On Tuesday 21st May, we headed off to the Royal Brompton, for Roch’s outpatient appointment at the Sleep and Ventilation Unit, on Lind Ward. The usual tests were carried out. Blood was taken from the poor ear (it always takes so long for the bleeding to stop!) It has to be arterial blood, so they take from the wrist or ear. The test is in order to monitor the gases in the blood, so oxygen and carbon dioxide levels are checked. This visit oxygen levels were found to be normal. His fvc (forced vital capacity) is down since his last test at the end of January and reads now at 77%, and although this isn’t a bad reading, it does show an increase in the rate of decline.
We were delighted that the tests were carried out quickly,
really almost immediately after our arrival. Unfortunately we then sat and
watched as every other patient was called in before Roch. We were the very last
in Clinic. Even the receptionists had gone home by the time we were seen by the
doctor. It’s not something we would ever
make a fuss about – it’s just the luck of the draw. But somehow waiting around
for hours, doing nothing, turns out to be really tiring.
|Poor ear is assaulted again|
We didn’t have the privilege of seeing Professor Polkey this time but it hardly mattered. The doctor who spoke to us and gave us the test results was, again, someone who listened attentively and gave her undivided and unhurried attention to us both. As usual, we were impressed by the expertise and professionalism shown by the medical staff there. Next appointment in 6 months’ time. Meanwhile, use the nippy if he develops morning headaches, daytime somnolence or breathing difficulties when lying flat. He’s happy with this.There’s no doubt, his voice does get weaker and more tired at times and I wondered if it was because his breathing is being affected. She explained to us that of course, the larynx is a muscle too, so this will begin to weaken and may have begun to lose strength already. As for his breathing, it is slightly affected and so he does become a little short of breath on occasion – but there are no bulbar symptoms as yet. So that’s good news.
There was no sign of 'Nanny Biscuit'. (blog passim 16.06.11)