Specialist Tests

Sunday evening yet again. How did that happen?!

I hope you’ve all had a brilliant weekend and managed to do something you enjoy 🙂 this next post is all about tests: lovely medical tests.

After being referred by my GP at the time, I was due to have some not so pleasant sounding tests at a specialist hospital in London. I’d been under a consultant there for a while who concluded that yepppppp I needed some more prodding and poking. This was around 4 years ago now I think. The hospital actually booked a hotel room for me and my mum as we’d have to stay overnight. AND a patient transport ‘ambulance’ picked us up from home and took us all the way to the hospital. I know that some people have had awful experiences with the NHS but this was the total opposite. I was so thankful. Anyway! The first day I had a 24hr blood pressure monitor fitted. Once that was all explained, we were allowed to go back to the hotel room till the morning.

The next morning I remember demolishing as much food as I could from the buffet. I wasn’t allowed to eat for about 4 hours before the upcoming test so I munched on fruit, cooked brekkie bits, yoghurt, juices + coffee. Well it would have been rude not to. Now the big scary test was coming up; another tilt table. But this time, I would be exposed to ‘stressors’ beforehand. I was strapped onto the hospital bed (to make sure I didn’t faint whilst tilted upwards, although I’ve never fainted in my entire life) and had a cannula fitted to take blood throughout. Yucky yucky. Before being tilted, I had my hand placed between two ice packs to see how my heart rate, blood pressure etc reacted. I then had to count down from a given number in increments of another number. It’s all a bit hazy really but they are the stressors I can think of right now. I was then tilted upright and, as with my previous one, it was stopped prematurely as I was clearly symptomatic and they had the results they needed. The whole thing was over in an hour and a half; a lot quicker than we were expecting. The POTS diagnosis held up and they were sure that my heart itself was totally fine. Relief!

As soon as I could, I grabbed a packet of crisps as I hadn’t eaten for almost 5 hours or something ridiculous. I then had a brief chat with a consultant who went through the findings with us, discussing the next steps etc. Then patient transport was organised for the journey home; totally on the spot. Again I was so unbelievably grateful for the NHS and the hospital staff for making it all so easy and as stress-free as possible.

I appreciate that this probably wasn’t as detailed as it could have been, but my memory seems to have blurred it all into a big mess of wires and hospital gowns. I do have the paperwork somewhere that gives the specific readings from my tilt table ordeal, although it’s likely to be crammed at the bottom of a drawer that’s full of all my medical stuff *gulp*

Stay safe

Kelsey x

A New Diagnosis (continued)

Let’s jump straight back into it, shall we? No time like the present and all that jazz.

So, as I said in the previous blog post, I was referred to a cardiologist at a local hospital to test for POTS. The only real way to officially diagnose POTS is via something called a Tilt-Table Test. Essentially, you are strapped onto the bed/table, which is slowly tilted upwards (around 60-70 degrees) to mimic standing. The straps are in place as a safety measure in case a patient faints. A footboard is also present so you’re not just dangling! Heart rate and blood pressure readings are taken throughout. The upright position can last anywhere from 10 to 45 minutes, depending on your readings, symptoms etc. The test will end when adequate results have been obtained, the patient has fainted or the maximum time has elapsed.

To be given a diagnosis of POTS, a person has to have:

  • A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing
  • Those aged 12-19 years require an increase of at least 40 beats per minute
  • These criteria may not apply to those with a low heart rate when resting
  • There is usually no drop in blood pressure on standing

I wasn’t particularly nervous about my upcoming test as I just genuinely wanted some answers; did I have POTS? Was my M.E diagnosis wrong? I can’t recall exact details (my test was in May 2012), but I definitely remember how utterly strange it felt. I became symptomatic almost straightaway after being tilted, which wasn’t really a surprise. My feet, legs, hands and arms all started to go numb and the little energy I had was simply draining away. After only a short time, I’d say about 20 minutes or so, the cardiologist stopped the test as he had seen enough and it was evident that my symptoms were causing me some real trouble. Once I’d had a rest, gotten changed out of my hospital gown and my mum had entered the room, he told us both that I did indeed have POTS. There was no doubt about it. He couldn’t tell me whether I had M.E alongside it as the symptoms overlap so much. But to have a diagnosis of something that can be properly tested for was a real relief; as if I now had something concrete and medically proven. Overall it obviously wasn’t an enjoyable or pleasant experience; when are hospital tests ever either of those things? But to have something 100% proven, something that couldn’t be dismissed as fake, was a wonderful result. I know not everyone is this lucky and it upsets me greatly, but this is just my own story and experience; many struggle to be heard and are refused tests that can easily be carried out, even though there is strong evidence of another condition at play. On this occasion, I was unbelievably thankful for my lovely GP, cardiologist and NHS.

Have a great weekend!

Kelsey x