I’m not talking about a half-hearted
following the words but not the meaning
type of listening, that uses only one ear
And the occasional Oh, I see.
That type of listening you come across
every day of the week.

~The Art of Listening – Anne Tanna~

As he leaned back in his chair, my rheumatologist took a long look at me and said, “This is a nasty disease.” Just in case I hadn’t taken it in, he repeats it: “Really nasty.” Was he trying to encourage me that I wasn’t feeling fatigued and stressed because of my inability to cope…that this was something that was really difficult and that it wasn’t just me? Or was he trying to prepare me for the fact that any progress made would be slow and arduous, and not to expect too much too soon? Probably both!

My strength had plateaued quickly. My initial arm movement was followed by only random increases in ability to function that weren’t even predictable from hour to hour, let alone from day to day. I continued to waddle like a penguin, my locked knees holding my hips in place and keeping me upright. I had now been on two immunosuppressants for eight weeks. Was this going to be long enough to fulfil the stringent criteria needed to get IV immunoglobulins? At over $10,000 a month, this wasn’t a medication that the government would give out to just anyone.

I didn’t have to try to talk him into it, but he wasn’t sure if I would be approved. He pulled up the Blood Star website and started ticking the boxes for Immune-Mediated Necrotising Myositis. I had the required muscle weakness. Now, just to see if my trial of other immunosuppressants had been long enough. He said he should hear back quickly if I was approved. Before I got to the car, he sent me a text—approved already!

In the past I probably would have needed twelve weeks of treatment to get approval, but the evidence is slowly mounting up. The current trial in the Netherlands, nicknamed the “Time is Muscle Trial”, was using Immunoglobulins at diagnosis. The theory suggests that the earlier you receive them, the better the long-term outcome will be.

Starting now was far preferable to waiting another month. And this was perfect timing. After eight weeks of 50 mg of Prednisone, my rheumatologist wasn’t keen for me to keep on such a high dose for any longer. I was told to decrease it to 40 mg the following day, and over the next two months, cut it back to 20 mg. I will soon know how much of my slight movement is due to the prednisone!

I still woke up at 4 am the next morning, but with less anxious thoughts to disturb me, I went back to sleep after an hour or so and slept until 7 am. I still think my insomnia is atypical for prednisone. I go to sleep easily at 10 pm and only wake up when the prednisone is wearing off. This is when I woke up with the most pain before starting prednisone. I also started getting palpitations at this time, possibly due to the inflammatory process getting a kick-start during that time of the morning.

Three months before, I had been diagnosed with bilateral pulmonary emboli, most likely due to a myositis-induced local inflammatory response in my lungs. I had always had a small amount of right-sided chest pain, more noticeable on taking a deep breath. Now, as I decreased my dose of prednisone, this pain steadily worsened and eventually became constant. Was my pain muscular due to a flare of my myositis? Was I getting more emboli? Was it just a normal side effect to be expected when decreasing prednisone? These were questions that nobody could answer, though I did send an email to my respiratory physician to see if he had any ideas as to the cause of my pain.

Over the next few days, my pain continued to worsen, and I again sensibly, though reluctantly, returned to the emergency department. My repeat chest CT scan showed complete resolution of my emboli. Great! However, in the area of concern was now a small cavitation…which to me looked innocuous. I had no idea what this was, as the respiratory specialist definitely didn’t add to my fear by saying the word “abscess”.

I was discharged home on some “precautionary” antibiotics, just in case there was some associated infection. I was told I was “complicated” and to come back if I was “worried”. They definitely wouldn’t think I was “over-reacting”. It wasn’t until I got home and Googled “cavitating lung lesions post-PE” that I realised I now had a rare medical condition that could kill me. Sepsis while on immunosuppressants isn’t an ideal combination!

Two days later I was back in the emergency department.  I had a new productive cough. This time I was admitted for two days, but was only continued on the oral Amoxicillin that I had been taking at home. When I questioned this, the respiratory registar replied that Amoxicillin had good oral availability. “Seventy per-cent,” I retorted. I had Googled it! I was lying awake all night in the hospital having treatment that I could have had at home. I wasn’t impressed.

During that admission, I had my first infusion of immunoglobulins. Sitting in the Cancer Care Infusion Centre watching the clear liquid gold drip into my vein was almost a surreal experience…the holy grail of immune disease weaponry circulating through my body to seek and destroy…or at least confuse and confound. Twenty-four hours later, I stood up to walk across the room and realised that I could actually move my hips! I burst into tears and immediately texted my rheumatologist. After all my annoying texts over the previous two weeks because I was stressed about feeling unwell, he may as well hear my good news. It was my first real glimpse of hope that some degree of recovery was possible.

With no significant improvement in my chest pain or cough with antibiotics, I was told that I most likely had pleurisy due to inflammation rather than infection.  On discharge I was told that I was complicated and to come back if I was worried. Again, it was reiterated that I wouldn’t be overreacting.

This time I was home for a whole week!! But two days after finishing nine days of Amoxicillin I became much more unwell. My chest pain had never changed…present constantly and worse if I took a deep breath. Then I woke up one morning feeling dizzy and nauseous. My cough was worse and more productive. My brain felt like it was shutting down. Now I felt sick. I knew I wasn’t overreacting this time.

The Respiratory Registrar’s eyes glazed over as he heard me repeat my story for the third time. He didn’t look impressed. Ten days before he may have thought I was sick, possibly even septic. Now he was thinking I was probably just anxious, my awareness of a cavitating lung lesion while on two immunosuppressants causing me to hyper-focus on symptoms that meant nothing.

Overreacting is what I now read between the lines of what the respiratory registrar was saying. Maybe I’d like to go home? They probably wouldn’t give me any more antibiotics. My blood tests were all normal. It’s obviously just pleurisy and I would eventually get better. The consultant wouldn’t see me until the morning anyway. I lay back on the bed, sighed, and said I wasn’t going home. I was too sick. They could do whatever they liked. I no longer cared.

Late that afternoon the respiratory physician came to see me. I suspect he came in especially. He told me that I may be complicated, but at least all the respiratory physicians know me now! He was happy to put me on Augmentin Duo Forte with some extra lunchtime Amoxicillin. He would admit me and discuss me with my regular respiratory physician on Friday, and see what he thought.

By the time I got to the ward I was starving and near breaking down. Somehow, I had missed being given dinner. I had felt so sick I hadn’t noticed. I rummaged through the patient fridge and found some wholemeal bread and margarine to go with my snack of nuts and dark chocolate, but it was too little, too late. I was beginning to doubt myself. Was I actually sick? Should I even be here?

I changed into my pyjamas, brushed my teeth, and burst into tears. I had tried to keep my texts to my rheumatologist rational and clinical and to not let my frustrations and anxieties show through…at least too much. He puts up with more than enough from me already, going over and above what his job actually entails…but I was sorely tempted to be emotional…

But then a good nurse friend texted me…she is so sweet and sympathetic and cheers me up. She could read between the lines that I was frustrated and I told her I was being overly emotional about everything! She said she would come visit me in the morning:) I spent the next day sleeping and gazing out of the window, too tired to read or even to think. I ate little and was on the verge of crying all day, frustrated and depressed about the unknowns of my illness.

The next morning, while eating my breakfast, I had a sudden epiphany. I felt hungry…not only that…I felt well. I felt so much better that I realised I had actually been sick! My nurse laughed when I told her. “Of course you were sick…we all knew that!” They might have known…but I didn’t know! I still thought I might have been slowly (or quickly) going mad.

But I still had to wait for my regular respiratory physician to see me…what if he didn’t think I was sick? I would probably cry and threaten to not come back again until it was evident to everyone that I was really sick…or at least looked sick. But fortunately, he thought I was sick…or at least sick enough to treat with antibiotics for a month.

My rheumatologist also visited me and was pleased with my new muscle movement and strength. For the first time he voiced the hope that I may actually get back to work. As he tends to be very pragmatic and rational, for him to actually say this meant a great deal as he wouldn’t say it just to make me feel better. He would only have said it if he actually believed it to be true.

Most of my consultant doctors take me seriously and never fob me off. But their registrars look at me as if I’m just anxious and have no idea why I’m even here. All my blood tests are unremarkable —how could I have an infection? I’m not sure what I can learn from this, except that having more experience means you listen to what the patient is saying and don’t rely solely on their test results to diagnose. But the most important things for a patient are compassion and empathy, and the feeling that you are being heard and understood.

No, what I’m singing my hymn of praise to
Is a higher form of communication altogether.
I’m talking about employing all the tools at our disposal:
two ears, two eyes, the heart, the gut,
that place inside where compassion and empathy lie.

~The Art of Listening – Anne Tanna~