Having a heart condition, even from birth and knowing about it, can be absolutely terrifying. Knowing you have this thing inside of you, essentially a ticking time bomb, requires constant consideration as well as the need to battle with the mixture of ‘is this sensible’ and ‘you only live once’.
But generally you just follow the usual routine; wake up in the morning, pop a pill, make sure you wait an hour or so before you leave the house and get on with your day of working, shopping and socialising. Every now and then you go along to see the cardiologist and they shoo you to the ECG and Echo teams to do all the usual baseline checks as well as insisting that the nurse measures your height (just in case, y’know, despite it not changing in several years you have suddenly out of the blue for no reason at all grown an extra few inches).
Sometimes though they ask you to go along and do other things. They once asked me to be part of a trial of certain medication but I just couldn’t pull myself to bring my heart condition more into my life or increase the number of tests and checks I had to go through. For me I know the condition is there and it needs monitoring but I prefer to keep it as far away from my daily life as possible; I avoid obsessing over the details or telling everybody about it because my mental health deserves more than that and people I meet in everyday life don’t need that sort of doom and gloom.
Back in October, they asked me to go for an MRI. My cardiologist had decided to get closer to retirement and stop seeing people for standard check-ups and with that this new doctor waltzed in and wanted to get a more in-depth look at everything. She took some blood for some test, that I will no doubt hear about in March 12 months after the tube was submitted for looking at, and said the MRI team would be in touch.
Eventually they did get in touch and I was asked to be there at 9am on a Monday. Hello day off! Hello 5am wake up call to be on the bus at 6am to get there for 8am (any later and hello school traffic jams)! That meant I had to go for a blood test at my GP surgery, to check my kidneys were working properly (hooray despite drinking like 1/3 of the recommended amount of water a day my kidneys work perfectly), something in itself that I dread because tablets to lower blood pressure result in nurses just looking very unimpressed at my veins.
Once the blood test results were confirmed and collected I prepared myself for what my mind was calling “the big day”. Every time I thought about it the knot in my stomach grew, it was putting me off eating and giving me sleepless nights. What if they spotted something urgently wrong? What if I had a panic attack in the enclosed MRI tube? What if I did something wrong in the lead up? It quickly took over my life. A reminder as to why I try to keep a distance from all the medical stuff.
I had to avoid caffeine the day before. On the Sunday I worked my usual, 07:30 to 16:00, on barely any sleep but tea, coffee and hot chocolate were all off the menu. My days drinks consisted of some juice and a horrific amount of water. But worse than that not being able to have chocolate or wine was problematic because how else is a girl supposed to cope with huge amounts of internal and external stress if not by sitting down at the end of a shift with a few pieces of chocolate and a glass of wine?
But all that was really neither here nor there. Avoiding tea for one day was annoying but ultimately no really big hassle in my life. Arriving at the MRI reception I was petrified and trying desperately to hold it together but at least it was finally here and then I could move on with my life and enjoy the rest of the day. If I have ever had an MRI before it was when I was a lot younger and, even though I received an information booklet, still did not really know what to expect.
The suite was small and seen me having to strip (apart from pants and, as I demanded, socks) and get into a gown, which let me tell you took some time to tie up in a way that did not make my anxious self want to puke into the disabled toilet I was being forced to change next to whilst stuffing my bra into a locked cabinet. As if being in a closed space couldn’t be any worse, I had to do it nearly naked.
Then it came to the time of them discussing the contrast. For some reason I thought that it was just injected into me and that it would be there for when they needed it not that it would see them sticking a line into me. So this was blood test levels of anxiety and fear but ten times worse and the doctor carrying it out decided to go straight for the top of my wrist. He failed. Instead it went in around the bit of the wrist where that little bobbly bit of bone/joint sticks up. It hurt. A lot. Through the fear of it not working the first time, my hatred of needles and the pain it is safe to say I cried. The doctor seemed pretty disregarding of the whole thing even though I said it was the bit I was probably most scared of. In fact he barely spoke to me at all.
After this a lovely lady appeared and generally seemed to take over the process. She got the whole ‘saying the right things’ bit to calm a patient down and to actually explain the process. I like people like that because patient care is a hugely important thing for me and whilst I know they are completely underfunded, overworked and have deadlines to meet a smile when undergoing tests that could completely impact my life means a hell of a lot.
It probably took about ten minutes to get me in position with all the right wedges, wires and bits and bobs in place and ready to go. They popped some ear plugs into my ears and some headphones so I would be able to hear them speaking to me. I always knew MRI machines hummed and thought they more meant noisy as in a low tone repetitive drone but I quickly learned otherwise and was more than thankful to have something to muffle it a little. The fact that as you are laying nice and comfortable and then they move you into the tube and your arms need to come closer into your body is not good and when they ask you through the headphones if you are okay it is pretty hard to speak but you just about mumble a yes thanks. Bloody hell how British close to having a panic attack stuck inside a tiny and loud tube and still managing to say yes thanks.
The next hour of having my eyes closed, being asked to breath and hold in breath certain ways whilst also having the machine randomly move me an inch or two causing me to jolt and desperately try to grab onto something was possible one of the longest hours of my life. Just when I was about managing to get myself into a rhythm of breathing and knowing how many beeps to expect for different bits I was told that the contrast was about to come along, it might make my arm feel a little cold and that I would have to breath in a different way. Being under pressure to breath in and hold it really quickly did not help my mental state and staying calm throughout the rest of the test became an increasing challenge. There was a panic/emergency button you held and could press but I knew pressing it would only result in the lengthening of the process; something I was desperate to avoid as it meant more time in the tube for me, more time taken by the staff and more very-short-of NHS money being used to keep the machine whirring.
Eventually the news came back from the test that all the hidden parts of my aorta is stable and smaller than the more easily tracked places with the Echo at each general appointment with the cardiologist team. I had hoped that the MRI was going to return something other than a 4.4cm reading in the most dilated of places, putting it 0.1cm away from the consideration of surgery and where they increase observations on it, but that result from the Echo turned out to be accurate and I continue to be on the edge of a knife (a surgical one to be precise).
An MRI was not as terrifying in some places I imagined it would be but at other points did cause me to come very close to freaking out (not helped by my partner not being able to get to the hospital until after I had gone into the room and meet me until afterwards) but at least if, or rather when, they ask for another one to be done I will have an understanding as an adult of what to expect.
Have you ever had an MRI? What are your thoughts on the whole experience and do you have any tips for somebody as to how to make it a little less bad?