The SCAD letter and my job - update!

 

2^nd September 2025.

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AND ON WITH MY TALE…

 

Yesterday I got a report of my phone call with Professor Adlam at Glenfield Hospital, the UK expert on SCADS.

The first few lines described what had happened to me in ‘medic speak’. You know the sort of thing: “A ST-elevated T Myocardial Infarction secondary to a multivessel Spontaneous Coronary Artery Dissection in the Circumflex (type 2a) and LAD arteries (type 2b).  ARGH!

So obviously I went and looked it up on Professor Google.  I know! I know! A recipe for trauma and worry, straight away!

AI informed me that the first bit is usually abbreviated to a STEMI and “is a severe complete blockage which can cause death or extensive damage to the heart muscle”.  ARGH!!  This was caused by a pair of SCADs (or two possible SCAD areas?) leading to two of the main coronary arteries – the LAD blockage is also known as a “widow maker”.  ARGH! Type 2a meant a partial blockage in part of the artery before it was normal again and Type 2b meant the same but the narrowing continued to the end.

 The letter went on to say that I had “Transmural scar of apical inferior wall on the CMR with associated hypokinesia, but overall preservation of LV systolic function (EF 59%)…” ARGH!

This, AI told me, meant I have a scar that goes right through the muscle of the heart on the lower part of the pointy bit of the heart – this had shown up on the specialist cardiac MRI scan.  This scar meant my heart was not beating as strongly as it should.  ARGH! But the working of the left ventricle was preserved with an ejection fraction of 59% (how well the heart is working – it should be 50/55% – 70/75%). ARGH!!

i was panicking big time!  My head felt like it would pop!! Had I nearly died?  Was it a lot more serious that I had realised?  Should I have been panicking more all along??!!

Luckily my dear sister-in-law in Brazil chose that moment to message me and by the time I had replied to her I had calmed down enough to come to my senses – yes, a complete blockage might have meant my husband would have been made a widower, but it WASN’T a complete blockage.  Yes, the heart is damaged BUT still working just as well as normal.  Plus, I was told that last bit at Papworth at the time. 

However, I do wish they would not send letters like this out.  Either write it in English as I have tried to do or, even better, discuss it during the phone conversation and explain how that sounds in Medic-Speak.  Best of all, do both those things.

Luckily, I have an appointment at my local hospital with the general cardiologist soon. I really like talking to him – he has no crusade to get ablations done and he will able to tell me if I have understood this correctly or not. 

The other thing was – I already have the rare genetic disorder HHT (1:5,000-50,000 people) and have now had a STEMI SCAD.  Only 1-4:10,000 STEMIs are SCADS!  And only 15-20% of SCADs are multi-vessel.  So, I’m rare on rare on rare!!  Who wants to be ordinary?  I DO!!!!

Last week I had the long cancelled (see previous blog post) CT-Scan.  It’s called a Head-to-Hip scan and is to look for further sites which may turn into SCADs or equivalent.  Having HHT (a malformation of the blood vessels, leading to bleeding) means they are bound to find loads of weird and wonderfully “curly veins and arteries”.  The above-mentioned letter already mentions an “increase in coronary tortuosity” – i.e. the heart blood vessels are pretty windy or crocked.  I’m a wreck!!!!

 

16 September 2025

I had a lovely meeting with work.  I took the union rep along just in case and it was nice having him there.  In fact, they couldn’t have been nicer – it was quite moving – my boss and his assistant kept telling me how much I was missed and the latter said how he couldn’t walk around the leisure centre without being accosted for people demanding to know when I would be back!

I was offered a choice between:

1.       Return to work but with a medical review (by management!) if I have more time off sick

2.       Resign

3.       Medical retirement drawing part of my pension, if eligible

4.       Case review hearing – but done by their management!

 

I really felt I had no choice to come clean with them and be as transparent and honest as possible, I told them that, as far as it was possible to tell, the SCAD should not recur and therefore could be ignored BUT that the Afib is an ongoing issue and it is likely I will need further treatment and /or sickness. I also said it was very likely I would need another ablation or a pacemaker and so be off for ages again. 

The whole meeting was so emotional, I really surprised myself as I kept breaking down.  It wasn’t really about the job; I think it was more the effort of reliving just how rubbish everything has been since September 2024.  Or, to be totally honest, since August 2019 when this whole AFib saga reared its ugly head on a regular basis – four ablations, 12 cardioversions, laser treatments and a skin graft on nose and then to cap it all a blooming rare SCAD.  It just all felt too much.  I even had to leave the room at one point I was so upset. To put it in context I have only ever cried once at work before and that was when I thought my Dad had cancer (he did actually).

Anyway, they were stunned by my honesty and I made the further suggestion that I would be happy to do classes on a freelance basis. So, they then had a further meeting without me or my rep and the following day, I was also offered the further options to take on future freelance classes and/or casual work to cover holidays and /or sickness.  As I said, then they don’t have to pay me if I get ill.  But it obviously means I will have next to no steady income plus, if I get ill, I will have zero income.

Much to think about while I wait for them to come back with further information on the latter two options.

 

26 September 2025

Update to the work situation – they have offered me ‘my’ two existing classes back plus a chance to run two new ones plus an offer to take over another existing class.  Or I can do casual work, covering classes on an ‘as and when’ basis.  Further enquiry revealed they are not obliged to find me any work but neither am I obliged to accept any work.  However, this pays at 56% of the freelance rate so I cannot see the benefit at all.  I think I will have to go for the freelance as it is what I have wanted to do for ages.  But but but – what about the AFib?  But then if I stay there as a permanent member of staff and I am off too much I will either be ‘reviewed’ (see above) or my pay will cease anyway.  It’s all so stressful.

But I also would like to set up a local class and go back to my Sports Massage.  But what is the point if, as soon as I get clients, I have to stop it all for six months or whatever?   

 

I also saw my lovely local cardiologist – he spent well over 30 minutes with me discussing SCADs and Afib.  In fact, his first words were, to the effect of, “blinking heck – a SCAD as well!?”.  He talked about the Afib a lot – doesn’t think the Pace & Ablate option would relieve my symptoms AND it would heavily curtail my active lifestyle – basically it’s for old people who purely want to be able to function and move about a bit!  He also said he thinks 3rd and 4th ablations are a waste of time - basically if it hasn't worked after two attempts why try again (and he has said this to me before - albeit while advising me to listen to my Electrocardiologist)

I told him I had an appointment the next day at Northern General Hospital in Sheffield to discuss the Hybrid Mini-maze ablation.  I expected him to be as sniffy about it as he is about normal ablations but to my complete surprise, he was very positive and we talked about that for ages too!

Then we discussed the SCAD and he looked at the letter and said “the SCADs were serious, but this letter doesn’t fully make sense” – it seems you cannot have full depth damage to heart muscle AND it continue to beat normally – it’s impossible!  He also said it would all be based on the MRI they did at the time and so there would have been massive inflammation.  He actually doesn’t see the point of the later Head-to-Hip scan as he said even if they find things they often can’t be treated – he thinks too many doctors order too many scans!!!  As I say, he is quite a character! 

He said I had had two SCADs in the two different arteries as detailed in the letter and he suspected it was one on the first day I had pain (sent home with diagnosis of muscle spasm) and then the other two days later.  EEEK!   He said nobody is really sure why they happen and so it is pretty difficult to give any advice of things to do or avoid, apart from the obvious stuff like no high blood pressure, keep weight down, exercise etc.  In fact, he emphatically said “Do not stop your exercising” which was encouraging as people are always telling me that I do too much (usually overweight people as it happens 😊)

When I complained that all this cr** was happening to me despite my efforts to be fit, slim and eat well all my life, he said, sympathetically, “Yes, it a p*ss*r, isn’t it”! As I say, quite a character!!

As always, it was uplifting to speak to him and be able to ask lots of questions and he is a real chatterbox, like me.  The whole waiting room gave me daggers when I finally left the consulting room 😊 😊 😊

 

 

I’ve also been for the Sheffield appointment now – but that is something for the next post….