You've got to laugh!

This isn't a rant post so much as I genuinely find it hilarious. It's been a car wreck lately. (I'd be more annoyed if this had a negative impact on me, I need to state that at the first cardiologist apt i was immediately put on betablockers for my heart rate which helped the HR/fainting symptoms immensly, still a problem but much more controllable by me)

My comedy of errors.

Minor timeline.(UK, NHS) All dates are completely inaccurate except for the gap between them.

Long-long term M.E diagnosis. 3 years or so ago I realised I may have POTS as well via a friend.

**Jan 2017**: Started diagnosis route for that, Lots of back and forth for over a year until i got my doc to refer me to cardiology. Finally referred after I passed out a couple of times while finishing exercise at pools for example.

I showed data to doc. HR is 90 at rest, HR goes to 125-135 while standing. Continues to climb while standing until 160+, I pass out when it passes 180bpm.

**December 2017**: Got my referral.

**May 2018**(ish): Showed data to cardiologist six months later. Repeated same info, pass out at 180bpm etc. Referred for tilt table test.

Due to my hosp merging with another, some info was lost. No contact for several months, then another cardiology apt to checkhow how im doing.

**November 2019**(ish): Cardiologist I meet this time didn't even realise i'd been seen before, first cardio apparently kept shit notes.Explained it all again, HR goes v high, 165+, if it gets to 180+ I pass out. Still not had my tilt table test due to admin problems.

**December 2019**: Tilt table test apt finally arrives! March 2020 here we come!

**March 2020**: Covid19. All apts canceled. Cue wookie roaring impression.

**August 20 2020**:

Get a letter saying my apt has been fast tracked now theyre slowly doing tests again (only 2 a day. :O )

My appoint ment is in 9 days. I have to stop my betablockers (3.75mg 2x a day) completely 5 days before apt. O fuck. Okay, phone doctor, get a prescription of 1.25mgs so i can spend the next 4! days reducing my dosage so i dont have a fking heart attack. (Ever missed a dose of a betablocker like that? oh dear god its unpleasant.

5 days before apt, stop my prescription entirely. Cue I got about 10 hours sleep in 5 days.

Did you know its quite hard to sleep when your resting heart rate while led down is 115?

**August 29** **2020:** T- day. Finally I can get this out of the way and get POTS added to the diagnosis.

I 'wake up' (lol sleep) at 6am, leave home at 6:40 am, arrive there at 7:45 am, apt is at 8am.

I meet my nurses who are doing the test, two very nice ladies, one's only just started so is getting walked through the procedure atm. They explain to me how the test goes (Eesh the strapping up is weird, right arm crossed over chest towards left shoulder, strapped into loads of stuff) Lead nurse explains they might not even get a result, don't worry if they don't etc. I laugh and say you're completely going to get a result, no problem at all. She laughs but doubts (Yknow how often they hear patients say silly stuff) Heart rate will get to around 180 and my BP will start tanking.

I get hooked up to the machine, Note test has not begun im just sat on the bed being hooked up.

Resting heart rate 135. Machine beeps its little alarms.

"Hmm"

Told you!

Nurse looks a little concerned but oh well. Explains how test goes, i get led down for 15m on bed without moving (While strapped to bed) to get baseline heart rate.

Baseline heart rate is 130. While led down. At rest.... (Note, when on the betablockers its 90 at highest, goes down to high 60s now if im sleepy! if thats not good drugs i dont know what is)

Nurse says okay lets begin.

Tilt me up to the angle they use, slightly off vertical.

Cue 10 minutes of gradually more concerned questions from nurses.

"Are you feeling okay?" No. "Do you want us to stop?" Nah im good. "You sure youre good to continue?" Yup.

"You SURE you dont want us to stop?" Well...yeah...?

"12 minutes in I'm aborting the test, make a note" er what? "Your heart rate is too high, we don't have a doctor here and I can't leave your HR above 160" ..But I don't start passing out till it passes 180? "I'm sorry I can't continue the test with it causing your HR to be this high without a doctor present, its too dangerous" .

..

...

Wat.

​

So, three years from badgering my doctor to finally getting my tilt table, and it got aborted and given a non conclusive result because no one told the hospitals tilt table people that my HR went through the roof.

The nurses were so apologetic and i kept saying I wasn't mad at all as its legit not their fault in the slightest.

You gotta laugh don't you. :D

[https://i.imgur.com/5FMCCVF.jpg](https://i.imgur.com/5FMCCVF.jpg) My graph if you're interested, HUT marks "Head Up Tilt" (start of me being raised) "Tilted Back" is when she aborted the test and put me back to horizontal.

Note: I used a fitbit charge 3 to aid in my initial referral, however every medical professional I came across was very stubborn about how inaccurate they are. And then every single one when I compared my data to theirs such as when hooked up to a monitor, or comparing my 24 hour results to theirs etc, was shocked at how accurate it was. It's not precise enough to be medically diagnostic, but it was highly indicative at all stages. (Always within 2-5bpm of their results) It also helps me a lot in preempting symptoms. Personally I hate wearing a watch but I couldnt be without it now to be honest.

tl;dr it would be nice if departments communicated better.