An Update post SCAD and post AFib 17 July 2025

 

28 May 2025

I’m now 25 days post-SCAD and five days post last Atrial Fibrillation episode.  Boy, do I feel rough.  Six days ago, I was able to walk nearly a mile at close to my old speed, ok I was tired later and I had some SCAD chest pains but there seemed to be light at the end of the tunnel (It was a train coming!!!).  The Cardiac Nurse at Papworth seemed to think I would recover a lot better than I ever did after an ablation and my ‘performance’ that seemed to prove that.  After all, according to my meticulous research (and having far too much time on my hands) I had evidence that post-Ablations my average time to be able to walk a mile was 29 days (7 – 48 days) and this was only SIX days and I did it without innumerable stops and at a fair clip!

 However, since the AF episode I managed to walk a very slow 0.30 miles with a rest day in between.  I’m tired all the time, I feel sick and light-headed much of the day.  This in turn is making me feel very depressed and lethargic.  In short, I am a miserable cow.  I can only surmise that this is the delicious combo of a SCAD, Afib and the damaged heart/myocarditis being shaken up by the Afib.  What a flipping mess!

 1 June 2025

Tried two more walks after that one and barely managed a few hundred metres.  Disheartened.  Am managing to do some gentle stretching and yoga and do a bit more in the house.  Feel worse than I did after initial SCAD.  Going to try a walk today but, to be honest, I’m scared.  Scared that it will feel awful and I will be demoralised. 

 Hospital appointment tomorrow and I am worried that I won’t even be able to walk through the hospital to the clinic…  I hate being like this!!!!

 4 June 2025

Terrible nosebleed yesterday.  Not helped that I lost the plot and started bawling which made it worse.  Forty minutes of fast bleeding.  Felt like crying most of the day.  Then I got a call from the hospital, where I had a uterine scan yesterday, asking me to go in for biopsy and offering me an appointment in six days’ time!!!  Never a good sign.  Can’t make that though – have an ENT appointment at Addenbrookes!!!! So, biopsy Thursday; Papworth Friday.  At least, I get to go out!!!

 Then in the evening I noticed once again that I am having trouble with the vision in my left eye so I have now booked to see optician on in two days’ time.  What an exciting life I lead.  Five medical appointments in 10 days! 

At least I managed an EIGHT-minute walk without too many problems 11 days after the Afib episode.

 

14 June

Six weeks since the SCAD and 22 days after the Afib and I am finally feeling stronger.  It happened all at once in the last few days.  My breathing was not the issue when walking but my legs were so wobbly, but I did a mile again (albeit I felt like Bambi afterwards with wobbly legs!).  Then did 1.30 miles at a decent clip despite the heat.

 I also got through all those medical appointments – eyes were ok (floater, probably notice it more because I’d been so run-down and tired); ENT appointment (see below); the endometrial biopsy was not as bad as feared (mainly because I didn’t stop talking long enough to feel any pain) and the Afib appointment was basically “stay on amiodarone until it stops working or you get bad side effects, then …”???

OMG, the ENT appointment – what a disgrace!  I elected to go to the big teaching hospital an hour away as my local hospital was useless with HHT. I might as well have not bothered.  To be honest I didn’t expect them to know much and was willing for it to be a learning exercise for them since HHT is so rare, but the doctor (who looked about 19! I must be getting old) was clueless.  He asked me about the bleeds and then asked if he could have a look.  I smilingly said no as it will bleed.  Then I said that if it would be helpful for them (he had a student with him) I would allow it – he then explained that if he could have a look he could see if there were any bleeding spots and CAUTERISE them!  YOU DON’T CAUTERISE HHT (unless dire emergency!).  I said as much and he replied “Yes, I know” although he obviously didn’t.  He didn’t even ask me what tactics I used to control the bleeding (transexamic acid tablets and TXA serum) and basically was not really interested in HHT.

 My main reason for going along at all was to see if they offered the KTP laser treatment I need instead of the long trip to London.  He didn’t know!!  I asked if they planned to introduce the sclerotherapy technique and he didn’t know about that.  The nurse in there (an older chap) ended up taking over and suggesting I speak to my ENT expert at UCLH (the marvellous Mr Gane) and HE would know if THEIR hospital did laser treatment!!  I couldn’t have made it up.

 Because I was still so wobbly on my pins a friend had driven me and when he got my report on the appointment he virtually shouted “Well, I know more about it than him!”.

 9 July

 Last week I was tired, not helped by scorching weather, and very depressed for no real reason (apart from all this rubbish that keeps happening to me!).  I kept crying all of a sudden.  Delayed reaction?

BUT this week is better – I’m now walking three miles at a fair pace, I’ve ridden my ebike on green (lowest amount of assistance) and I am able to do stuff around the house though I am still careful to have rests too.

 The biopsy came back clear so that was good too.  Last week I had an Occupational Health assessment for work – it was very difficult.  It was quite upsetting dragging all this stuff up again to a complete stranger and, to be honest, she wasn’t really listening to what I was saying.  I told her that Papworth had said I would make a full recovery but before I knew it, she was telling me that this was very serious, I needed to take it easy (I am!) and I may never make a full recovery and be able to do the things I enjoy let alone go back to work.  When I told her I was planning on returning to work in a few weeks she laughed in my face and said that was totally ridiculous and that my GP should sign me off for two more months – which he has done. 

 It all was so upsetting – do these people even realise the effect their words have – if that is the truth at least deliver it with some empathy…  And she was a nurse!  I was completely destabilised by this – I kept telling myself that one of the UK’s (world’s?) premier heart hospitals had told me I would make a full recovery and they knew more than her but the damage was done.  When you are vulnerable these things really sting even though your logical brain knows you should not be letting it bother you.

 I had got some sort of perspective back by Monday when the report dropped in my inbox.  She had missed out all that I had said about Papworth’s prognosis and equated Afib and the SCAD together as “cardiac issues”, despite me telling her that the cardiologists at Papworth, Addenbrookes and my electrocardiologist had all said they were not in any way related.  The former and the latter even went back over my scans to see if there was any way they could be linked.  But it is all just a horrible coincidence.  And anyway, the Afib is electrics and the SCAD is plumbing so no link there. 

 Of course, these Occ Health people work for the company so I wonder if they are telling them what they want to hear.  I have had masses of time off work in the last six years but most of it has been recovering from ablations rather than any emergency stuff.  If they want to get rid of me over that, then go ahead but do not do it by jumbling up two things together (three if you count the HHT nose ops).

 Today I have a functional assessment at my local hospital as the first stage of my Cardiac Rehab.  I hope to get some answers then (I have a ton of questions all beginning with “When can I …”!), but suspect they will say I have to wait until I get my appointment at the SCAD specialists at Glenfield Hospital in Leicester.  But my understanding was that that appointment was more for research than treatment and who knows when that will be anyway?  It’s all very unsettling.