As you'll know from my previous posts, I was discovered to have a large hole in my heart at the end of last year. I've had a tonne of tests to assess it and I have now been referred for surgical closure (OHS) in London which should hopefully happen in the coming months - speeding that up after a small blood clot passed through the hole last Friday leading to a blockage in a lower right coronary artery. Thank you ASD for enabling a heart attack!
However, it seems I also now have a second heart issue to manage. A CTCA picked up moderate stenosis on my coronary arteries, notably my LAD which is 25-49% blocked. This also showed up on the emergency coronary angiogram while I was on the Heart Attack pathway last week (finally combed through my discharge notes with Google to disambiguate the medical jargon).
I'm 38 and pretty fit (was running 5km each weekend, commuting 20km a day by bike), don't drink alcohol much/often, diet is not unhealthy. The doctor I spoke to said the stenosis was linked to genetic traits (dad had high cholesterol at my age) and has put me on statins.
My concern now is that presumably once my ASD is fixed I won't be getting reviews of how that arterial disease is developing. The doctor said most people won't know they have blockages until they present with angina or a heart attack. But as it's the LAD, a blockage is a severe problem as it supplies oxygenated blood to over 50% of your heart muscle. Called a widowmaker heart attack for a reason...
I know there's nothing they can do to treat it until it's blocked but that feels a bit like leaving it until it's too late! And if it's 50% blocked before the age of 40, I find myself wondering what mileage I can expect before that particular 'part' fails on me 🙃
Also so gutted to be going through OHS once to treat issue 1 but know that issue 2 will continue to loom over me and maybe necessitate another intervention later on. These heart concerns are like busses! Nothing for 38 years, and then....
What wisdom and experiences can you share with me?
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LadyZ13
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I had a hole in my heart closed a few years ago .I had a TIA out of the blue and it was thought to be due to a small embolism.Luckily I was able to have the hole closed by catheter intervention and not Open Heart S. My heart is not in very good nick and I am pretty ancient but I hope they do it for you soon.Pity they cannot do everything while you are having the Hole fixed.
Thanks 10gingercats, I remember parts of your story and how it reassured me that someone else had discovered a hole later in life.
I spoke to the surgeon on Thursday (he called me from what sounded like a cleaning cupboard!) and he said he might put a couple of stitches in my floppy valves while he's in there as the dilation caused by the hole has pulled them out of shape - but I guess the only intervention for the arterial disease is stenting/bypass and the disease isn't advanced enough to justify it yet.
Hope you're doing OK despite the cardiac concerns.
Thank you so much Hidden , you've gone a long way to offering me reassurance. And having had an angiogram already (with the bruises to prove it!) I have an idea about what putting a stent in might involve. As you say, hopefully it'll be many years before I get to that point.
I didn't think it could be reduced or even 'stopped' especially but only slowed down. Is there any evidence that reversal is possible?
My LDL now is 2.68 and overall cholesterol was taken at 6.1 just after Christmas and 4.6 on the bloods taken in hospital last weekend. That was before I started the statins.
I hope to think mostly good diet is good enough. We have red meat maybe once a week but many days are totally plant based. We have neighbours for dinner tonight and I'm doing a venison, lentil and vegetable 'shepherds' pie (deerstalker pie??).
I'm just hoping it doesn't take a heart attack to prompt intervention, especially as it could be a Big One. I hope to recover well from last weekend's HA and the upcoming trip to London for my heart remodelling (new wall, maybe a nip and tuck to the floppy valves) but the thought of going through this again in 20-30 years is not welcome! But then, nothing's guaranteed, right?!
Well done on another Park Run and pull ups! I'd normally be at the gym this morning and I miss the crew. 10 days until I see Cardiac Rehab for recovery from Episode One, attack of the heart, then back for Episode Two, septum restoration... Walked 7k steps yesterday (with a sit down halfway)... You can't keep us down!
Let's say twenty years from now you get moderate chest discomfort upon exercise. Symptoms are that you stop exercise and the discomfort goes.
This would be pretty normal for a sixty year old man.Most people probably have this and have no idea, especially if they never exercise.I think you are saying you want to avoid this, or more the worry of it.The percentage you mentioned i don't think is enough to give discomfort unless it progress's and that happens over decades.
A plant based diet and avoiding processed foods can (controversial) reverse this.Exercise helps, but you are looking at moderation- not marathons, and running slower paces.
Try not to become a diabetic or pre diabetic.Try not to develop hypothyroidism (i did).Take vitamins to address mineral deficiency as you age.
The one bit of good news is, as the LAD occludes you build natural collaterals that bypass and go around it . A healthy BMI helps with this too.
Thank you so much! This is really interesting and makes me more hopeful still.
I'm currently on 80mg of daily atorvastatin, taken with my evening intake of drugs. No idea if it's causing side effects as everything's up the creek with the HA, being taken off the pill but there's a bit of a headache...
My dad (whose higher cholesterol was picked up when he was a couple of years older than I am now) was on 40mg and is now on 20mg so thinks my 80mg is wild, but he forgets his is now low, so I guess this is a maintenance level of statin whereas I need a quick climb down.
Thank you so much for sharing this. It gives me a lot more confidence. I'm having a u&e check after a week on this new cocktail of drugs and then a review at 12 weeks but I expect to have had my surgery by then which hopefully will include a check of bloods. I'll be keeping a very close eye on the lipids profile now I understand what it means.
Thanks again and all the best with managing this disease.
I always think about you and wonder how you are getting on, and boy you are definitely receiving all your buses all at once. I don't know how you must be feeling but I know that iam angry with myself and feel that he God's are not looking down at us with care. However all I can say is that you are now being looked after and you do have control over diet and light exercise. But as we have said many times it's the mental side that takes the hit.
Thanks Hidden - here's hoping I am indeed getting all the heavy stuff in one six month rollercoaster and then no more aggro for many years!
That said, I do feel that I am in very good hands and I feel enormously fortunate to have one of the country's best heart units 10 minutes from my house plus the option to use our BUPA cover to get things moving quickly. Looking forward to being able to exercise properly again - a week from the HA I am still banned from gym and bike and a run feels a very long way off...
There's no rhyme or reason in any of it. Sometimes we could have done something differently but mostly it's just (often genetic) luck. We didn't ask for any of this, but can only control how we respond. I'm writing loads and loads and surrounding myself with friends, asking for all the help! It's scary, of course it is, but we're none of us alone - as this little group bears out on a daily basis.
Hope you're doing OK.
Not doing too bad. Still mentally struggling. My cardiologist does not want to see me for a year. And had another ecg, echo and full bloods. Nothing to report back. And my cardiologist seemed happy with me. Said I looked well and the only thing she wants me to do in a few months is a cpet test on the bike. But she wants some effort. So been trying to practice down the gym. 10 minutes and got up to level 12. I hope level 12 is 200 watts?. I do other things down the gym but am I pushing too hard? I did do a boo boo, I took ibuprofen for head ache and caused blood pressure to go up. So got rid of all my ibuprofen . You are right though I did not ask for this, like you did not ask for yours. You have to put your faith in the experts, but like I said to my therapist I do like to be in control of my life and try to control it. But it's a bit like being driven by someone else in a car I don't like it I would much prefer to drive myself and be in control? But I don't have control of this, yes I can eat more healthy, try more exercise. But I carnt control the future. Non of us can but this issue that we where born with has put a spanner into the works. It is scary. I was shocked to read you had a heart attack. My cardiologist did say that before I was seen last year I was a ticking time bomb. That's when it hits you.
On the face of it, this all seems pretty positive but I totally understand that sometimes this doesn't address the fear and nagging anxiety that things are not as they should be.
The lack of control is difficult too. This huge thing comes out of nowhere and you can't fix it or manage it by yourself. It's a combination of your mortality and the fear of the unknown that makes it difficult. But, unless we sail through life without any troubles and die suddenly in our sleep, there will always be things we cannot control and I think, for me, this is helping me to build resilience amidst uncertainty but it's never going to be easy. That not knowing and not controlling becomes normal after a while...
Keep talking to everyone - family, doctors, therapist! I'm sure it helps give shape to the swirling waters in your brain. I'm lucky to have a job I enjoy as a distraction from my troubles too.
Keep on keeping on, friend. We'll persist - not like there's much of a choice!
When I had a heart attack 4 years ago two stents were fitted in teh affected artery. I then had to go back for another angiogram to check the LAD which was found to be 64% blocked but not quite bad enough for stents and since blood was flowing well and I had no symptoms the blockages were left. I don't see a cardiologist or have any check ups. I've now started to get breathless so my GP sent me for an echo and had a holter monitor for 24 hours neither of which showed any problems. I'm now having another ECG. I take only a statin and an aspirin and watch my diet. They are not concerned about the blockages. YOu can prevent yours from getting worse by removing t hose lifestyle t hings that have caused it. Get advice from your G P
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