Coronary Heart Disease verses Spontaneous Coronary Artery Dissection?

[ThreeGoldens]

Have been following this Forum since shortly after my HA on Friday 1st Dec 2017. So many of your problems and issues have reflected my own - it has been a great help. However I now find myself in a position where I don't know what to think, feel or where to go.

I was 52 when I had the HA. Had always been active and busy - swimming at least twice a week; walking our three Golden Retrievers at least an hour a day; helping my mate muck out her five horses once a week; running a busy house and holding down two busy/physical part time jobs; always cooked food from scratch; always suffered from hypotension; cholesterol and sugar levels always in the acceptable range; no history of HD in the family. So the HA was completely out of the blue.

Treatment at the hospital excellent - three stents fitted and discharged 48-hours later with usual cocktail of meds - Aspirin, Bisoprolol, Ticegralor, Ramapril and Atovastatin. Discharge notes stating "excellent outcome" and "no sign of heart failure". I have clung to these comments - they are basically what have kept me going for the past 16 months.

Sadly it would appear the I had fallen through the cracks in the NHS as I did not receive any cardiac follow up appointments (despite asking); GP as useful as a chocolate teapot. I constantly complained about breathlessness, being tired, 3-hour nose bleeds, bruising like a ripe peach - but it all fell in deaf ears.

To cut a very tedious and emotional story short it would appear that for the past 16 months I have been treated as though I have coronary heart disease. However following first follow-up appointment (March 2019) with a cardiologist and a review of my Dec 2017 scan and a hastily arranged March 2019 scan, I actually had a spontaneous coronary artery dissection. However the cardiologist believes it is "academic" to investigate the cause of the HA. I am supposed to have a review of my meds with another consultant, but a month on from that appointment I am still waiting. Basically the hastily arranged scan showed my arteries and vessels as being clear and free flowing.

Honestly I am shocked and disappointed at the way the hospital has dismissed the situation. I truly believe they saw a 50-year old woman present with a HA, menopausal, slightly overweight and instantly thought 'heart disease'. They judged the book by its cover, not the content.

I guess I am looking for some words of comfort and support. Where do I go from here? I'm not a pushy or persistent sort of person. I'm tired of fighting the NHS - I did that trying to ensure the right care for my late mother who had dementia and my late father who had terminal cancer. I'm lucky to have a really supportive husband and sons, but I think they are are also at their witts-end.

Your advice and words of encouragement would be really appreciated.

[Hidden]

Hi... well the positive is that after the scan all the arteries and vessels are clear and flowing well. What type of scan did you have ?

Sadly, judging a book by its cover is how some of us fall through the diagnosis black hole! And not just with Heart related problems. Also I believe that women in our age bracket, if there are no red flags ie Cholesterol, will have their symptoms assigned to the menopause. It happened to me 😟.

Unfortunately there seems to be no join up between hospital; cardiac nurses and GP. Somehow we are supposed to know this and become the link.

The symptoms you described: breathlessness; bruising and blood not clotting can be attributed to Ticagrelor as well as the Asprin. At the moment I have the most wonderful bruise on my wrist which initially came up like a mandarin. I could not remember knocking it, so took myself off to the docs.

Have you been assigned a Cardiac Nurse? If not, then I’m afraid you are going to have to get pushy. I understand your reluctance considering your experiences with both your parents. But this time you need to do it for you...

[ThreeGoldens in reply to Hidden]

Hi there, thank you for taking the time to respond. I know Ticegralor is causing the breathlessness - I am on a 3 year course (a year for each stent perhaps!) at 2 x 90mg/day for 1 year reducing to 2 x 60mg/day for 2 years. GP refused to do anything without cardiologist consent. In the letter I received following my March 2019 appointment the cardiologist said that because my arteries and vessels were clear they could stop the Ticegralor altogether, just like that! I just don't understand how they can play around with medication???

Sadly no, I don't have a cardiac nurse - never been assigned one! Spent today trying to speak with someone at the Heart Institute - tried the "direct appointment" number, the PALS number and my cardiologists direct number - no answer - mailbox stating they are full and cannot accept any more messages. I have an email address to make a formal complaint - will think about it over the weekend.

[Fortepiano]

Bear in mind it is possible to have a SCAD and to have coronary artery disease as well. It's good that your present scan shows your stents are working fine. As Penfold 5 says, your symptoms are typical of Ticagrelor, which is normally only given for 12 months to prevent stent re- stenosis.

Several people on here have had a SCAD so a search should show some useful posts with references to support groups.

All the best

[ThreeGoldens in reply to Fortepiano]

Thank you Fortepiano. I have checked out a couple of sites - one of the stories on one of the site could have been about me!

[jimmyq]

You are having a rough time of it at the moment. It's time to sit down, relax and take stock of your situation. Is there anything you can do to improve your health? If so, do it. If not, don't worry about it. Writing it all down might help to put it in perspective or talking to someone you trust. You have been through a traumatic experience and you need looking after, by yourself and health professionals. What about a nice, relaxing holiday?

[ThreeGoldens in reply to jimmyq]

Thanks for responding. We do have a holiday planned - 3 weeks in fact to a beautiful gite in Burgundy - we have been going there for years - I call it my "happy place". I know I should be looking after myself, but have spent so much time looking after my family I find it difficult to stop. I have resurrected my knitting hobby which certainly seems to be helping me relax of an evening.

I am keeping a diary of my BP readings, pulse rate, fluid in and fluid out (sorry if that's TMI!) and everything I am eating. I want to prove to the medical professionals that I do not have a high sugar/fat diet. I know I should get back to my swimming, but honestly I don't have the energy and I'm embarrassed to because of all the bruises!

[jimmyq in reply to ThreeGoldens]

For your fitness, assuming you can't run about, you could give Shibashi a try. You don't have to go out, it's very gentle and easy to learn. It takes about 20 minutes. Just follow the video: youtube.com/watch?reload=9&... I play it on YouTube via Google on my PC and "cast" it to the TV in the lounge to follow it. "Trust Me I'm A Doctor" found that it gave a good workout without strain or pain. My tutor says it can be done every day.

[Hidden]

Which hospital is this, if you don't mind me asking this?

They all do seem to have this same attitude, brushing abnormal results off (like some speckles to dust off) by saying "all is fine and please, go away because I'm busy with other patients".

This seems to be common with different NHS departments e.g. Neurology/Vascular etc, not just Cardiology.

[ThreeGoldens in reply to Hidden]

Hi there - the care and emergency treatment I received on 1st December 2017 was amazing - it was just two hours between phoning 999 and then finding myself sitting in a bed on the cardiac ward having had 3 stents fitted, thinking 'what the heck just happened! Could not fault. I live in the West Country and was taken to one of the best hospitals for coronary care - sorry dont want to be any more specific.

The problem as I see it, from a patient's perspective is that there isn't a joined up approach - my GP won't liaise with the hospital, the hospital is impossible to talk to and the patients are stuck in the middle.

I was gobsmacked at my March 2019 appointment - I had to tell the cardiologist the medication I was on - he didn't seem to have any of my records in front of him! So where was my file??

[Hidden in reply to ThreeGoldens]

It was very kind of you, ThreeGoldens. Consultants not having looked at patients notes would be one of the commonest (but they seem to pretend that's entirely normal).

Nobody would dispute the superior emergency care on the NHS. It's a bit like being driven inside the Rolls Royce *emergency care* , only to be chucked into an old banger that has no engine on.

Once you get transferred to a ward from the emergency intensive care, I have heard many patients saw the sudden "difference." YMMV, of course, depending on the hospitals.

Thank you for letting me know your approx. area. I was wondering if the hospital was one of the London Cardiac centres where I happen to go to.

I often think that's what a lot of vascular/cardiologists do - looking at your artery not clogged up (as they specifically look at that as a definite sign of disease, something "they" have to deal with), so these patients with clogged arteries get the attention first and foremost and the rest of the NCA (non-clogged artery) patients (even though we had HA/MI) you get thrown out of the room with some dubious look on the consultant's face as if you were an imposter. It's called, apparently, "Imposters Syndrome"! You got some serious conditions but they don't want to deal with it. It's just too obscure.

They spent a fortune to save your life and got you stented, that's done and you should be grateful and stay quiet (do not bother cash-strapped NHS) if that makes any sense? After care on the NHS? It seems different hospitals are better than others, but as you know, it's NEVER easy or simple for patients.

Enjoy your holiday in France "a happy place".

[kizza67]

I to had a SCAD and I know not many cardiologists fully understand them I was lucky to be referred to dr Adlam a specialist in Leicester and I am now off of most of my medication. I didn't have any stents and luckily my heart wasn't damaged to much by the HA unfortunately there are many unanswered name where SCAD is concerned I find the website very good

[Hidden in reply to kizza67]

Is it a condition commonly considered as a rare disorder, by any chance?

I had known someone, who had SCAD event whilst he was on treadmill, he sadly died.

This thread was useful to make me educate myself and realise that it's not always fatal.

[kizza67 in reply to Hidden]

From what I've been told they are quite rare they are doing research at Leicester into the causes of them as at the moment there are no significant reasons as most people who have them are not classed as having high risk of HA

[tjwgc in reply to Hidden]

Yes, SCAD is currently classed as a rare condition and research is being done by Leicester university. There is a group called BeatSCAD beatscad.org.uk/ that is trying to raise awareness of this condition and also raise funding to support the research. They have useful information on this condition and provide support to survivors.

[Hidden]

kizza67

Thank you for sharing.

Rare diseases. NHS are not very good at dealing with these, except for emergency situations, commented earlier.

Cardiology is fine so long as you had a straightward clogged artery/arteries, it seems. Other than that, they are not particularly interested.

It's brillant to hear that you are under a very good specialist.