Finally, the long wait has ended and I saw a Respiratory Specialist!
My case was initially referred to the Logan Hospital almost 5 years ago, and it was very unlikely I would get to see the specialist there. Cut a long story short, my case was re-referred to the Gold Coast University Hospital (GCUH) Respiratory Clinic last year. From there, things went rather quickly. I was categorised to see a specialist within 3 months and the appointment day finally arrived.
I always get nervous about seeing a new doctor or a specialist. It is a learnt anxiety from how they treated me in the past. I also started feeling that the appointment could be pointless as I don’t have any recent or relevant information. I would just be dismissed with ridicule… Then, I thought again that I could at least have a closure to the 5 year waiting.
Respiratory Clinic is at the end of long Outpatient Clinic area. From their waiting room, I enjoyed the beautiful view overlooking the well maintained garden.
Soon after, an intelligent looking and polite medical student came to fetch me. Then, I was greeted by a friendly and energetic specialist.
During the initial discussion, I mentioned that my main problem is Myalgic Encephalomyelitis (ME). Then, I got shock-like surprise. Not only he pronounced the full name correctly, he didn’t correct me it is Chronic Fatigue Syndrome. At this point, he gained my total trust and respect. Although he excused that he doesn’t know much about it, I noticed he had relevant knowledge about ME in his specialised fields.
I also told him that I don’t have any pre-existing knowledge (about respiratory conditions), but I learn as I go.
He looked at the pulmonary function test result from 5 years ago, and expressed his doubt about my COPD and asthma diagnosis. He suggested to check on internet about Obstructive Pattern (COPD, asthma) and Restrictive Pattern (lung fibrosis, muscle weakness), then kindly wrote these terms down for me.
I have Restrictive Pattern. It seems like lung muscle weakness is the cause of my respiratory problem. Out of my long term curiosity, I questioned if my case is consistent with ME. He agreed with the possibility.
However, he doesn’t exclude any possibilities at this stage. He wants to run a few investigation tests before he come to the conclusion. He filled the test request form and there were lots of circles made on the test list. He’s going to send this request to the hospital and will see me on the day, so that I can get tests done and see him in one trip.
During the discussion, he asked several times if I had seen a ME Specialist. This question wouldn’t be asked at any other hospitals in Australia. I couldn’t stop smiling whenever he asked the question. (Both GCUH and NCNED are part of Griffith University.)
I haven’t seen the ME Specialist yet. But, I heard a good feed back about him and the clinic. I explained to the Respiratory Specialist that my current treating doctor has good knowledge of ME and gives me any currently possible management of the condition. So, I don’t feel the necessity to see the ME Specialist at the moment. (Although I keep the possibility open.) I mentioned that I am participating in there severe ME research.
He also asked if I’m interested in Sleep Study. I don’t think I have Sleep Apnoea, but it is worth investigating because of my terrible sleep pattern and severe sleep related fatigue.
He is aware of altered sleep brain wave in ME. So, he made it clear that the study is for investigation of Sleep Apnoea, not for ME.
I have wondered about the Sleep Study in the past. However, being isolated with a dog to look after, it wasn’t possible investigation for me. Now, I have a kind friend whom I can ask to take me to the sleep clinic at night, look after my dog over night, and come and pick me up in the following morning.
So, I agreed to try the Sleep Study. (It was so uplifting to be able to say so.)
The Respiratory Specialist made sure that I asked all the questions, told him everything I need, and he answered all my questions.
The follow up appointment was made. I will come back to the same place, then everything will be organised for me.
GCUH has a specialist with ME knowledge. (!) I assume this has something to do with NCNED. Having my major health condition recognised and considered during the specialist consultation made me feel that I’m safe under their care.
From now on, GCUH is my hospital. I asked my friend if someone try to send me to the other hospital, please stop them. He laughed and promised.
List of Relevant Websites
Restrictive Lung Disease | Medscape
Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review | The National Center for Biotechnology Information
First Gold Coast sleep laboratory opens | Natasha McNamara