The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

~Caged Bird – Maya Angelou~

The venetian slats across my window imparted to my room the confining atmosphere of a cage. Towering buildings dominated the view, with only a small patch of sky peaking through at the upper left corner. For the majority of my hospital stay this had been grey and bleak…which after three weeks of being unable to do anything except lie in a hospital bed should have matched my mood…but in actual fact my body was too consumed with survival to give my brain the requisite energy required to be depressed.

Two months before my legs had felt light “waltzing” around the hallowed isles of Coles. It had been eight months since I had been able to walk so far. I cleared sundry odd objects from off the kitchen island bench that in my previous life I had kept assiduously free of detritus. I excavated the knick knacks on my desk from under the layers of dust that had slowly enveloped them.

By the end of January, I was walking 8000 steps a day, and was rapidly catching up on my long-neglected housework. I got a haircut, started a challenging knitting project and reveled in relearning long forgotten piano pieces. What amazed me most was that after six months of lying on the lounge I was able to do so much, so fast! I would have thought that I would be so de-conditioned that it would take months to regain some semblance of endurance.

It appeared that the combination of Myfortic and IVIGs for my Immune Meditated Necrotising Myositis along with Bactrim and Voriconazole for my lung abscess had sent both illnesses scuttling into oblivion. Unfortunately, this was not to last…

At my rheumatology appointment in January I elatedly exclaimed that this was the first time he had ever seen me with a functional brain! Nine months of exhaustion and brain fog had reduced me to a fraction of who I really was, but I was now fully alive once more.  It was the day before my next IVIG infusion and my hip weakness was obvious. I eloquently made my case to fight for another 10 grams of IGs as I had gained almost 10 kg in weight.

He looked at me doubtfully and probably sighed inaudibly, but duly changed the dose on the Blood Star website and clicked the submit button. The next day at Cancer Care my dose was unchanged. I texted my rheumatologist, who probably sighed audibly this time. But he kindly rang the responsible government organisation and sold my case well. The next month I would receive 80 grams…which I hoped would decrease my days of weakness from six to three…or possibly even two. (It did!)

Everything was falling into place and the end of my almost year long saga was finally in sight. I texted my boss to say I thought I might be able to return to work in April.

The first hint of the recurrence of a state of uncertainty was at that same rheumatologist appointment. My routine bloods a few days before had shocked me with the sudden emergence of new neutropenia! Was it my Myfortic or my Bactrim. Both had given me my life back! Would I now have to stop one and risk heading back into the confining cage of ill health?

My rheumatologist hypothesized that it was probably my Bactrim and suggested reducing my dose to 1 tablet twice a day. I had already added in folic acid in the slight hope that would help my body produce more of the vital white cells needed to fight invaders from the outside. These cells had already been throttled back in an attempt to make them stop attacking the body that housed them.

Later that week I started to become weirdly unwell…intense fatigue and unrelenting nausea sent me back to the Emergency Department…the fear of sepsis due to my neutropenia uppermost in my mind. My bloods post IGs a few days before were reassuring…my neutrophils now back to normal. As an aside they commented that my LFTs were up a bit. It wasn’t until they handed me a copy of my results on discharge that I saw what “up a bit” meant…my GGT was 400!

That was unexpected….but what could be the cause? Could it also be blamed on Bactrim? It didn’t take much of a Google search to discover that Voriconazole was the most likely culprit. One by one my medications that had stopped my body from being destroyed were now themselves trying to destroy me.

Two weeks later my neutrophils were treading down once again. I had cut back my Voriconazole dose in an attempt to juggle a therapeutic drug level with minimally elevated LFTs which had stabilized my GGT in the high 200s.

Eventually my ID specialist suggested stopping the Bactrim to see what happened. Maybe seven weeks would be enough and after all, I had no definite diagnosis of Nocardia. I had now had two weeks with no productive cough or chest pain. If I got sick again, I would need some more investigations.

Within a week my systemic symptoms returned. Tachycardia on exertion quickly followed by light-headedness, productive cough and pleuritic chest pain. The preliminary results of a bronchoscopy a month later showed no evidence of fungi or bacteria but becoming ever more unwell I once again returned to hospital.

Despite a Voriconazole level of only 2.2 my LFTs had worsened once again. I was admitted, and my Voriconazole was ceased. I was now on no antibiotics or antifungals. Over the next 48 hours I rapidly deteriorated…now unable to take short walks or even sit out of bed.

I had four urgent medical reviews for tachycardia and central chest pain over the next 48 hours. Not surprisingly I refused to be discharged home on no medications to await an outpatient appointment with a cardio-thoracic surgeon. The next plan was for an expert opinion on possible surgical management of my lung lesion/abscess.

Over the weekend It was suggested that I see a psychiatrist as I looked very anxious. I said I was only anxious because despite getting sicker every day, nobody believed I was actually sick! They just kept telling me that I looked well, I had no fevers and my blood tests were all normal. Too late I thought of the retort that maybe I would have more luck convincing a psychiatrist that I was septic!

After a week of becoming ever more unwell in my local hospital the Infectious Diseases physician told me I was too complicated for them and suggested I be transferred to a Brisbane hospital where my very experienced private Infectious Diseases physician could try to delineate the underlying cause of my symptoms.

Over the next two weeks I had multiple medical opinions and even more investigations but unfortunately very few actual answers. The respiratory physician said he had never seen a septic patient like me before and suggested I see a “fringe” General Practitioner who specialized in treating dysautonomia. He was unable to explain why I was completely well for seven weeks on Bactrim…my resting heart rate rapidly dropping from the high 80s to the low 70s.

My cardiologist kept me sane and visited me daily for moral support. She was better than a psychiatrist because she believed I was sick…despite my naturally cheerful personality. She agreed it was unlikely that I had dysautonomic symptoms due to any cause other than infection.

My Infectious Diseases physician was sympathetic and believed I was unwell but was probably frustrated by his inability to track down an exact bacterial cause. Multiple blood cultures, a repeat bronchoscopy and ultrasound guided biopsy, a PET scan, a Brain MRI…all unexciting. The only choice left was to go back to treating me empirically and see what happened.  After all, probable Aspergillus had been seen on my original lung biopsy.

I had now spent almost three weeks being so unwell that I couldn’t get out of bed. Forty-eight hours after starting my new antifungal, Posaconazole, I stood up, walked across the room, and realized I had much less dizziness or tachycardia. I was ecstatic…though also realistic. This was probably how I felt after stopping Bactrim. Yes…I could now sit in a chair…but I was still far from well.

Over the next few days my symptoms waxed and waned. I would have an hour or two of feeling better, even able to sit in a chair and read a book. Then I would feel cold and shivery, and exhaustion would drive me back to bed.

On the morning of my planned departure, I was obviously unwell when visited by my Infectious Diseases physician. He asked if I wanted to stay in hospital longer, but in reality, there was no point. With no more tests to be done all I could do was wait. I would go home and spend the next month lying on the lounge, feeling like a Victorian maiden dying slowly of consumption.

Once home my view of verdant trees and hills, azure sky and cotton ball clouds was unobstructed through the large window where I languidly lounged. Despite that I was still confined to a cage…because my cage was actually my body and not merely my room. I continued to dream of freedom.

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn bright lawn
and he names the sky his own
But a caged bird stands on the grave of dreams…

~Caged Bird- Maya Angelou~