What is amazingly now a whole 2 months ago, I spoke here about my discovery of PoTS, my first trip to the doctors and my referral to cardiology at the local hospital. A few days ago I had that appointment, and more for my own sake I want to document what happened.
Having read lots of blogs about issues with being diagnosed and doctors not taking people seriously, I wrote a list of all the “abnormal” things my body does, whether they’re related to possible PoTS or not. With my friends help in adding things I’d forgotten about (often things that for me happen so often I consider them normal), I ended up with a list over 2 pages long to show my consultant, or just to use as a prompt if I needed (which considering how much there was, seemed a good idea!).
After ringing up a few times to bother them about my appointment confirmation, I was finally told to expect the appointment to last about 2 hours, and to be prepared to have scans before I saw the a doctor, both of which were pretty accurate.
As soon as I arrived, I had my weight and seated blood pressure taken by a nurse, then an ECG taken by cardiology specialist nurse. The doctor then asked me to explain my symptoms, as well as a medical history and any medications I’m on. I explained how I always feel dizzy, especially when standing up, and that I sometimes faint. He asked a few questions about other symptoms, such as palpitations and shortness of breath, but overall he didn’t ask as much as I expected.
I then had an active stand test, where they took my heart rate and blood pressure whilst lying, standing, and then standing over a period of time, which showed as positive for PoTS.
So what are my next steps? I’ve been referred for an echocardiagram, to check for structural abnormalities in my heart, a tilt table test (which is in the most awkward hospital to get to ever), and a 24 hour ECG to measure my HR over a day.
I’ve also been advised to increase fluid and salt intake, which I’ve already been doing, and to keep a food and symptom diary for a few weeks to see if we can see any patterns. After all that, I’ll go back to see the doctor again, to get an official diagnosis, and hopefully a prognosis and some support.
I have to say, I read so much negativity about the NHS, but I can’t fault them so far. Everyone I saw today was polite and took time to speak to me, and I was never waiting longer than 10 minutes to see each person. Fingers crossed it continues.