Something new!!! What's a SCAD?!?!? 1st May 2025

 

You cannot be serious! A new issue!!

1 May 2025.  I had a massage client booked in – it is someone I had massaged before but years ago - in fact just before I was admitted to hospital with the start of this whole AFib roller-coaster in August of 2019.

 He and his wife, also a client, had been very kind to me – in fact, she visited me in hospital to bring me an eye mask to help me sleep at night and he emailed me to advise me on how to deal with the hospital (who were being beyond useless – see previous posts!).

 Anyway, literally minutes before this nice man turns up, I took a swig of hydration drink and was immediately seized with terrible heart burn.  I managed to get through the consultation and then a grabbed an anti-acid and began my massage.  He was asking me about all what had happened to me Afib-wise in the previous six years and I was struggling to speak in coherent sentences.  Literally less than five minutes into the massage I had to say to him that I was going to have to stop as I was going to pass out.  I was dripping in sweat and he immediately leapt from the couch and took control. 

 He used to be an anaesthetist so I could not have asked for a better person to look after me – he called his wife (a critical care nurse!) and raided my cupboards (with my permission and directions!) to get an oximeter and blood pressure machine.  When his wife arrived, she had a mini-ECG machine and all showed OK.  I was incessantly apologising and very embarrassed, but the pain was so bad that in the end I just let them take control.  He went to the village hall and collected the defibrillator and placed that on me “just in case” while she rang an ambulance.  They were quick but very relaxed in taking measurements.  There was some debate about having aspirin because of my bleeding disorder (the HHT) but in the end I agreed. 

 I was in an absolute delirium of pain (just like after that horror show after my last Afib episode in hospital – Nov 24) – I vaguely registered a friend, a neighbour and then my darling husband being there before I was carted off to the local hospital.  I was in so much pain – a genuine 9/10.  They gave me aspirin, paracetamol, GTN spray (cautiously given my reaction in Nov 24 when my BP dropped to 53/33) AND oral morphine, but it only took the edge off.  The morphine in particular was VERY disappointing - I was expecting a blast of feel-good euphoria, not a barely perceptible reduction in pain!

 Anyway, a whole day of tests before they concluded that I had had a chest wall spasm!!!! I was discharged and told to take it easy for a few days and not carry a backpack when I went to London for the coming weekend.

 I phoned my client and told him the good news and thanked him and his wife profusely.  Felt fine the next day but did little…

 The following day, we were up early for our annual trip to London with our Suffolk friends.  We planned to visit the Hunterian Surgery Museum and then just wander around, spend the night in Canary Wharf and then come home Sunday afternoon.  It’s always a fun weekend and the weather was lovely.

 As soon as I washed my face a little HHT nosebleed started.  It was virtually nothing but it would not stop – trickling down my throat and making me cough.  It continued for the next 1.5 hours until everything else happened…

So, I was sat in the car, coughing up bits of blood and feeling fed-up.  Suddenly the pain came back but worse than ever.  When we arrived at the station I just went straight to a bench and sat down.  I was thinking it was another chest wall spasm and telling the others to collect their tickets.  I was telling my husband and friends to go without me, that it was just a spasm and I’d be fine (!!!).

 The pain got even worse (10/10) and I had the overwhelming urge to lie on the pavement.  It was filthy and I had on a nice jacket but that was what I needed to do…

 Hubby phoned an ambulance and told them I had all the symptoms of a heart attack.  He was told the wait would be ABOUT AN HOUR!!! No advice to grab the station defib (I never thought of it either) or offer to send a First Responder, just “call us if it gets worse”!!!!

 In the meantime, our friend had phoned his partner and she came back, scooped me up and drove like a maniac to the hospital.  There was nobody on the reception desk at the local hospital so I had to walk right through to the ambulance admission desk.  I was doubled-up and in agony.  They then told me to walk back to the reception desk (a good 30m or so) before someone got me a chair, but I’d already sunk onto the floor.  (Interesting that I always had the overwhelming desire to get down low – self-preservation I think!).

 At this point they began to take notice of me and I was admitted.  Not much was done initially – it’s nothing like in the films!!  But eventually they took me to the Rapid assessment.  During this whole time, I was writing in agony.  I’ve normally got a quite high pain threshold, I think, but not this time.  I was begging for pain relief.

 Finally, they broke out the GTN, aspirin, morphine combo again and stabilised me ready for the transfer to Papworth.  The doctor told me I was having a heart attack – which despite everting was a big shock!

Everything seemed to take forever but the pain had dropped a bit as a result of the drugs and finally – finally – I was blue-lighted to Cambridge.

 I’d been told to expect a whole gaggle of people waiting to rush me into theatre for a stent, but despite the paramedics ringing as they left Bury and 10 mins away from Papworth there was nobody there.  It was like a comedy! A locked door.  The paramedics rang the bell and finally I was admitted.  A stroppy nurse made a fuss that they had not been forewarned and told them to put me in the waiting room!!!  I was lying thinking “WTH! Now I’ve got to wait even though I’m having a heart attack”

 I was actually admitted to the Cath Lab immediately after that and there was a whole team of blue robed medics waiting to administer to me.  As soon as I was scooped off the trolly onto the Cath bed the pain stopped. They slopped that pink iodine stuff all over my arm and also my groin in case they couldn’t get the catheter in the arm! The angiogram was performed in next to no time – at which point I was told there was no blockage and no heart attack!

 I was admitted to the high dependency ward with two nurses to keep an eye on me – and then they noticed I was developing a large haematoma.  So, ice and elevation and massage to stop a clot forming.

 The nurse told me they suspected a SCAD (Spontaneous Cardiac Artery Dissection) so a tiny split or flap in the artery wall.  It’s not a heart attack as there is no blockage, but the outcomes can be the same – lack of oxygen to the heart, severe pain and even sudden death!!  EeeeeK! I needed an MRI scan, but as it was a Saturday there would be none available until Tuesday (bank holiday weekend).  So followed a depressing few days – I was pumped full of anticoagulants because they had to be sure that a clot had not caused the episode, but obviously they played havoc with my HHT bleeding disorder. 

On Tuesday I was told the MRI machine was too busy with emergencies so I would have to wait until Wednesday.  I believe it was Tuesday when I had a two-hour nosebleed – just slowly dripping but just would not stop.  Papworth sent for the ENT on call doctor from next-door Addenbrookes Hospital and apparently, they were ever so excited to have an actual HHT patient to see!!!  They bought all sorts of jollops and kit with them and I think they were disappointed not to be able to do anything.  I even let them put some sort of ‘expanding foam’ up my nostrils (though I had to gag it out in the night! HHT is such a classy disorder!)  I had to sleep slightly propped up and in horror of it bleeding so I would not be able to have the MRI.

  And so Wednesday I was panicking I would not be able to tolerate being in the MRI machine with blood, snot and clots running down my throat as I was coughing and gagging such a lot.  I really was in a panic as they wheelchaired me down to the MRI suite and I had to give myself a stern talking to “You can’t go home until they know what is wrong – they can’t know what is wrong until you have this MRI – and so you have to get through the MRI”.  THEN I found out that it would last an hour and had to be completed in one go!

 And it did last an hour, and I was swallowing snot and dried blood and fresh blood throughout but afterwards he said I did not mess up a single shot (it’s all “breathe in – hold – breathe out”). 

 That afternoon a young cardiologist came to see me and said they had already looked at the MRI, as suspected I had had a SCAD and it was unlikely to recur and it should heal itself. Also, that although part of my heart was beating slowly due to damage, they expected it to recover, and I would be able to return to my full life running et al.  I needed to have a Head-to-Hip CT scan to check nothing else waws awry.  And I could go home! I was so shocked by that offer to go home that they ended up saying I could stay until the next day! I could also come off the aspirin and the other anti-coagulant though stay on the one I use for my AFib. 

 It was that same day that I had two-hour nosebleed in the afternoon and another two hours in the evening!! I used the packing stuff they gave me but the drawback of that is that it has to stay there until it works itself free – about FIVE days.  Yuk!!!  Sadly, it would take 5-10 days for all the anti-coags to clear the system but the packing did a good job of keeping the bleeds under control – albeit that I looked a fright and was too scared to wash my face! 

 Next day it turned out I would not be having the CT scan after all and it would be done as an out-patient.  I would be discharged and have an MRI repeat in three months to make sure it had healed.  While this cardiologist was telling me all this, I was having an episode of atrial Tachycardia – so he sent for his senior who was very concerned and wanted to give me amiodarone.  (Quick aside – cardiologists LOVE amiodarone; electrocardiologist HATE it – why?).  I explained that I had just spent six months recovering from an ablation to get me off the amiodarone and had no wish to go back on it just coz of 1–5-minute episodes, 0-3 times daily.  He decided that he needed to talk to my Electrocardiologist and so I was kept in another night!  They agreed with me that it was not yet serious enough to need such toxic medication.

 I have to say I was so impressed by Papworth’s attention to detail – every nurse that came to see me knew about the fact I might bleed, that I knew how to deal with it myself and not to be alarmed but to keep an eye on me.  They bothered to educate themselves about HHT, they called in the ENT specialists (and spoke to Haematology at Addenbrookes too) and were willing to work with my EP. 

(Compare and contrast to my local hospital who blankly refuse to ever call Papworth or take advice from my EP when I have been admitted there – in fact, they seem to regard any suggestion along those lines as a personal and professional afront!  And when they called ENT to see me once they knew nothing about HHT, had no desire to learn and then, after offering me incorrect treatment (cauterisation) said that I had refused treatment and they could not help me! All in a very rude manner, I might add!

 How can a disorder, albeit rare, that in 90% of sufferers manifests itself as nosebleeds, not be known to ENT specialists and, even worse, how can they have no desire to learn about it!!!)

 Finally, after lounging about half a day in my penthouse private room with its en-suite I was sent down to ‘rough it’ in the Discharge lounge to await my discharge letter. (Aside – the Lounge is fine – comfy chairs and they bring you coffee and biscuits, so not roughing it at all really.  Incidentally, the far end of it is where I waited for my ablation back in October)

 While waiting for my husband to collect me I idly perused the discharge letter and you can imagine my shock to read that during the initial angiogram they had discovered a Pulmonary Artero-venous malformation (PAVM) which is basically mis-plumbed arteries and veins in the lungs as is very typical in HHT.  I was like “Now what!”.  And this can be serious leading to infection getting to the brain and causing abscesses etc.  I thought my brain would fry I was so stressed.  No where did it say anything was being done about this it was just sort of mentioned in passing!

Eventually, I decided it must be minor otherwise they would have done more, but it would have been nice to be told – I was not even sure they had linked it to the HHT as I had never mentioned that as a possibility as I had not known I had a PAVM.  Regardless, though, at the very least I need to monitored every 5-10 years and take antibiotics with dentistry work.  Once again, a stern talking-to was required – it’s probably been there for years anyway (forever?) and it cannot be bad as it would affect my breathing and I was running just the day before the first SCAD incident.

 Called in at the GP on the way home all the same as I was so freaked out – OMG, I looked a fright – dirty hair, blood smeared on nose with the bloody bung visible and I could not stand for long as I was a lot weaker than I expected (six nights in hospital not moving does that to you!).  They told me to call Monday to discuss the letter.

 So, the outcome was that the GP is going to make sure that Papworth have booked and sorted out everything they should have regarding follow on scans and the lung issue.

 

And now I need to rename my Blog “The HHT and Afib and SCAD Athlete”….. 

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