Friday 16 November 2018

Just when you think things couldn't get any worse.....

They bloody well do!

Well we’re do I start? What a whirlwind the last few days have been! You may have noticed I’ve been a little quiet on social media for a couple of days. On Tuesday I had to travel up to Birmingham for a training course, not too taxing in itself but the journey home on a very overcrowded train was very taxing! I felt shattered by the evening, definitely not a myasthenia friendly experience!

Not to worry as I now work from home every Wednesday, so chance for a lie in and no commute to worry about, which would give me a chance to recuperate.

No such luck as it turns out!

At about 10.45 on Wednesday morning I suddenly got a crushing pain in my right shoulder, spreading to my chest and arm and I was struggling to breathe.

Having only renewed my First Aid at Work Certificate last month on the excellent course run via the TRF, I went through the heart attack check list: but no, pain on the wrong side for a heart attack, not feeling clammy or sweating. So what was it? My obvious thought was “is this what a myasthenic crisis feels like?” That's when you lose the ability to breathe for yourself.

Pain had hit about 15 out of 10 by this point, based on 0 being no pain and 10 being the worst pain you have ever experienced; yes far worse than anything I’ve ever experienced (and believe me I have found some very inventive ways of causing myself pain over the years) so I grab the phone and dial 999

In short order an Ambulance crew arrived and after checks, ECG etc I was blue lighted into Milton Keynes Hospital.

And then the saga started, several hours of trying to get the pain under control saw me going through oral paracetamol, codeine, IV paracetamol, Oramorph and finally IV Morphine before we got it to a just about bearable level around a five!

To be honest they seemed to be clutching at straws and dismissed it being myasthenia. Although saw no need to check with my Neurologist at Oxford. At one point suggesting it could be a musculoskeletal issue (which I could assure them it was not), eventually deciding after chest X-ray and a CT scan, it was possibly a blood clot and mild chest infection, so after prescribing Dalteparin injections to thin the blood and getting very confused over what antibiotics I could have, (many are counterindicted for myasthenia and I'm allergic to penicillin for good measure) they eventually were ready to discharge me at 6.30 in the evening.

We queried whether they were going to do an ECG as they kept mentioning it throughout the day but not actually doing one despite this being a standard protocol for a patient presenting with chest pain.

So eventually I get the ECG and clearly something is not right. So they want to compare it with the one done by the Ambulance crew in the morning but of course by now it cannot be found!

So they decided on another blood test.

The upshot was at 11.00 that night I was eventually told  that I’d had a “mild” heart attack!!!

So I was admitted and eventually in a bed by 01.30.

Thursday morning I awoke again in considerable pain and after some more IV Paracetamol I was told I’d be having an Angiogram and a short while later then  told it would take place at the JR Hospital at Oxford. They’re our Centre of Excellence for Cardiac Care (as well as myasthenia coincidently) 15 minutes later an ambulance crew arrives and at 09.00  I’m being driven to Oxford on blues and twos with a flying stop at the end of our road to pick up Grainne on the way. (Nice one guys!).

By 11.00 I’m in for the Angiogram, they discover a partial occlusion of the right cardiac artery, have performed an Angioplasty and inserted a stent.

By 2.00 I’m completely pain free, I can’t believe the difference.

Unfortunately we then had a nine hour wait for patient transport back to MK, no blue lights this time. Luckily this allowed me to get some much needed sleep in the afternoon.

We were eventually picked up shortly after 11.00 pm the crew (who had only just come on duty so not their fault) and were on the way back, getting back to the Cardiology Ward at MK, at around half past midnight for more obs, another ECG (I’d had about 10 that day by now) and eventually turning in around 02.00

So was the heart attack linked to my Myasthenia? Is it due to meds or was it a complete coincidence due to a known family history of heart problems? To be honest I’m fairly certain it’s the latter.

Today I have seen a consultant cardiologist had more tests, had an echocardiogram that showed minimal heart damage (some good news at last) but an ECG that was still elevated so unfortunately I'm still incarcerated on the Cardiology Ward! More blood tests in the morning and maybe I can go home later tomorrow?

Never rains but it pours eh?

And can I make it quite clear, neither contracting Myasthenia Gravis or having a heart attack were on my Sixty by Sixty list!


  1. Yikes Tony, that's all scary shit. Glad you've stabilised and out of pain. To better times....

  2. We have been thinking of you since we got the news. What a horrible and frightening experience for you all. Get strong xxx

  3. You don't do things by halves do you! Scary times but pleased you're okay. Hope you get home soon xxx