Spontaneous dissection of artery

[tjwgc]

Hi I’m new here. I am recovering from a heart attack that was caused by spontaneous dissection of the artery. I’m feeling frustrated and scared because it seems there is nothing I can do to try to improve my health or prevent another attack because the cause of this one is not known. I would be interested in hearing from anyone else that has had this diagnosis to hear how they have coped.

[Heartily]

Hi, I'm recovering from ha. They fitted stent's, but the reason is unknown except a slight narrow blip at joint in the artery. Might have been there since birth. Fit healthy, active 70 year old. Slim low BMI, don't eat meat, mainly fish. Parents lived in nineties, so don't know. Live each day as it comes and grateful I carry aspirin, and can dial 999. Sometimes we will never have an answer, but that's what life is, chance!

[tjwgc in reply to Heartily]

Fair point Heartily, I guess I’m still struggling at times to come to terms with having had a heart attack at the ripe old age of 48! Especially as I had made lifestyle changes to eat more healthily and get more exercise, plus had just stopped smoking - almost feels like a punishment for doing the right things!

[laura_dropstitch Heart Star]

Hello. Have you heard of Sally Bee? She's worth reading up on, has been through similar to you and has a very positive (but realistic) recovery story. She has some lovely healthy recipes too

I have a totally different heart condition to you, but having been diagnosed with unexplained heart failure at the age of 31, I can relate to your shock and the feeling that you are not the demographic who should be going through something like this. But there are lots of us younger people on this forum, always happy to chat about our experiences, so don't feel alone in that regard. Feel free to message me any time if you think I can help.

These early days are the hardest, hopefully things will begin to look brighter to you soon. Lots of love x

[tjwgc in reply to laura_dropstitch]

Hi laura_dropstitch, thank you for writing back to me. No, I haven’t heard of Sally Bee, is she on this forum? Wow, so you were younger than me when you were diagnosed. How did you manage to come to terms with it?

[laura_dropstitch Heart Star in reply to tjwgc]

Sally Bee is (now, since having her heart incident) an author/TV cook focusing on heart health. I've never actually seen her on TV, mind you, just found out about her when googling young people with heart conditions a few years back. Definitely worth looking into her story.

As for how I have coped... It's a long story and I'm just dashing out the door, but I will come back to you about it

[laura_dropstitch Heart Star in reply to laura_dropstitch]

Hello again I'm not sure what to tell you about how I've come to terms with my diagnosis as it's been such a long process and I was really in a very dark place for the first few years. I realise that sounds like a long time to be miserable, but a lot of my unhappiness was related to the fact that I wasn't able to have any more children (I was pregnant with my first, now only, child when I was diagnosed) so I'm not sure that I really addressed the wider issues properly until I had worked through that.

Things that have helped... I was able to talk to a psychologist who is based in my cardiology department so has a really good understanding of heart conditions etc. That was very helpful, even just in terms of having someone external to my life to vent to without having to worry about seeming selfish or like a big wimp, but also in terms of CBT strategies etc.

After a few years resisting, I ended up trying anti-depressants and found them incredibly helpful, just allowed me to take a step back and put some of the psychologist's advice into practice and also to think everything through properly.

Both of these approaches are probably effective for some and not for others and may or may not work for you, but I would say it's worth trying anything that might help if you are feeling down/anxious. I was very dubious about medication being helpful to me, but as soon as I tried it, I found out that it did help and wished I had given it a go sooner.

Other things... Well, at first I thought I was not the type to have heart disease (young, healthy, previously never been ill) and was kind of in denial about it all. I saw myself as very different from the other people in the waiting room - they were heart patients and I was an anomaly who wasn't really meant to be there. But once I accepted what had happened to me and read about other young, healthy people who'd been through similar, I was able to become more informed and start facing up to things and regaining some control. I took more of an active interest in my treatment, began asking specific and practical questions when I saw my cardiologist, did a bit of reading on why advice I was being given would help... It's great that you've found this forum already and will probably get to that stage a lot more quickly than I did.

Early on, I was advised not to google my condition. In my anxious state, I took that to mean that I couldn't handle the truth Google had to offer and...I googled. Everything I read terrified me and gave me a very negative view of everything that was going on. I thought this was a harsh reality that I should face, but over time, as I learned more about my condition, I realised that the vast majority of the information on google did not apply to my individual case and often contradicted the outcomes that my cardiologist was predicting. My cardiologist and my heart failure nurse are more than happy to answer my questions (big or small) so now I make sure consult them rather than Google. The information I get is more accurate and a lot less terrifying. It's always a good idea to note down any queries or worries you have so that you can ask them when you next have the chance, it's very easy to forget them in the appointment room.

It's six years since I was diagnosed and my treatment plan is constantly evolving as new discoveries are made. There's so much fantastic research going on. Reading about it makes me hopeful that the future will be bright and that things could very well get better rather than worse. My condition is progressive, but I'm doing (slightly!) better now than I was a few years ago and I don't see why that trend shouldn't continue.

I have made changes to my lifestyle to accommodate my heart condition, but I would say that all the changes are positive - I have a lot more focus on health and happiness than I did prior to diagnosis. I've prioritised what's important to me. Yes, I have symptoms that make some tasks difficult, but I feel like my life with heart failure is probably better overall than my life would have been without it, something I never thought I would hear myself saying!

I don't think there's any shortcut to coming to terms with a major health event, it's something your brain will take a long time to work through, but it is definitely possible to be genuinely positive and happy, maybe even more happy than you were before. Making yourself part of this online community is a great place to start and lets you see that your heart condition doesn't have to define you and that there is no such thing as a typical heart patient.

Hope some of the above ramble is useful to you... Feel free to message me any time. Good luck with the rehab when it comes around. I wasn't offered any rehab, but everyone who has done it seems to have found it hugely beneficial to their health and confidence. All the best

[tjwgc in reply to laura_dropstitch]

Hi, thanks you so much for sharing the above with me, I really appreciate it. xxx

I am now connected to a research and support group for my specific condition thanks to another member of this forum. This has given me access to a lot of useful information specific to SCAD (spontaneous coronary artery dissection) and I am now in contact with others who have been diagnosed/suffer with the same condition.

[laura_dropstitch Heart Star in reply to tjwgc]

That's great to hear, I'm sure it will prove really helpful to you. Well done to you for being so proactive so early on, sounds like you've overcome the first hurdle already

[JoanyB]

Hi tjwgc! Spontaneous Coronary Artery Dissection (SCAD for short) is pretty rare, and as you say they don't know what causes it or how to prevent it (yet! There is research on-going - more funding would be great please BHF!!). I've been unfortunate enough to have had 2 though both were minor and medically managed. Fortunately MOST patients only have one. It is really frustrating that we are healthy in all other ways and the only thing I can say is keep on with your healthy lifestyle so that if it SHOULD happen again you are in a good place to recover. Have you done Cardio Rehab? Although it is not geared particularly to us 'SCADsters' it does help build some confidence in your body.

This is the main site for the SCAD research - scad.lcbru.le.ac.uk/ - and you can find support groups etc under the 'Patients & Family' - Interesting Links' sections.

In all probability this was a one-off for you and the only thing you can do is try to put it out of your mind as much as you can and carry on with your life. Good luck!

(Sorry, I've rambled on a bit there!)

[tjwgc in reply to JoanyB]

Hi JoanyB. Thanks for your message.

I had two SCADs, one minor one before Xmas and then a major one New Years Eve. The major one had to be treated by fitting 3 stents as the tear was severe and couldn’t be treated medically. I haven’t yet started cardio rehab, my pre-assessment isn’t until 19th Feb.

Thanks for the link to the SCAD research page, I shall give that a swizz.

[JoanyB in reply to tjwgc]

Sorry to hear you had a bad one tjwgc, that must have been scary.

If you read all the info on that site, and the links, you will probably end up knowing more about SCAD than most GPs and a frightening number of cardiologists as well!

[tjwgc in reply to JoanyB]

Just looking at the website now JoanyB. I think I got lucky as the consultant who fitted my stents mentioned to me about a group in Leicester who were studying SCAD and having looked at his last letter to my GP I have noticed that he has given me the same website address!

[JoanyB in reply to tjwgc]

[Jasppip]

I've just had this a week ago and feel all the things you've said I'd love to know how your doing 5 months down the line

[tjwgc in reply to Jasppip]

Hi Jaspip

Have you been specifically diagnosed with SCAD (spontaneous coronary artery dissection)?

If you have there is a charity called BeatScad and a Facebook page that provide information and support to survivors and have helped me immensely.

I can say I’m a lot better than I was and that you probably recover quicker physically than you do mentally. I’ve had a phased return to work and have just gone to 5 days a week but on reduced hours as I was finding my original hours a bit too much. I can walk further distances now than in the early months and no longer fear the stairs. I don’t panic anymore at every little twinge and niggle in my chest and have just recently had the confidence to agree with hubby to book our summer holiday in Cyprus. I’m starting to try and consciously not let it stop me from doing stuff but within reason as I’m by no means back to normal.

Hope you are doing ok?

[Jasppip in reply to tjwgc]

Thank you for your reply yes I have been diagnosed with scad so I will look at the beatscad page. It's good that your back to work obviously it's worrying how much time is needed to get over these things. I to am finding it hard emotionally why me sort of thing. Do you have to take a lot of medication and have you had any further scans to see if tear has healed.

[tjwgc in reply to Jasppip]

You definitely should look at the BeatScad website beatscad.org.uk/ and also join the Facebook group for survivors. The Facebook group is brilliant as you can hear from people either further on in their recovery or very early on. You can ask any question or if you’re having a low day can post and you’ll hear from people that totally understand what you are going through. The University of Leicester is conducting research into this condition and there will be a link to sign up to the research on the BeatScad page. Don’t be frightened by how long it took me to return to work as everyone’s recovery rate is different so it might not take you as long, just make sure you,listen to your body and don’t be pushed into rushing back.

On the medications front I’m on aspirin, ticagrelor, atorvastatin, bisoprolol and was already taking losartan. Everybody will be different depending on the severity of the tear and whether they’ve had stents or surgery or not. Aftercare seems to vary from region to region and person to person. I pretty much got discharged in about March without having had any scans or follow up to see how the tear has healed! I have since asked my GP for a referral to one of the cardiologists heading up the research and she ordered MRI scans which I’ve had done but don’t know the results yet as I’m not due to see her until September.

[Jasppip in reply to tjwgc]

Thanks hopefully my aftercare will be better

[tjwgc in reply to Jasppip]

I’m sure it will be. I could have probably pushed more in the early days but it was such a lot to come to terms with and now I just want to put it behind me and move on.

[Jasppip]

I think that's a good attitude to have good luck with everything