I had a CT scan and I had, you know, ECG. And, I think that, yes - now that’s quite an interesting question. I got a mysterious phone call once about some guy who claimed he was part of the study and he wanted to, wanted to know if I was interested in doing an MRI. And so, I was away, I’d been away for a week. When I got back I called him. And I got his answering phone and I explained, “Yes, I’m Phillip, I’m whoever I am, and I would just love to do this.”
And he said, and he never called back. And I called him several times. And one time I got his wife, who took my name and address and said that he’d get her to call, him to call back. But he never did. And so then I contacted [study name], which isn’t all that easy because, you know, it’s a study, it’s a research study. There aren’t really people. There’s no pointer. It’s run by a professor, and I’m not going to call him because I don’t think he’d like to have one of his numbers in his statistics calling him up on the phone [laughs]. And, and nothing, I never found out about that. So that didn’t happen. And it was a bit, a bit unsettling because I really would like to be involved. You know, I would like to participate, partly for my own curiosity and answers, and partly because I don’t know how many people they have who are completely time-free and can go and do anything they like. You know, if they want me to come and stay with them for a couple of weeks, that’s fine, whatever. But that’s not the way the study works and that’s not their study protocol. And I think they’re probably right, because you can’t afford to have a loose cannon in a study protocol, because it makes the whole study look a bit, it could so easily get skewed by a few individuals.
What about the research nurses who work on the project? Do you feel able to contact them?
No, I’ve never contacted any of the nurses except to go there and have a check-up. They’re very friendly and they’re very helpful. And whenever I mention these things they’ll say that, “I’ll refer them to the researcher.” I’m a bit puzzled by the way the research does because each time I go it seems to be a different researcher. I guess what happens is that there’s a half a dozen researchers and they only have a couple of hours a day, a couple of hours a week when they’re actually in clinic. And so when you go you just meet a different researcher. But, no, I’m not, I just, I think I’m talking to the wrong people. I don’t really think it’s a part of the clinic to involve, it’s a part of the study to involve in any kind of intervention activity. I mean, you know, initially it was a non-intervention study. For the first three years they were just following people. And then they realised that this business of having a drug regimen, which is its own scary, scary thing, that this drug regimen really produced a fantastic improvement in the statistics. So that what they did was, they decided that it was not correct to be doing this with blind control studies. And so now everybody who joins [study name] is immediately put on the drug regimen. There’s an automatic drug regimen and everybody is put on it because this is sort of the one that works best. And it’s not tailored for the individual. And that’s probably right. We all have the same disease.
And - oh, as part of one of the studies of [study name] is you get to wear a pulse monitor for 24 hours, which takes your pulse constantly. It produces a constant plot. And so at the end of the study they take the memory card, the SD card away and they have a full record of your heart, of your pulse for the last 24 hours. And what they discovered on this that at 4 o’clock in the morning, plus or minus, there were fourteen heartbeats that were at twice the frequency and, which they claimed was an atrial fibrillation, an AF. And they wanted to put me on an additional drug regimen because of this atrial fibrillation. And I looked at the printout very carefully, and it seemed to me that the clock in the monitor must have quit, because it was exactly the same trace, it had just gone to half, twice the speed. And I would have thought if you had an AF you’d expect a different-shaped trace. And I talked to them about this. And, you know, I’m not sure that the technician you’re talking to really wants to know what my opinion is [laughs]. And so anyhow, so they wanted to put me on this drug regimen, and I sort of protested about this because I felt that this was almost certainly a glitch in the instrumentation, and I wanted to do it again. And finally what happened was I ended up going and seeing one of the senior doctors in the operation and he said that, well, whether it was an AF or not, he felt the whole thing was irrelevant to the discussion, “Fourteen at 4 am, no worries.” And so I’m not taking this additional lethal piece of chemistry.