Better diagnosis??

[SteveJesse]

Hi, after a minor heart attack on 27 Dec, I was told I had severe heart disease and needed a by pass operation which was carried out on Jan 2nd. I am 56, never smoked, drink very little, eat a healthy diet, have zero history of heart disease in my family and am / was extremely fit. In other wods, I tick none of the boxes of suggested possible causes for cardiovascular disease. The operation was a technichal success and I am recovering very well. I am interested in finding out if there is any recent or even ongoing research onto better diagnosis of heart disease which may help everyone and particulkarly people like me who would be the last person you would imagine may suffer a heart attack?

[laura_dropstitch Heart Star]

Hi Steve. I don't know about the research that's going on, but there have been a couple of similar threads on here recently, will see if I can dig out the links for you.

[SteveJesse in reply to laura_dropstitch]

Many thanks Laura

[laura_dropstitch Heart Star]

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

These recent posts are all written by people who don't fit the stereotypical image of heart patients, might be of interest to you. Maybe someone from BHF can give you a bit more info about research?

Hidden ? Jo_BHF ?

[Hidden in reply to laura_dropstitch]

Hi SteveJesse - sadly, you're part of a small group of people that suffers a heart attack and has no risk factors that we can currently find. There are various research projects ongoing into which genes affect our risk of heart disease and whether or not this is something we can target in the future, potentially with new drugs and treatments. At the moment, it's typically proved incredibly complicated and the more we find out the more research we realise we have to do.

Sorry it's not a simple answer - but we may discover in the coming years that some people have certain genetic profiles that predispose them to heart disease.

Chris

[SteveJesse in reply to Hidden]

Hi Chris. Thanks for the reply. I appreciate it is complicated and there can be no easy answer. Until someone develops some kind of drug which can attack and possibly flush out plaque build in the arteries, I guess we can only keep promoting hea!thy diet and lifestyle. Though I was fo!lowing such a regime and it did not help me, I remain convinced it is critically important to encourage people to do this not just for CVD. Do you / BHF know if there is any work being done on alternative tests which may help people spot issues early? My understanding is that an angiogram is the best and most accurate test they can run but I fully appreciate this is a technical and expensive procedure, therefore , not practical to be offered extensively.

[Hidden in reply to SteveJesse]

You're certainly right - an angiogram is our best way of screening for plaque build up in the arteries, but because it's an invasive procedure we'd only carry them out on people who meet certain risk criteria. At the moment I don't think there's anything that's being considered for people who are low risk/symptom free - but I definitely think that genetics is the area to watch. Eventually, it's entirely possible that everyone will have their genes analysed and all medications and treatments will be fully personalised to suit your genetic profile. We're a way off yet, but there have already been some drugs developed based on faulty genes we know can cause certain inherited conditions so progress is being made

[SteveJesse in reply to Hidden]

Thanks again Chris. Enjoying weekend. Steve

[SteveJesse]

Laura i have quickly read through some of the replies from shocked heart attack victims. I got over the ' why / how me? ' situation pretty quickly and am more interested in finding out more about the current situation on helping those of us who for seem to fit any of the traditional profiles detect heart disease before someone has to repair the damage with stents or a by pass. I was very lucky to be taken to Harefield once diagnosed and could not have been !liked after better. I imagine my surgeons are some of the best in the country and I quizzed them on this and I get the impression that they perhaps understandably don't know or care too much about what may have caused the problem, they are just focussed on fixing us. I am attending local Cardio Rehab and they are great, however, they too only list the well known possible causes and tell us we must fit one of !any of this profiles. I am sure there will be advances in the co i by years but wanted to know if there is any serious diagnostic research going on our there.

[BigT2013]

Hi there are some heart research projects but have to be selected I was selected by a local University Hospital after being referred by consultant.

Although it was mitral valve research

I was not typical and was asymptomatic so normally fine

[Joao_S]

Hi Steve, it has been 2 years since my HA (1 stent), plus another 3 stents (one 6 months after the HA and two more last year) and I have been asking the same questions? What and why are the exact causes of my CVD?

I’ve done all the usual lifestyle changes, took all the meds, done the cardio rehab classes (it has been offered every time after additional stents). I’m now off most of the medications (just aspirin and a low dose statin now), but I’m still trying to find the answers for what was the root causes of my heart attack and CVD?

I’m now considering getting a second opinion and do some of the blood tests privately which are not available on the NHS.

I was 51 when I had my HA, I was a few kilograms above my recommended BMI, I knew that my blood pressure was I bit high, stressful job, but I generally felt well and I had no warning symptoms prior to HA...

Joao

[SteveJesse in reply to Joao_S]

Hey Joao,

Thanks so much for your reply. I am glad you seem to have recovered well.

I am not sure where I am going or will end up with this. In an ideal world, maybe I can initiate some sort of research which may improve the early or earlier diagnosis of CVD for us all.

From the conversations i had with the fantastic staff at Harefield and the similarly impressive people at my local rehab group and from the limited private research I have been able to do this far, I get the impression that testing for and being able to achieve an early diagnosis of CVD is just in the too difficult pile. Therefore, we all are left with doctors going through the well known checklist of possible causes and hoping we tick some of those boxes.

I am not ranting at all about this and very much appreciate the NHS has very limited funds and I don't get understand the mechanics of raise my money for the funding of private research projects. I have a bit of time in the coming weeks before I need to get back to work so will see what I can learn. Unfortunately, I am not personally wealthy enough to donate any meaningful funds to kick start this, but I do have some friends who might.

If anyone reading has any insight they could share, please shout. In the meantime,without wishing to bore people or waste their time, I will share anything I learn.

I feel very lucky that I only had a minor HA which meant i had what seems to be the best way of identify CVD, name!y an angiogram. Though I would rather not have had a by pass, I think it gives me a chance of a good recovery short and long term. I feel if my good fortune gives me the chance to potentially help some others avoid surgery in the future that would be great.

Good luck and best wishes to you Now I and everyone else out there.

Steve

[SteveJesse in reply to SteveJesse]

Excuse typos, my editing was lazy. Joao, I did not mean to call you ' Now '

[Joao_S in reply to SteveJesse]

No worries and the typos...

[MichaelJH Heart Star]

I have Type I diabetes and often things are blamed on this. When I had cataracts treated everybody said it is because you have diabetes. The main medical professional who did not agree with this statement was the ophthalmologist who treated me. The feeling is that it is genetic as both my non-diabetic sister and uncle have been treated for them, as has a diabetic cousin who was only 40 at the time. Much the same comments when I was diagnosed with CVD. None of the usual precursors apply as non-smoker, BMI of 27, cholesterol before attains of 4.2, no BP. Again though there is a genetic link as every male on the male side of the family has developed CVD. There ids a blood test for a risk factor called Lipoprotein(a) (also called Lp(a) or LPA). It is a lipoprotein subclass. Genetic studies and numerous epidemiologic studies have identified Lp(a) as a risk factor for atherosclerotic diseases such as CVD. I have asked for this test but it dies not seem to be carried out by the NHS.