • Somebody came to measure my peak flow. It was 280, about 60% of my normal.
  • They came back and said “Your peak flow is fine, the doctor said you can go home now.”
  • I was quite shocked and replied “What?! I thought he was going to ask for further advice?” They responded saying “No, he said you can go home” and also brought another nurse in to the room to confirm this.
  • Feeling confused at this point, I asked if they could check this with the doctor as it wasn’t what I understood the plan to be.
  • The doctor returned and told me that he hadn’t ordered for me to be sent home and that (not one but TWO nurses must have misheard the message). This seemed quite suspicious and started to upset me as at this point, I was just desperate for some help or relief and stated that I didn’t mind going home as I really didn’t want to be in hospital but needed a plan in place first. He then started to say that I had bronchitis and needed a chest X-Ray which was odd, this was the first time I’d heard any of this and a few minutes earlier I had been told by two people to go home. The same doctor ordered for me to be admitted to a respiratory ward, kept apologising and touching my arm and started ferociously scribbling notes and admitting that he needed to seek further advice.
  • I was sent to the chest ward at around 5.30pm, greeted with a nurse who barked “Bed 25” at the porter and was wheeled to my prospective bed. After an hour, a nurse came with a pack of swabs and I was told to do them in my own time and hand them back. I did them immediately and notified several members of staff about them but they were left uncollected right up until I was discharged.
  • I received no water and no food until 8.00am the following morning. Don’t worry, I wasn’t without – my Mum and Emily had bought some for me but the point is, nobody on that ward knew whether or not I had any food or drink until the following day. This is something I find really unsettling, not for me but for patients without a voice or a family member to advocate on their behalf. They can get left behind in a system that is over-stretched and under-resourced quite easily.
  • At about 7pm, I was visited by a chest consultant who I had seen for 2 years prior to my diagnosis, the doctor from earlier in the day and another doctor. They reiterated that I needed to be seen by my consultant or someone from his team as to whether I could be started on CPAP and that they would make arrangements for this to happen the following day.
  • A sleepless night of machines beeping and confused patients wandering around the ward singing and trying to get in to the wrong bed, patients having panic attacks and patients falling more and more unwell. All ward lights were on until after midnight and my ward neighbour continued to watch TV full blast without headphones and remark that I was “too young to be in hospital.”
  • I was seen by a new consultant from the team I’m under who agreed that CPAP was the next and only remaining thing to try. He reminded me that tracheomalacia is a chronic illness with no current fix and that any surgical interventions were years and years away. He was trying to point out that there really wasn’t much they could do to help other than try CPAP but highlighted it only works while wearing the mask so at best, I would maybe have more energy in the day and that I’d need to adapt to life with tracheomalacia as best as I could. He pointed out this as a tenuous and un-welcome silver lining:

“Yes it’s a chronic condition but I guess, the silver lining in all this is at least tracheomalacia won’t kill you.”

  • I’m not so sure that was a great silver lining to hear. Infection associated with tracheomalacia certainly can kill me. He agreed that I needed an appointment in the clinic to try to figure out a way forward and get me on CPAP and that he’d try to arrange this to be as soon as possible. Which is great, but until then, there really wasn’t anything I could do to make myself more comfortable.
  • I was then visited by various pharmacists, a PhD student who shuffled up to me without introducing himself and asked if I would take part in research looking at how asthmatics respond to inhaled steroids by giving blood and urine samples over a period of several hours. I told him that I had tracheomalacia. He looked at me blankly and scurried away.
  • Finally, I was visited by a ward physiotherapist who asked whether I could get around. I replied “Not really, I’m struggling a fair bit at the moment.” She asked what with and I told her that showering and getting dressed were issues for me at the moment. She said “Oh it’s okay, most people struggle with those.” I wondered who ‘most people’ were and was pretty sure she was referring to her sample size of the 80+ year olds on the ward. She said “To help you get dressed, it could help if you lean against a wall for support.” Again, what? Then she asked whether I lived with anyone. I replied yes and she said “Oh, that’s fine then…you’ll be okay at home.” Not sure what the criteria was for ‘okay at home’ but at this point, I just wanted to be anywhere else but in hospital so I nodded along like the dog from the Churchill car insurance adverts.

What now?

Good question. Now, I’m pretty much in a similar state to how I was before being admitted to hospital. I was promised that my appointment would and needed to be brought forward but haven’t heard anything as to how long this would take. If I’m honest, I’m feeling pretty frustrated and hopeless about everything right now. I just want to go back to work and get back up and running as much as possible but feel that any hope of possible ‘relief’ is in the hands of a medical secretary bounded by several hospital systems and too many patients.

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