Lately I’ve been feeling the need to write again – to write my own stories, not just “work” writing. Several ideas have come to mind in the past few days, but I think it’s time to tell you a particular story: the night I went to the emergency room in China in the middle of the night, a bit over three months ago.
I wrote about my first visit to a nearby Chinese hospital, and my diagnosis of asthma, four months ago. I improved rapidly once I was put on the steroid inhaler. Two weeks later, the doctor reduced my steroid dose. I was feeling much better, my chest sounded clear, so it seemed I was out of crisis mode. The doctor did note that blood tests I’d done earlier indicated that I’d had a chest infection, but I seemed to be over it. Everything was going well. I was feeling physically better than I had in weeks, and I had managed the local hospital procedure by myself quite effectively. I had even found a way to make an appointment online. This was tricky because most of the ways to do this require entering a Chinese national ID number – my passport number was not accepted – but I found a work around. I felt confident making and attending appointments by myself, and managing all the steps of the process. I left feeling really encouraged.
Less than a week later I was in emergency struggling to breathe.
With the benefit of hindsight, I’d never actually kicked the original chest infection that triggered the adult-onset asthma. Two weeks of steroids suppressed the infection, and when the dose was reduced, the infection came raging back. In addition, it turns out that my own unique presentation of asthma doesn’t include wheezing – my chest sounds quite clear even when my asthma is flaring up. (This means it’s easy for doctors to underestimate how bad my condition is. It’s also part of why it took me so long to recognise that I had asthma.)
I deteriorated quite suddenly. I was feeling great at the hospital on Monday, started struggling a little on Tuesday afternoon – breathing was heavy and I needed ventolin – and started feeling quite tired. I went to bed early but woke an hour later with an asthma attack. My husband asked if I wanted to go to the hospital, but I said no, I would just go back on the higher steroid dose… Well, I tried to say that. I was having trouble getting words out between laboured breaths. Which I now see wasn’t a good sign. He was very dubious but didn’t press that matter. To be fair, I thought he meant go back in general, not go right that minute. I know, I know. Perhaps I can blame lack of oxygen for my poor judgment?
The next asthma attack happened two hours later, and I started throwing up.
Two hours later came asthma attack number three, with more throwing up.
This time I was afraid to try to go back to sleep, worried I’d wake up again not breathing. Here the beauty of worldwide friends came into play. I talked to one friend in New Zealand (four hours ahead) and one friend in Tanzania (four hours behind) who were both awake, and when I gently explained the situation and said I was thinking maybe I needed to go to hospital they both told me in no uncertain terms (with capital letters and exclamation marks) to wake my husband up and go right now! I worried about it for another few minutes, but I did wake him, and we did go.
We arrived at the hospital at 3am. Within twenty minutes I had been seen by the on-call doctor, issued a stack of medicines, and was in the observation room with an IV and a nebuliser. An hour later I had a fourth asthma attack, and threw up all over the observation room floor (and myself). At this point the doctor was brought back to see me. She ordered more tests and medicines. I didn’t realise at the time just how out of it I was. I was woozy, and having trouble concentrating. Trying to communicate medical terminology in my second language was a big struggle. Although to be fair I was struggling to find words in English at that point, let alone Mandarin. I felt sort of under water – everything was a little fuzzy, both sound and vision. Not indistinct, really, just difficult for me to make out. Through it all my patient, kind, and loving husband sat beside me, looked after me, held my hand (carefully, around the cannula!) and just generally made my life better by his presence.
Around 8am my final IV finished and we were able to pick up some final medications, pay the bill (only $150 for everything!) and go home. My husband was certain I’d had five IVs but I only remembered three; when I checked the bill (I translated it later to find out what I’d actually been given!) of course he was right. Actually, he was right in general. In the cab on the way home I promised him that next time he suggested the hospital I’d go, no arguments. All told I had five IVs (one saline, two glucose, one steroid, one broncho-dilator) and two nebuliser treatments (one steroid, one broncho-dilator). I was also prescribed antibiotics for the infection I clearly still had (blood tests showed my white cell count still up). I even had the less-than-fun experience of an arterial blood draw through my wrist to check my blood oxygen levels.
We went back to the hospital for a follow-up with the respiratory doctor I’d been seeing. He did a bit of a double take when he realised the night of my asthma attacks the AQI was 15! Another sign that it wasn’t pollution I was reacting to. He made me take another blood test and wait around for the results, which thankfully took only 40 minutes. With my white count still high he prescribed a second course of antibiotics. This was only two days before I was scheduled to fly to Australia, and I was still quite weak and tired. I’d been telling my husband all week I’d be fine to fly on my own, but the morning before I was supposed to leave I started to worry – was I too sick to go? Would I even be able to enjoy the trip if I did? But within hours the new antibiotics kicked in and I immediately felt better!
While in Australia I was able to see a doctor and have a conversation about my asthma and its long term management. This was a revelation, in more ways than one. The Chinese medical system follows the cultural system, in which experts tell others what to do, and they obey. The Chinese system is predicated on the doctor giving the patient instructions and medicine to last a week or so, and the patient coming back regularly. The patient does not need to know much about their condition, medicines, or management – that is the doctor’s job. The patient’s job is to keep coming back. With my Australian doctor, I was able to ask more questions – both culturally and linguistically. For the first time I realised how long term this condition will be. Having been hospitalised, I must stay on the higher twice-daily steroid dose for at least a year. A few weeks later I actually upped the dose a little (from four puffs per day to five) which finally seemed to balance me.
It’s been quite a steep learning curve for me. Learning to recognise a new set of symptoms, a new set of early warning signs. Learning to feel a new part of my body as it slowly malfunctions. Learning to accept yet another physical limitation, yet another frustration.
I was motivated to finally write this story because I’ve been struggling with the asthma again in the last two weeks. This has coincided with heavy pollution, which seems to indicate that while it wasn’t initially a cause of my asthma, pollution is something I now need to be more concerned about. I took a short course of oral steroids and felt better for a few days, but today it came back suddenly, with a rapid deterioration over three or four hours. I started writing this post because although it was bedtime and I was tired, I found myself afraid to go to sleep while my breathing was laboured. Afraid to lie down flat, even. But now the post is written and my breathing is considerably better (perhaps due to ventolin kicking in, and humidifier on high) so I think it is time to create a pile of pillows to prop myself up on, and try to get some sleep.