British Heart Foundation

Total Coronary Occlusion

I went to my GP with chest pain that I had been suffering from for a few months. The pain was on the right side of my chest and apart from one incident where it REALLY hurt, mostly it started in both sides of my jaw, then spread to both armpits and finally felt like I had just smoked too much. It would come on when I was walking and if I stopped and took deep breaths it would ease up.

The delay in going to the GP was because I was travelling all over the world. At one point I had Pneumonia and had been on antibiotics for that so I thought it was a hangover from that. I saw a chemist in the Middle East who gave me GTN. I used it and it worked.

Fast forward to the GP... They did an ECG, saw some abnormalities and referred me to a Chest Pain Clinic. I went to the chest pain clinic expecting a couple of hours of tests. They did one ECG, rushed me to A&E and I got admitted for 8 days. In that time they put me on lots of different drugs, did an Echocardiogram which was clear, tested me for every travellers disease/illness you can think of and finally did an Angiogram. The Angiogram showed a Total Coronary Occlusion of the right coronary artery. They were looking to do a PCI CTO there and then but stopped because it would take too long.

I've been told that I am now an elective patient rather than an emergency. I was given times of 1 week to 5 weeks of when I can expect the CTO but I have no real date which is a little stressful in itself as I cant plan my life at the moment as my work involves travel and I am self employed. I've been out of hospital for just over a week so this could just be me being impatient and I'm not the kind of person who ever visits doctors or hospitals. I'm a little inexperienced with the NHS.

I guess part of this is just me needing to talk because at 49 this was very unexpected. I'm on a pile of drugs which for someone who took no regular drugs I'm finding difficult. Medications are now:

Nitrolingual Pump Spray Glyceryl Trinitrate; Lansoprazole 30mg; Clopidogrel 75mg; Bisoprolol 5mg; Amlodipine 5mg; Aspirin 75mg; Atorvastatin 80mg

How did you deal with what happened to you?

Has anyone had a PCI TCO? I'm led to believe that it's a bit of a longer Angiogram/Angioplasty and that's it and that basically its the new CABG. Can anyone tell me any different?

KC

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Hi Ozigal

Sorry to hear about your recent diagnosis.

You're right, a CTO is a total occlusion and can take longer than a normal PCI, as they have to try to get a guide wire through the occlusion in order to get a stent in. Sometimes CTO's require slightly different equipment so it is important that they have enough time allocated in order to complete the procedure.

Your medications are all prescribed in order to reduce the work of your heart, which is important in coronary artery disease. It's difficult to plan life and work ahead, but keep in contact with your cardiologist's secretary or admissions team who may be able to give you an indication as to when your procedure will be.

In the meantime (if they are applicable to you) it may be a good idea to think about taking steps to quitting smoking, and eating healthier as it will benefit you in recovery and in the future. Please visit our website bhf.org.uk for advice on either of these.

Best of luck!

Ashleigh

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Hi Ashleigh,

Many thanks for your response.

Luckily I gave up smoking 5 years ago and I do tend to eat reasonably healthily food although it can be a challenge when I'm traveling and there are times when meals are totally unhealthy as there isn't an option.

Are the risks for a CTO greater that the risks for normal Angioplasty? If so, are you aware of what these are?

I've been on the BHF website and have ordered a few publications.

KC

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Hi Ozigal

To discuss the risks for your procedure it is best to talk to your cardiologist, as your risks will be different to someone else's. They are also the best person to discuss CTO vs normal angioplasty, as they will perform both procedures so are best placed to answer your questions.

Good to hear you gave up smoking! Best of luck.

Ashleigh

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Your description is so like my own story its a bit scary. I had a triple CABG but never had any pain on my left hand side. I could do most things and occasionally I'd get pain (a lot of pain) behind my right shoulder blade. If I stopped and rested for a few minutes the pain would go away and could carryon usually with no recurrence of the pain. I put off investigation because I was travelling a lot! Eventually I was diagnosed with severe stable angina and was admitted straight from my angiogram with op 8 days later.

The drugs you are are a fairly standard cocktail for starters and will likely change as your condition is managed. Note that it is not unusual for you to have some issues with the drugs (breathlessness, tiredness, insomnia etc.), if you do get any of these go and see the GP and see if you can change the cocktail.

You might want to have a look at the following - it might help reassure you!

ncbi.nlm.nih.gov/pubmed/164...

Keep in touch through this site as you go through the journey. It really can help to ease your mind

Steve

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Hi Steve,

Our stories do sound similar. Have you managed to get back to traveling? Getting my life back to normal is worrying me.

One of the Cardiologists I saw gave me advice about changing the drugs around and I've been doing as he said. eg the Bisoprolol gave me a bad stomach, made me dizzy etc so we cut it back and I'm slowly increasing it as per his advice.

I'm terrible at listening to doctors. I grew up in a 3rd world country where we had no doctors so I'm very used to dealing with issues and self medicating although I have to admit, these medications are a little out of my comfort zone!

Ideally I'd like to get off the drugs all together. I'm not sure if that's going to be a possibility in the long term but that's what I'd like.

KC

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As mentioned a PCI CTO takes longer and is more complex than a usual PCI (stent). Because of this you will normally be kept in overnight for monitoring afterwards.

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Thanks Michael,

What about afterwards? How soon will I be able to go back to a normal life? Do I need to take it easy for a while?

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I had angioplasty to the left leg and was left with quite a bruise. The usual recommendation is to take it easy for a week (no heavy lifting or driving) but you will guided by the team. As it is a TCO you may need slightly longer to recover. If your traveling takes in overseas you may have trouble getting travel insurance for six - twelve weeks afterwards.

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Hi KC

I had a business trip to China 3 months post op. Direct flight, hotel living and out to dinner every night and I was fine, no problems.

On the medication front, I think you might need to get used to the idea of travelling with your own personal pharmacy. Short of rebelling and making a unilateral decision to ditch the meds, I haven’t seen anyone on here cheering that they don’t have to awake any more medication.

Steve

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Hi Steve,

I wouldn't stupidly go cold turkey on the medications but I when the time comes I will certainly be looking at how I can cut down on everything and eventually (if possible) get off as many as possible.

In the coming months I have a fair amount of travel to do around Africa. I'm hoping this wont be impacted.

KC

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80mg Atorvastatin is high dose Statin which will hopefully be reduced as your lipids profile steadies, but as you will likely be taking them for the foreseeable future I suggest you also consider taking a supplement of Coenzyme Q10 or Ubiquinol.

Statins can reduce this enzyme which among other things is essential for heart health, it can also help offset some of the side effects of taking Statins, muscle pain etc.

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Hi Tunybgur - what are Coenzyme Q10 or Ubiquinol? I want to take less, not more :)

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Just Google it, there's stacks of stuff about it....then decide if it's for you.

I'm 70 and have been on 40mg Atorvastatin for 5 years (following a heart attack).

I take 100mg of Ubiquinol every day and have never suffered any Statin side effects.

Good luck

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I have never taken CoQ10 or Ubiquinal and I don't suffer any statin side effects either. The jury is still out on these (CoQ10 and Ubiquinol) - some promising/good results and some not so good results. There is a concern about interactions with beta blockers too, which would be an issue for many cardiac patients. There are a lot of Google links out there and many are from 'natural health' companies trying to sell stuff, which always sets my alarm bells ringing. Having said this the attached link is at least balanced and medically reviewed.

healthline.com/health/coq10...

I think the closing advice in this article is on the money. Generally CoQ10 is well tolerated but check with your GP before you start taking it.

In the mean time, I'm going to do some more digging. Anything that might help my recovery is always going to be worth a look see

Steve

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Agree with everything you say, nothing is proven apart from the fact that Statins do reduce the bodies production of CoQ10, and this enzyme is an essential part of mitochondrial respiration (working of the cells).

Production of CoQ10 is also reduced as you get older (I'm 70 but very fit, is 70 old?) so I take a supplement, in tests it hasn't shown any toxicity, but of course it's very difficult to prove a negative,.....can't do any harm though.

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If it’s not too personal a question, what other meds are you on (if any). I’m on 80mg Atorvastatin now and I take a beta blocker and an ACE inhibitor as well. I’m weighing up some risks!

Cheers

Steve

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Long list:

Ramipril 7.5mg for BP - now about 110/65 with resting pulse of 45.

Amlodipine 50mg for BP.

Bisoprolol 1,25mg for tachycardia, started 3 months after HA.

Flecainide for Atrial fibrillation, started 18 months ago, under control now.

Atorvastatin 40mg for cholesterol, now about 3.8 mmol/l.

Many of my problems started after my HA (5 years ago), with heart rhythm issues probably due to scar tissue forming on the damaged heart muscle.

My ticker's in pretty good shape now (55-60% ejection fraction which is about normal) and I go to the gym twice a week, cycle, jog, play golf and generally carry on a normal life, but I'm sure without the meds I would be in trouble.

I have spent some time adjusting the levels of these drugs with the cardiologists because some of them can rob you of energy and your quality of life suffers, e.g. I was put on Sotalol for Afib and it left me completely bereft of energy, changed to Flecainide and all problems solved and bags of energy!

Hope this is useful to you,

Every day's a bonus

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Hi Ozigal, I’m on the same meds as you,plus a few more! As mentioned here before,these are pretty standard. I had a total occlusion of the left main stem. This was only discovered by accident while having another stent fitted. Not that many years ago this would have meant CABG. The procedure is a bit more tricky,and does take longer. I can identify with what you’re feeling right now. I remember feeling totally overwhelmed by the whole thing. I eventually began to realise how lucky I was that this was discovered an dealt with. I wish you well.💜

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Thanks Bee... I'm resigned to the fact that it has to happen. I mostly just want to know when and I've not got any answers as yet. I also dont like being tied to medications.

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I know what you mean re being tied to meds. It takes a while to get used to them. Hopefully you’ll get sorted soon, and get on with your travels! Please do keep us informed.💜

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Hi Ozigal

PCI of a TCO is about double the Risk of a stent i.e. 2% rather 1% that's what my Cardiologist said for my particular blockage also in the RCA. They have now decided not to attempt opening my RCA as the part of the Heart it is supplying is already dead muscle (Cardiologists words ) I had an MI in 1982 which was caused by the Occlusion of the RCA and I worked until 2004 when I retired . I have worked in Yemen, Algeria ,Libya, USA, China to name a few. These are not fly in fly out jobs, they are months or years

So if you can show your well, work should be O K. Currently I am waiting for a procedure to open my LAD which has had a by-pass CABG but needs further work !!! Waiting time is 4 to 5 weeks, but the planning has taken a while, needed an Stress MRI so from November to March in the planning phase.

Wish you well in your journey

Frank W

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Thanks Frank.

I was in Libya in back in November. Flew into Tripoli and even managed to get out to Leptis Magna for a day. Heading west from Tripoli towards Yanzour was only cleared of ISIS a few months ago and there is much damage. In saying that East towards Leptis Magna is in good shape... but I digress...

I was told that I hadn't had a heart attack (or at least the Troponin test came back low) but I think if I had of had a heart attack it was back in September as I had the worst chest pain then. From what I know of Troponin it only really shows up to about a month afterwards. They are saying that the artery has been blocked for >3months though.

I got as far as being on the table in the Cath Lab in the middle of an angiogram. They saw the blockage, got the stents etc out of the storage area and were about to start working on it when they decided it would take too long and called it off.

Good luck with your procedure

KC

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Some of the medications post stent you will come off in about a year e.g. the clopidogrel. But it's important to remember that the stent only deals with a single blockage - it still leaves you with coronary artery disease. To prevent any further blockages in the other coronary arteries requires both lifestyle changes and medication , much of which is very long term, though they can be adjusted if you have problematic side- effects. I went from no medications to a handful and I appreciate it's a difficult psychological adjustment, but it's important to recognise these drugs protect your heart.

It's hard to come to terms with the fact that you need to prioritise your health, but to be honest if you are going to be travelling over Africa it would be wise to carry on taking the drugs, as it's not the best place to have a heart attack!

How wonderful to see Leptis Magna!

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