It is not so much trying to keep alive
As trying to keep from blowing apart
From inner explosions every day.

~Prisoner at a Desk – May Sarton~

My head whirled while my pulse pounded like a drum in my ears. I was dizzy, nauseous and tachycardic, and I had almost reached the point of giving up. I had no idea what to do next. The easiest thing would be to just die. That’s what it felt like my body was trying to do anyway.

“What do your specialists think?” my General Practitioner asked. I shrugged. I had no idea. “Maybe they just think I’m depressed,” I ventured. She shook her head. “You are sick!” She handed me a script for Clarithromycin and told me I had to take it. She was happy to take the blame if my respiratory physician complained.

My medical history was complicated. On two immunosuppressants for Immune Mediated Necrotising Myositis, bilateral pulmonary emboli, then a probable lung abscess in an area of infarcted lung…and now once again I was becoming ever more unwell.

Every couple of weeks I would plop myself down in front of my GP to update her on the latest chapter of my ongoing saga. Some weeks I would be positive… minor improvements giving me a glimmer of hope. But most weeks resulted in me debriefing the latest medical trauma my ever-multiplying diseases were causing me.

Four weeks before, I had finished a month of Augmentin Duo Forte for a probable lung abscess. Systemically better, my productive cough and chest pain were ongoing. Two weeks later, the onset of chills sent me back to the Emergency Department. I had been feeling sicker all week, and this was the last straw.

I was sent home with a script for another week of Augmentin Duo Forte…but I could tell my respiratory physician was simply pandering to the anxiety that he thought five months of ill health had induced in me. My typical calmness in the face of chaos was being replaced by frustration.

My General Practitioner was probably the only one of my doctors who had heard my whole story directly from me. She would listen, give advice, plan the next possible step, and most importantly…reassure me that I wasn’t going mad! It sometimes felt that she was the only doctor who believed I was actually sick.

Everyone else only heard part of my story. Instead of getting it directly from me, it was mostly passed from registrar to consultant, or from consultant to consultant during handover or Multi-disciplinary Team meetings. They would then look at me through the lens of their assumptions…their own narrative negating what I was desperately trying to communicate through my brain fog and fatigue.

Eventually, after four Accident and Emergency presentations and two hospital admissions, I was diagnosed with Chronic Aspergillosis after a lung biopsy. I breathed a sigh of relief. I knew something was wrong. My symptoms were finally validated. I thought the fight was now over. No longer could they fob me off. I was now on anti-fungal medication and was looking forward to slowly getting better.

But instead, the struggle to keep alive was ongoing. I had a week of energy, no chest pain and less coughing, along with the ability to be active without tachycardia…probably due to a perfect alignment of medications and immunoglobulins. Then, over a few days, I would spiral down yet again.

Two more ED presentations followed in quick succession. I was told how well I looked, while in vain I tried to explain how unwell I felt. No one wanted to increase my dose of anti-fungals. My regular respiratory physician ventured that I might have had a second infection, but it was still too soon to throw random antibiotics at me.

At my last ED presentation, the on-call respiratory physician hypothesised that my pleuritic chest pain, productive cough and tachycardia were all due to my myositis. I was speechless! I did have Aspergillosis after all…how could he just ignore that? After spending most of the previous nine months in a daze, I was now angry. And being angry at least gave me enough adrenaline to connect the neurons in my brain.

Once home, I decided that it would be up to me and my General Practitioner to figure everything out. I no longer had any hope that any of the respiratory physicians would be willing to think outside of the box in their search for a cause for my symptoms. They would all toe the party line that I was unwell because of my myositis and hand me back to my rheumatologist to try to puzzle it out.

Not surprisingly, my rheumatologist had shrugged and said he had no idea. It didn’t make sense to him. I agreed with him. My sweats and chills, fatigue and nausea were not due to my myositis. This felt very infective…but with no fevers and normal blood tests, it seemed that everyone was assuming I was acopic, that being unwell for nine months had tipped me over the edge of sanity.

I had read a lot of the literature over the months, but the Medscape article on lung abscesses was up to date and succinct… essential as I was still very unwell. That afternoon my pulse rate had gone up to 155 just chopping up a few potatoes!

I scrolled down the list of possible pathogens…anaerobes were at the top. But I had already had a month of Augmentin Duo Forte, which should have covered these. Then came a paragraph on atypical causes that are more common in immunosuppressed patients. These included fungi (which I already had), Actinomyces, and Nocardia.

Actinomyces were treated with penicillin and should have also been covered by the Augmentin Duo Forte. The treatment of choice for Nocardia was Bactrim…and I still had two boxes left from when I was on Pneumocystis pneumonia prophylaxis while on high-dose prednisone! Bactrim was where I would start. I knew my General Practitioner would agree. If it didn’t work, she could choose the next option!

Doing my best to be a “good” patient, I texted my respiratory physician to inform him of my plan and rationale…giving him the opportunity to push back or give me a different plan. He probably just rolled his eyes…the trials of having a doctor patient who Googles the latest literature. With no reply, I started my Bactrim at the recommended dose – 10 mg/kg of trimethoprim – 2 tablets bd.

By the third day of Bactrim, I was already feeling better. By the fifth day, I was walking over 5000 steps a day instead of my usual 2000. I was hungry. I was energetic. I dusted and read books. I knitted and wrote stories. And I waited…not yet willing to believe that it could possibly last…

When I saw my General Practitioner, she asked if I had seen my discharge summary and rolled her eyes. I had! The Respiratory Physician obviously had no idea. I might even have called him an idiot. How could he blame everything on my myositis when I had Aspergillosis! I told her this was now up to us. She said to stay on Bactrim and gave me a referral to see an Infectious Diseases Specialist.

Ten days later I had a phone consult with an Infectious Diseases specialist in Brisbane. He was knowledgeable and logical. He listened carefully to my story and asked pertinent questions. Because of my systemic symptoms and immunosuppression, he wanted to treat me as Invasive Aspergillosis. He also agreed that because I got so much better on Bactrim, I could likely have Nocardia as well.

He would change my antifungal to Voriconazole and would ring me in two weeks to see how I was. Maybe finally I could relax, knowing that I no longer had to try to work everything out myself!

I don’t mind when my specialists tell me that they have no idea what is wrong with me. It’s blaming another disease process that doesn’t make sense, which irritates me! This was not medical misogyny. It wasn’t arrogance and an unwillingness to listen because I had opinions. It was purely because I didn’t fit the normal narrative, and so they had no idea what to do with me.

Most of their patients had illnesses they were well versed in, with recommended investigations and treatment well researched with randomised controlled trials. But there was no research data for any of my diseases. Nothing about my story was like any patient they had ever seen before. I had two rare diseases which interacted in weird and wonderful ways, everything obvious obscured by my immunosuppression.

Added to that, they didn’t really know the whole story! They only knew select bits that had been highlighted by others. I constantly had the feeling that they thought my symptoms were due to stress and anxiety. Even pointing out my tachycardia on minimal exertion made no difference. I had no fevers and my blood tests were normal…how could I possibly have an infection? “But I’m on Immunoglobulins which dulls my inflammatory response” I’d tell them. Their eyes would glaze over, and they would look at me, confused and doubtful.

For the first time, I really appreciated the skills of the generalist doctor…both in the Emergency Department and General Practice. We are used to seeing illnesses every day that we know nothing about. We have to listen carefully to the patient’s story for clues. We have to go back to first principles and think laterally. The most important of these principles is this: is this patient sick? I knew I was sick! Every doctor and nurse that I saw in the Emergency Department knew I was sick. My GP knew I was sick. But I was so unwell it was near impossible to explain to my specialists how ill I felt because it just made me look melodramatic!

I will now have much more sympathy for my melodramatic patients. They may be just trying to explain how sick they feel. I will also continue to be very cautious about frequent presenters to the ED who have yet to get a diagnosis. Hopefully I won’t be so sympathetic that I will be unable to do my job effectively, but I think overall it will make me a far better doctor. I will continue to encourage my patients on the importance of a regular General Practitioner. They may be the only doctor who has actually listened to their whole story.

“Listen to the patient; he is telling you the diagnosis.”
William Osler

This could be paraphrased as:
“Listen to your patient; she is telling you her story.”