On the 18th of May, 2016, I met the Durham lung consultant for the first time:
Appointment with the Thoracic Consultant
First, let me thank you all for the support! I’m overwhelmed by your well wishes, in every form. It means a lot.
I really, really like my doctor. She was very thorough, and spent almost an hour with me. She started with my personal health history, and was particularly interested in my mold exposure at Amity. She also took a very careful history of the last year, and a family medical history with particular interest in any clotting disorders in the family. I told her EVERYTHING I knew, don’t worry, Aunts!! She also asked about exposure to TB, though my X-ray was clear. She did a thorough physical exam, and had me walk up and down the corridor with the nurse monitoring my blood oxygen saturation level.
The report for high resolution CT scan that I had in early April said that nothing was abnormal. However, she has requested the images, and she is bringing them to a colleague who specialises in respiratory radiology readings, and he will examine them this Friday. Furthermore, she will ask him if he recommends any other types of scans, and she thinks those will be done within the next month. She took TONS of bloods today– 9 vials, including a spiro test for aspergillis, the mold that was at [the sick school]. I will see her again in 6 weeks.
The clear CT report means that I do not have interstitial lung disease. The normal echocardiogram means that I do not have high blood pressure in the lungs (a separate system from the regular circulatory system). However, the February pulmonary test showed my transfer factor/diffusion capacity to be at 70% of normal, and we agree that my tests today (which didn’t include a diffusion test) were worse. So, we have to find what is blocking the cells in my alveoli. (Medic friends, feel free to chip in!)
If the further scans show nothing of use, then she’s going to hook me up to every monitor known to man, put me on an exercise bike, and see what happens.
😉
In the meantime, I’m going to be taking my peak flow ever morning and night for the next two weeks, and (joy!) collecting sputum samples… ICK. (Not the grossest thing I’ve ever had to do, though…)
She estimates it’s going to take 3-4 months to fully investigate what is up with me.
On Monday, I see my rheumatologist, so hopefully he’ll be able to help with all these other pesky symptoms! Please feel free to ask any questions!! Thanks so much for your support!!
So, none of this was as clear cut and simple as the doctor suggested. The scan wasn’t necessarily conclusive, the 3-4 month investigation wasn’t very realistic, and I’m not entirely sure they ever did the spiro properly, since my Oxford consultant couldn’t find the result and ended up repeating the test herself. I think this post exemplifies what a rollercoaster chronic illness can be, when doctors seem to be able to promise answers that they might not be able to deliver on. Each appointment is so full of hope and anticipation, and doctors who aren’t used to working with autoimmune or complex patients aren’t necessarily ready to prepare patients for the level of uncertainty involved. My Oxford-based consultant is very good at communicating this type of precarity, in a reassuring way. She always says, “We know there’s something going on, it’s not quite right, it’s probably autoimmune, and you’re not alone. There are a lot of patients like you who have some sort of autoimmune process happening with their lungs, but we can’t quite pin down what’s going on.” I think she should probably teach classes on this stuff.
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 