Shock email diagnosis last night

[Sljp0000]

Had an email telling me I have severe calcification in 3 vessels with an Agatston score of 958 last night. No real discussion from cardiac nurse or GP. Awaiting Angiogram 6-8 weeks wait. Scared stiff. Please can people tell me there experiences and findings? I feel like I'm going to have a HA anytime. Meant to be going on holiday on Monday too. I'm in a mess, how can I cope for 6-8 weeks not knowing what's happening?

[Sljp0000]

Thank you so much for your reply. My first post and reply! I did initially have a phone call but it was just to say I need an Angiogram for further investigation. The nurse said she didn't know the severity so that's why I was totally shocked to get it in writing a few hours later. The word SEVERE keeps haunting me.

We're meant to be going to Jersey. 45 min flight from Gatwick (thats complicated too buy that's a other story) But I don't think they do major heart surgery on the island but I don't know. Hubby said we should go and relax, it's not that easy! We would loose a lot of money if we don't go. I'm also just recovering from covid so feel crappy anyway.

So pleased your bypass went well. I guess this might be something I might have to face. How are you feeling now?

[Hidden]

If you are going on holiday on Monday and travelling out of the UK and have taken out travel insurance you need to talk to your insurance company and declare that you are now awaiting an angiogram. If you have a related medical incident on holiday and you have not informed your insurance company you may not be covered.

And I agree you should talk to your GP to find out more detail. Failing that the BHF Heart Helpine nurse.

[Sljp0000 in reply to Hidden]

Thank you. Jersey is in the UK but we've cancelled now anyway. Feeling sad. Will try and talk to the GP. Hopefully I can get thru at 8am tomorrow morning. X

[Blackcatsooty]

In my limited experience, the waiting is the worst bit.If you were deemed to be in urgent need of immediate treatment then they would haul you in.

My consultant rang me at my home the day after tests indicated my need was urgent. And it was a Saturday. There was in fact no available appointments and the consultant told me straight.

So perhaps you have some leeway.

How did I feel . Well I was so far gone that I really didn’t care.

The notion of going to the shops was way beyond my ability, so a holiday would have been laughable.

I found the hospital care just amazing. It was another world. Staff were fabulous.

I am sorry you have weeks to wait, but it’s worth it.

Best wishes

[Sljp0000 in reply to Blackcatsooty]

I guess you're right, they would have me if anything looked imminent. We've cancelled the holiday, just couldn't face it. I'm glad you're sorted now, how are you feeling?

[Blackcatsooty in reply to Sljp0000]

I am feeling pretty awful. I have endless fatigue and loss of strength in muscles. But this is probably a result of a stroke that struck me down about seven years ago. What I can say is that, about15 weeks after the open heart surgery, I felt wonderful. Free from fatigue and brain beginning to work. Sadly this lasted just a few short weeks then the fatigue returned. I never got any rehab after the heart op. Every hospital facility was closed. So please learn from my loss and make sure you get given rehab.

[Sljp0000 in reply to Blackcatsooty]

Oh I'm so sorry, can't you insist on some rehab now? You've been through all that too. If I do have to have bypass I'll definitely remember your advice. Thank you.

[MaggieSylvie in reply to Sljp0000]

I think it's a disgrace that they sent you the diagnosis by EMAIL! How do they think that will affect a patient? I'm sorry you had to cancel your plans and let's hope there isn't a good reason for that. Unbelievable!

[Sljp0000 in reply to MaggieSylvie]

I know right? The shock when I opened it was immeasurable! Thank you for your care x

[Chappychap]

Couple of points to think about.

The correlation between calcification of the arteries and heart attacks is no where near as high as you'd think. Over half of heart attacks occur in people with less than 50% arterial blockage, to put that in context it's actually quite difficult to even spot blockages below 50%.

Conversely there are many people on this forum with arterial blockage of well over 90%, but who have never had a heart attack. I'm one of them, sounds like you may be another.

How is this possible?

It's because of the underlying nature of our cardio vascular disease or atherosclosis (often just called "heart disease"). Think of heart disease as like acne in our arteries. Some spots are full of puss and can easily burst, these are the type of spots that cause heart attacks. But other spots are stable, with more solid contents that won't burst even if squeezed. These more solid spots can grow very large and cause serious angina, but they're extremely unlikely to burst and cause a heart attack.

The second point is that Agatston scores are notoriously variable. I guess you've googled your score and read that 958 is high, but in reality a different scan operator or a different machine might give a totally different result. It's more about expert interpretation by experienced and skilled practitioners than a simple reading of an absolute score.

There's no reason to be anxious that you're at severe and imminent risk of a heart attack, which is why your doctor appears so chilled and there aren't flashing blue lights outside your front door!

If you have angina you need to be focussed on the difference between stable and unstable angina, which is a clear warning sign, and by all means seek some more explanation from your GP. But try not to worry yourself unduly. A heart diagnosis is never welcome news, but I'm sure you'll still be around to have your angio in a couple of months time, and that's the test that will deliver the gold standard diagnostic results.

Good luck for your angio!

[Sljp0000 in reply to Chappychap]

Wow, thank you for such a detailed reply. You definitely seem to know your stuff, I very much appreciate taking the time to reply to me.

I really get what you're saying re the stability of the plaque. Thank you for such a great explanation.

I will try ro be calm. Recently I've started noticing little bits of dull pain when resting and in my left arm. BUT I'm such an anxious person that I don't know whether it's psychosomatic or not. It's very sporadic and usually momentarily.

Thank you again, I wish you luck with your health journey x

[Handel in reply to Chappychap]

Well said. Hope your are keeping well. All the best. Jan xxxx

[Jako999]

I had a long wait for the angiogram but all the time I waited for it I never really worried I don’t know why it’s around £2000 if you want a private one even when I went in for the angio I kept thinking it will be fine a few meds or at the worst may be a stent but then bang “ your lucky to be alive, your not going home you need an urgent quadruple bypass, I’m surprised the shock didn’t kill me im 55 health and supper fit. I ended up on intensive coronary care I just kept thinking it must be wrong. I had the op 2 1/2 weeks ago big op but went ok with an excellent surgeon and things are going ok with my body but my mind is all over the place. I’m a strong person and I’ve never felt like I do now I just burst into tears, what if? Why am I alive? Am I still going to died. Like you we had just been on holiday to Florida for a month all that walking around parks and all those rides the hospital staff were amazed I’d made it back and not in a box. I think people see the physical side which is hard but no one sees the mental side trust me you are not alone I’m happy to talk any time but I can guarantee it will be a two way thing with lots of tears ( who says men don’t cry I’ve never felt like this) it’s all in our heads I’d we hadn’t have been told how I’ll we were we would have gone on as normal till the op was over xx

[Sljp0000 in reply to Jako999]

Oh my goodness you've been through so much. I'm not surprised you're feeling emotional, you have every right to be. I think you underestimate what a shock you've had and that's a physical and mental reaction. Your life changed completely at the flick of a switch.

Can I ask what symptons you had to start with which led you to receiving the Angiogram in the first place?

I think I'm still in shock that there's actually something wrong with me. Now I'm feeling all sorts of pains thinking something dreadful is going to happen. I need to calm down!

[Handel]

Welcome to the forum.I can only relate what happened to my husband (who always refused to go to the doctors!).

In April 2018, we were at our son's house in the Peak District. My hubby had problems with walking any distance as he got out of breath and had chest pain. When he stopped and rested, everything got better - so angina!!!

I tried for a few years to get him to the doctors but it was our son (bless him) who made an appointment with BUPA for hubby to see a consultant.

That was early May 2018. The tests were extensive and the consultant gave us a letter to take to our GP. Things started moving slowly after that.

Looking at the notes I kept!! - he had an angiogram at the end of June ( 7 weeks after the BUPA consultation). The only plus point I guess was he was prescribed GTN.

He was told he needed a triple bypass as arteries were clogged. I panicked thinking he might have a heart attack but I was told he wasn't at risk but needed the operation.

We went to Suffolk in July as we were told nothing would be happening for several weeks.

While we were in Suffolk on a family holiday, the hospital called and said they'd had a cancellation and could hubby visit the next day for a stress test. We said we couldn't make that as we were on holiday. The lovely cardio nurse said "the holiday will probably do him better than coming here for a stress test"!

Long story short, he had his op in 2018 and has never looked back. The surgeon said "I'll sort out another bit of dodgy pipework while I'm in there" so hubby ended up with a quad bypass.

I don't think blockages are a precursor to a heart attack at all. That's what we were told anyway.

Try not to stress out too much. You'll get sorted out soon.

This forum is a wonderful place with lots of people who have gone through what you're going through.

I joined up in 2018 and asked so many questions that these lovely people helped us with.

Lots of love. Jan xxx

[Sljp0000 in reply to Handel]

Oh I'm so pleased your husband is sorted now. How often does he have a check up? I can't imagine going through open heart surgery but I guess I might not have any choice. I only get pain (mainly in my throat) when I'm going up a hill or swimming in cold water.Well done for pushing him and supporting him so well. This is just as hard for other halves!

[Handel in reply to Sljp0000]

Thanks for your lovely reply. You're certainly right about it being bad for our other halves. I was a complete wreck but only inwardly!! I had to become very matter of fact on the outside.My hubby had a check up after 12 weeks at the hospital where he had the operation (100 mile round trip!) and that was it really. He was passed back to our GP then and together the GP and cardio unit got together and started to cut the drugs he was on.

He's just on 80mg Atorvastatin, 75mg aspirin and 1.25 Bisoprolol and has been for 3 years now.

He needs a meds review at the doctors but try getting him there!!!!!

The surgeon told us that he could do the bypass with his eyes shut and one arm tied behind him back but said "well, you'll be asleep so you'll never know!".

As for making sure he was OK once he had the bypass diagnosis, he was given Clopidogrel to take (stops blood getting too sticky I think) and statins. GTN was useful but he only used the spray 2 or 3 times if he got pain or out of breath. Apart from that, nobody bothered to check on him but if there had have been problems, I'd have called 999.

He doesn't need GTN now but it's on repeat prescription just in case.

You'll get there!! Lots of love. Jan xxx

[CyclingTime]

After my CT it was supposed to be two weeks before I heard anything, instead they called me the next day and told me to go straight to hospital where they had a bed ready!

So take heart you haven't been pulled straight in. Rest, no energetic or stressful time until you have a clear picture

[Sljp0000 in reply to CyclingTime]

Good advice, thank you. I will try but I'm such an anxious person it's hard!What did you end up having? Are you recovered now?

[CyclingTime in reply to Sljp0000]

I had a quadruple bypass in the end at the end of January. All recovered now pretty much. After 6 weeks I was averaging walking 35m a week and once I was allowed to cycle again in May I have built that back up gradually doing 100m last week with the longest 35m

All with no issues, so potential happy days ahead ☺️

[Sljp0000 in reply to CyclingTime]

WOW! That's an amazing achievement, well done you!

[pasigal]

In my case, the waiting was awful. And yes, to be honest confirmed my worst fears as got stented up. But, please let me give you some hope. My brother -- who has the same genetic Lipoprotein A excess as I do -- had a very high calcification score. But an MRI showed that he did not actually have more than 50% blockage in any artery. Whereas I was at 90% LAD and excess of 70% in 2 others...

That said, I know it sounds like a death sentence, but modern medicine is amazing as is the body's capacity to heal. And after suffering cardiac arrest and a heart attack "in the field" later on (after the first 2 stents...), I can say that any preventative measures (stents, bypass, medication) are vastly preferable.

[Raylpa in reply to pasigal]

Hi pasigal hope the sun is shining for you today. I noted your comments on having high lipoprotein (a) me too. I am amazed, even on this highly informed, how little ‘airtime’ it gets. I had to fight really hard to get the blood test, my GP had never heard of it despite it being a likely contributor to around 25% of all CHD. I have recently been diagnosed with aortic valve calcification and the cardiologist says the high lipoprotein (a) is the most likely cause. Let’s hope the new gene based drugs for high cholesterol which also reduce lipoprotein (a) are available to ‘us’ soon. Do you know of any groups for the lipoprotein (a) topic.

[Sljp0000 in reply to pasigal]

Thank you for the information, that's really helpful. Did you brother have stents with 50% blockage? Hope you are fully treated and recovered now?

[pasigal in reply to Sljp0000]

no, thankfully he did not need stents. He is on high doses of statins.

[ETHEL103]

I think you did the right thing about the holiday.How could you enjoy it knowing you might be ill whilst away.Your mor important than a holiday and maybe you can relax in your garden .

[Sljp0000 in reply to ETHEL103]

Yes you're right. Even my hubby agrees with me now. Luckily the hotel have rearrange our holiday for next year so we've only lost money on the flights. X