They say that hell is crowded, yet,
when you’re in hell,
you always seem to be alone.
& you can’t tell anyone when you’re in hell
or they’ll think you’re crazy
& being crazy is being in hell
& being sane is hellish too.

~Lost – Charles Bukowski~

Despite my outward calm, inwardly I was being crushed by despair. Resolutely holding back my tears, I methodically packed my bag. After five long days in hospital, alternating with four even longer sleepless nights, I was now heading home, none the wiser as to the cause of my myriad of symptoms.

I still had to get the results of my lung biopsy, but no one held out much hope that it would be helpful. It felt like everyone had abandoned me, and I was now left to cope as best I could on my own…and my ability to cope had hit rock bottom.

Two days before, the admitting respiratory physician had begun to prepare me for this probable outcome. Booked for a lung biopsy the following day, it sounded like he was now regretting his decision that such an invasive test might help delineate the cause of my new systemic symptoms. He voiced his opinion that my drenching sweats and chills had nothing to do with my lungs. That night I cried myself to sleep…stifling my sobs so as not to disturb my roommate…my despair suffocating me and any semblance of hope eluding me.

Two months before I had finished a month of antibiotics for a presumed lung abscess that had occurred in an area of infarcted lung following a pulmonary embolism. I had appreciably improved, but my ongoing productive cough and pleuritic chest pain were shortly joined once again by dizziness, nausea and fatigue. I was unable to knit or even write…and it was writing that had kept me sane during the vagaries of my seemingly never-ending collection of illnesses. My brain joined my body in spiralling down into the depths of despair.

I’d had a hospital admission four weeks after stopping my antibiotics, but was well aware my regular respiratory physician had only admitted me because I had cried…desperate for an answer as to why it felt like I was dying…despite my normal blood tests. He discharged me the following day, blaming my myositis for my debilitating fatigue. “Of course you feel like crap,” he said. “You have a crap disease.” He put me on low-dose erythromycin, hoping that its anti-inflammatory effect would help relieve my ongoing chest pain.

A month later, ten days of sweats and chills eventually drove me reluctantly back to the Emergency Department. Yet again, my bloods were unremarkable, and the cause of my symptoms continued to be a mystery. I was validated by a long-time Emergency physician who shook his head in confusion and said, “Surely they don’t think you are tachycardic, tachypneic, and dripping with sweat because you are stressed?”  I just shrugged…what could I say? Perhaps they did…but they hadn’t said it out loud! It felt like the organised lung biopsy was like ticking a box – once it was normal, there would be no further requirement for anyone to actively engage their brains.

Visiting me on the morning of my discharge, my rheumatologist was sympathetic and squeezed my hand, but he had no words to comfort me. I felt shattered, incredibly sleep-deprived and already well aware of the dearth of good news. I nodded wordlessly as he told me to stop my antibiotics, as there was no evidence of an infection. My symptoms weren’t consistent with myositis. Maybe they were a side effect of the Myfortic, but I needed to finish weaning my prednisone before he would consider ceasing it. He didn’t tell me I would get better. Even he was losing hope.

My regular respiratory physician breezed in and reiterated what the admitting physician had said — that my new symptoms had nothing to do with my lungs. I raised an eyebrow and looked at him, not so much in disbelief as I already knew that was what he thought, but did he really want to jinx himself by saying it out loud? He brushed away my sarcastic retort, asking why it felt like I was dying if there was nothing wrong with me?  “We’re all dying,” he replied. “Maybe,” I said, “but not as quickly as I am!”

I still thought he was wrong, but I was too unwell and too tired to argue. He may have thought that I was capable of cognitive thought. In actual fact, my fatigue and brain fog meant I was at a complete loss about what to do next.  I went home to wait to get sick enough for the insidious pathological process trying to destroy me to make itself known.

Over the week I sent my respiratory physician three texts outlining in detail why I still thought there was something wrong with my lungs. I felt like my ability to verbalise my symptoms must be deeply flawed…due to both my illness and my distractibility. What was I not saying that he needed to hear?

On the morning of my follow-up appointment with my respiratory physician, my husband was waylaid by the radiologist as he walked into the X-ray department. He had just seen my lung biopsy report. It showed a fungus…probably Aspergillus. As I read the report my husband texted me, my heart suddenly lightened. No longer would I have to fight. Finally, I had an answer. I didn’t know exactly what it meant, but surely it had to mean something.

I resisted the urge to Google Aspergillus, knowing from long experience that it is always dangerous to Google something you know nothing about. Worst-case scenarios tend to leap from the page, panicking the unprepared. I would wait patiently to hear what my respiratory physician had to say first.

When he walked out to the front desk and looked at me, I knew immediately that he had already seen my results. It was definitely not what he was expecting! He muttered something about maybe he should have listened to the patient instead of the registrar. He added that he would thank the admitting doctor for having the courage to do what he would not have done! He then went through the possible disease process and probable treatment. The logical assumption was that this was the cause of my ongoing systemic symptoms. He would discuss me with the Infectious Diseases consultant and send me a script for the recommended anti-fungal.

Only later would I Google Chronic Pulmonary Aspergillosis and find that I had two common risk factors: long-term prednisone, along with my underlying lung lesion after my Pulmonary Embolism. I also ticked every symptom: productive cough, chest pain, sweats, weight loss and fatigue. Of course, these symptoms are also vague and could be blamed on a multitude of disease processes. Maybe someone could have thought of it earlier, but it is very rare. Not as rare as myositis, but rare nonetheless! I had never heard of it anyway.

A friend asked if I was annoyed that my symptoms had been brushed off for so long, but I understood where my specialists were coming from. I have been in their place.

My regular respiratory physician was being logical and sensible. There were no cold, hard facts that definitely pointed to an infection. Only the scattered history of an obviously stressed and unwell doctor. It was easy to blame my symptoms on any number of things, and only the tincture of time would eventually delineate between them. As I have said frequently during my illness, I’ll just have to wait to see if I get better or get worse.

I have sat down with a patient on their third presentation to the emergency department with low back pain…addressing their concerns and giving reassurance. My respiratory physician did this for me…which, while helpful for my mental health, was thwarted by the persistence of the ongoing disease process.

When the admitting respiratory physician saw me in the emergency department, he took the time to carefully listen to my story. He had the feeling that something wasn’t right, even if he wasn’t sure what it was. Later, he doubted himself…probably thinking that he had over-reacted because I was a doctor. But in reality, he had not!

I have had the same experience when looking after the adult child of a friend. As he gave the history of his knee injury, alarm bells started going off in my brain. But then I worried that it was my imagination running riot because it was someone I knew. Eventually, my suspicions were vindicated…a popliteal artery dissection resulting in him going urgently to the operating theatre.

I also struggled with my dislike of making a fuss and complaining. I am definitely a better doctor than I am a patient! I am much better at advocating for my patients than I am at advocating for myself. I know too well how doctors look at frequent presenters to the emergency department. Why do they keep coming back when all their investigations are normal? But sometimes it takes time for a disease process to make itself known. I had started to doubt myself and what I was feeling.

I’ve also found that being dramatic is much more effective as a doctor than as a patient. I tend to be very calm at work, so if I think a patient is dying, everybody immediately listens to me. But as a sick patient with a scattered brain, I just looked illogical and anxious when I complained that it felt like I was dying. It was very frustrating, and it was challenging not to be taken seriously when I felt so unwell.

Once I had a diagnosis, my anxiety lessened, and I was better able to cope with my symptoms. I didn’t mind feeling like I was dying as long as I knew why. I needed someone to listen to me, but most of all, I needed to listen to myself and have the courage…and the energy…to keep fighting for answers.

those who escape hell, however,
never talk about it
& nothing much bothers them after that.
I mean, things like missing a meal,
going to jail, wrecking your car,
or even the idea of death itself.

when you ask them,
“how are things?”
they’ll always answer, “fine, just fine…”

~Lost- Charles Bukowski~