How the exercise stress test went

About a week ago I posted asking for some help on how to word my boundaries for an exercise stress test. This is an update on how it all went. It's long, sorry. Hope the headings and TL;DR help.

TL;DR

The hospital system is very broken, the staff were very nice, very respectful, and very very concerned that I had even been referred to do this test in the first place.

Getting to the clinic

My local hospital has massive construction going on, so while ordinarily I know my way around very well, it’s a situation where known shortcuts are completely blocked off now.

I had spoken to the clinical measurements team on the phone in the days before and they suggested I get the hospital “shuttle bus” (it’s an 8 seat golf cart) to the clinic. I forgot to ask them if there’s seating at the stops so I later called the general hospital switchboard and asked them. The person on the phone said “ummmmm” and then a very quick “yes” and hung up on me which did not fill me with confidence so I decided to talk my walker with me. (I find my walker mostly a hindrance & rarely use it but I can’t stand for long at all so I took it for the seat aspect alone.)

The hospital website said the shuttle bus went between 4 points of the hospital in a 20min loop, so I drove there early to ensure there was time to wait for the bus to do a loop.

The shuttle bus kinda just appeared right as we locked the car so I flagged them down & they let us hop on. Thankfully there was a spot at the back where the folded walker could go so my partner lifted it on there for me.

They drove us to the main entry of the hospital and kind of looked weirdly at us. They expected us to get off. I said “um the website says you go near the clinical measurements building”. They kind of grumbled and then agreed they did so they drove us around to the nearest drop off point.

Gave us no indication of how to get them back there when I was done, so I assumed they basically wouldn’t.

Anyway despite the website info not matching the reality of the shuttle bus it did cut a lot of walking which was good.

I was pretty early for the test but had been told it was ok to come early and rest / cool off. I’m very heat intolerant, it’s summer, and a 1pm appointment is my idea of hell. (I did try to change the appointment to a morning one but they just don’t do exercise stress tests in the mornings, 1pm is the first appointment of the day.)

I had my little portable fan with me (Kmart clip on pram fan if you’re curious) and was half an hour early so I had heaps of time to cool off. My preferred N95 is also a valved kind due to heat so that also helps when cooling off. (I mask around anyone who isn’t my partner.)

The test

The technician came in, introduced herself, and started talking through how a standard test goes. I kind of stopped her there (not rudely, but to save her explaining too much) and said “I can walk for about two minutes on a flat surface.” I can actually walk for more than that but I dunno, two mins is what came out of my mouth. Medical stress I guess, I just blurted something.

I said I have MECFS and I experience PEM so there’s no way I’m letting my heart rate go to "220 minus age".

I think that was when she then looked over my file in more detail and started to ask why I was there. Good question, hey? The tech got really concerned, very quickly. She left to call the head doctor for the clinical measurements department.

While she was out the room I noticed not only did they have the giant air purifier in the room, but it was on full! Yay! Win for an element of airborne safety in hospitals. Usually when I’ve seen the air purifiers in my local hospital they’re off (head desk).

When the tech came back she said she had gotten through to the registrar (specialist in training) and they said it was completely up to me if I did the test at all, given all my conditions.

As we were talking the phone rang again and the tech left to take the call. That call was the head doctor calling back. Presumably the registrar had gone to tell the head doctor the details and they had extreme concerns as well which is why they phoned back so quickly. Again, they said doing the test was 100% up to me - that seemed to be their way of saying “don’t do it, this is wrong, you shouldn’t be here” without actually saying “that cardiologist was wildly wrong to send you here”.

I didn’t have to explain MECFS or PEM to anyone. I don’t know if they understood it, believed me, were concerned about asthma & MCAS (which would also be on my hospital records) or what. I didn’t expect anyone to know what MECFS was let alone take it seriously. I guess they did understand it? I’m not used to this experience at all!

It’s confusing to not have to explain yourself. That’s not how medical appointments for us go, you know?

I said I know how long I can walk slowly for so I was happy to be strapped up and they can take the data they can get from that. I said that’s what I had told the cardiologist I would do and he had said any data is useful. That “any data is useful” was appearing to be a lie at this stage but the staff were too professional to say it as bluntly as I was saying it.

The technician started plugging me in while the doctor supervising the tests for the day (I’m pretty sure this was a different doctor than who was on either of the phone calls) came in and read me the consent forms & talked about the test again. She very strongly emphasised that other tests exist, I could stop at any time, and I could withdraw consent at any time. The way she was emphasising this made me think she wanted me to refuse to do the test. That's three doctors who didn't think I should have been asked to do this test.

Eventually I was rigged up (leads all over my chest, a BP cuff on my arm). They rigged me up while I was shirtless but wearing my shorts and a bra, and said I was welcome to put my shirt back on when rigged up. That looked too complicated for my brain to work out, so I just stayed in my bra. I think other places give you a gown top so if that kind of thing is a concern for you and you’re doing one of these, please ask as you deserve to feel safety in how clothed/unclothed you are.

I got on the treadmill and stood still while they took an initial BP reading (on an old manual machine haha, they kept forgetting how to use it). When they started the treadmill I had an initial reaction of WHOA because the minimum speed was twice as fast as I walk. My brain immediately cut the time I was willing to do this in half, given it was twice as fast.

I was on there just over three minutes in the end I think, and my HR only got up to about 115-120, which is actually good for me. Walking can spike me to 130 on a bad day so I was happy to be below that.

I asked them to stop the test when the treadmill went up to its first incline, which I think on the “modified protocol” the machine did for me was 5 degrees. Just no way I was going to walk on any slope. My legs can’t take that. I can do flat surfaces only. It’s not an immediate stop like a gym treadmill, it’s a little slower, but I’d say it was stopped within 30 seconds.

They let me recover, offered me a drink (I declined as I don’t unmask indoors, and I had a giant water bottle in my car). They took 4 or 5 blood pressure readings over the course of the test. I assume nothing was found as they unstrapped me from the monitors quickly and let me leave equally quickly, which I doubt they would do if abnormal patterns were showing.

Leaving

There didn’t seem to be a way to get the shuttle bus back to this corner of the hospital so we walked very slowly to the main entry. I sat on my walker and waited for the golf cart to show up. It did, and it took us back to the car park. I don’t know where the drop off was supposed to be so I just asked them to stop when we were near my car and they did. They sounded surprised but … I was in the disabled parking section, taking a golf cart, with a mobility aid in use. I dunno, didn’t seem shock worthy, you know? I've had issues at my local hospital before not being believed because "young" (I'm 40), so I think this is just part of it. The staff only associate elderly with disabled.

Recovery

I had taken the day off work for the test (I’m moderate but work, it’s fully remote, I don’t fit into any category very well but I just kind of go moderate as a generic average when people ask). I took the next day off too, just to give myself a mental break. I’m milder cognitively than physically and my job is unchallenging, but I just didn’t feel it was safe to push my body in any form of exertion. Freedom to relax was a higher priority than work.

I definitely had some wobbly days with higher symptoms but not sure I’d call it proper PEM. I think I would have had a smother recovery if I hadn’t had the stresses around it - eg leading up to it I felt I had to plan my “defence” and the hassles with the accessibility info being incorrect etc.

Why

So why did I do this? Just over a year ago I had a bunch of ambulance trips to the emergency department for abnormally high heart rates that wouldn’t come down. While the general consensus since then seems to be dysautonomia, I still did feel like I needed a full checkup from a cardiology point of view, to rule out a “traditional” heart problem.

It probably is dysautonomia, in fact the cardiologist who ordered this test said it’s IST. I don’t believe I meet the criteria for that as my resting heart rate isn’t high enough. But that’s an argument for my review appointment.

I’m also not comfortable doing a chemical stress test due to other medication reactions I’ve had in the past, so knowing that 1 or 2 times a month I do walk slowly somewhere and don’t crash from it - it just felt like I had more control over the entire thing by doing a physical test.

I won’t know until the review appointment if they did get data and what the next steps are. I assume they got no useful data.

Hope that helps anyone else with what this was like. If you have any questions, I'm happy to answer.