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| My heart-rate on a good day |
I was working in a dental surgery when I was 17, and I suddenly just didn't feel right. The palpitations had been going on far too long, and they felt far too strong. I called the doctors and they told me to come immediately. Not assuming it was anything serious, I got one of my work colleagues to drive me there, where I was told my heart rate was 230bpm and an ambulance was required immediately. 2 months later, I had my first heart surgery.
Fast forward 3 years. I'd had the same operation again and it had failed - again. I was then told that I had a new condition: Postural Orthostatic Tachycardia Syndrome. One that doctors knew very little about. One that left me feeling completely isolated.
Here I am now, 7 years later, with a specialist in PoTS. Yes, it's taken 7 years. I've been booked in for my 3 day autonomic testing, whereby they put me up in a hotel with my carer and extensive testing is carried out throughout the 3 day period.
Here are the tests listed below:
"24-hour ambualtory blood pressure & heart rate monitor (with autonomic protocol)
You will wear a blood pressure cuff on your arm which is attached to a monitor that 12cm x 9cm x 3cm and not very heavy. The monitor can be worn on a belt round your waist or on a sling over your shoulder. This must be worn for a continuous period of 24 hours. Your blood pressure will be taken every 20 minutes during the day and hourly overnight. During this time you will be asked to perform a number of activities and to keep a diary of blood pressure recordings and symptoms.
It will take 30-45 minutes to fit the monitor.
Screening autonomic function test
Please do not eat and drink only water 4 hours before this test.
Your blood pressure and heart rate will be monitored when you lie down and while you change your posture. You will be asked to perform some breathing exercises and other such short activities. None of these are particularly difficult alhough you have to work hard at them. Sometimes blood samples are taken. If blood is taken, we may need to put a special needle in your arm during the test. This test takes approximately 1 1/2 hours - 2 hours.
Plasma catechlomaine levels
This is a special blood sample. A needle will be put into your arm when you are lying down or while you are upright. Blood samples are taken after at least 10 minutes of rest either lying down or when upright, or both.
Prolonged Tilt
Please do not eat and drink only water 4 hours before this test.
Your blood pressure and heart rate will be monitored while you lie down before and during about an hour at 60 degree head up tilt. A blood sample is usually taken near the beginning and near the end of the test. This test takes approximately 1 1/2 hours - 2 hours.
Liquid food challenge test with head-up tilt
Please do not eat and drink only water 4 hours before this test.
Your blood pressure and heart rate will be monitored while you lie down and while you change your posture before and after you consume a milky drink. Sometimes blood samples are taken. If blood is taken, we may need to put a special needle in your arm during the test. This test takes approximately 2 hours."
Initially, I was filled with joy. And if I'd written this post a few days ago, my excitement would have oozed from every word. I don't feel that anymore. I just feel fear. Fear that this will be the most exhausting 3 days. Fear that I'm going to pushed beyond my limits. Fear that the tests will come back inconclusive. Fear that nothing can be done to help me. Fear that I'll be stuck like this forever.
My appointment is March 12th, but I will be brave. I will be strong. I am so lucky to have my husband, my mum and my stepdad all by my side on the days I'm in hospital; I don't think I could do it on my own. 99% of me is filled with terror, but that leaves 1%. And that 1% is a feeling I've not had for a very long time: hope.
I will vlog the 3 days in the hope that it helps others like me. Since I was diagnosed, that's all I've ever wanted to do. I've done multiple charity events and raised over £2,000 for people in my position, and I will continue to raise awareness through blog posts and videos.
My birthday is on 10th March. My testing starts on 12th. This is the best birthday present I've received in a very long time.
Those tests sound extremely exhausting (and also, unpleasant to say the least)!! I hope they will help the doctors help you. I will be thinking of you in March. Hugs.
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