Hello, My journey is just beginning!

[Wayne1975]

Hello users. What a great forum. Im posting my first post as I know it will be helpful and theraputic to get my thoughts down in writing.

Im from Somerset in England, I have been married for 15 years to my wife who i have been with for 20, we have 2 children who are 12+8, I work long hours as a commercial refrigeration engineer.

My health problems started in September of this year. I had been feeling exhausted, got out of breath with minimal exertion and was experiencing mild chest pain. I also had sore neck and head and had some episodes of blurred peripheral vision. Although very concious of my symptoms I carried on every day life as best as possible.
One day after a physical job, whilst driving to my next job I felt very light headed, thought i was going to pass out and bizarely get a nosebleed. I pulled in and after 2 minutes felt better. I knew i had to stop ignoring symptoms so luckily less than 2 miles away was an A+E department and i checked myself in.
All my blood tests come back normal. Chest xray showed nothing. The doctor asked me if I was aware of a murmur which i said no. He said it was quite an excessive one. I had an ECG and confirmed I needed to see a cardiologist. I had to see my GP who referred me to a cardiologist. As i hadnt blacked out and had no chest pain or palpatations i was discharged.

I saw my cardiologist later that month. He listened to my heart through stethoscope and said i had multiple murmurs. I had a 12lead ECG and an echocardiogram. The below results mean very little to me and any help in better understanding would be greatly appreciated.

Gross LVH with strain pattern on 12 lead ECG
Moderate concentric LVH, mainly of septum, mitral valve SAM effect with turbelent flow in the region of LVOT, gradient detected 25-35mmHg, overall systollic function within normal limits,estimated EF >55% with moderate mitral reguragation.
Possible hypertrophic cardiomyopothy, referred for cardiac MRI scan and heart monitor
Pansystolic murmur in mitral region radiating to axilla. Systollic murmur in aortic region radiating to neck.
BP 128/84, pulse 93bpm.

I have had results from heart monitor which showed no dysrhythmia and reasuring data. I also had a treadmill test which I only completed 6.5 minutes before heart beat reached 179 and i stropped.
I have just had MRI scan and awaiting results.
There, i knew it would relax me putting it all down in writing. I know i am in the early stages of diagnosis, but am prepared, if i do need valve replacements or other surgery. My medical knowledge is basic so any help in knowing what to expect would be great.

 

[Paleowoman]

Hi Wayne,

Welcome to the forum from a fellow Brit - I live in the outskirts of London. I was born with bicuspid aortic valve, the murmur was first heard when I was 25, and had the valve replaced nearly two years ago when I was 60. I was always asymptomatic.

I'm often used as a patient in exams for doctors doing the MRCP Paces so I hear all those words like "pansystolic murmur" and "systolic murmur" ! Even post surgery I have a "pansystolic murmur" which radiates all over the pericardium and another loud murmur over the aortic region, though now these murmurs are just an indication of the flow through the replacement valve.

The echocardiogram you had should have showed if you have a bicuspid aortic valve or problem with your mitral valve. Did the cardiologist say anything about those valves ? "Possible hypertrophic cardiomyopathy" means thickening of the heart muscle which is why they have done an MRI. Have a look at this NHS article about hypertrophic cardiomyopathy: http://www.nhs.uk/conditions/cardiomyopathy/Pages/Introduction.aspx#hypertrophic and for a more detailed article here: https://en.wikipedia.org/wiki/Hypertrophic_cardiomyopathy

I think you need to see your cardiologist again before you know any more about whether it is hypertrophic cardiomyopathy or something else and what the treatment is. When is your follow up appontment ? Do keep us posted and do see your GP if you feel you are not getting anywhere fast enough with the cardiologist !

 

[Wayne1975]

Hi Paleogirl,

Thanks for the welcome from a fellow brit. Thanks for those links they make an interesting read.

For too long now iv not allowed myself enough time to take seriously my health and to digest and absorb important information. Its an area that you cant just find answers quickly. To find a quiet hour and absorb this information is quite difficult but absolutely necessary. Im still working full time and family life at home is "noisy"!

I wasnt told that i had a bicuspid valve and the meeting with cardiologist was vague, however it was the first one. I have another appointment in December.

At present im presuming iv either got leaking valves or the hypertrophic cardiomyopothy is causing leaking valves. The MRI will hopefully confirm if I have HCM.

Is my presumptions correct?

 

[Paleowoman]

I wasnt told that i had a bicuspid valve and the meeting with cardiologist was vague, however it was the first one. I have another appointment in December.

At present im presuming iv either got leaking valves or the hypertrophic cardiomyopothy is causing leaking valves. The MRI will hopefully confirm if I have HCM.

Is my presumptions correct?

I don't know anything much about HCM and no one else here seems to have responded, but I should think your presumption is correct and that you need to wait till you've seen the cardiologist again. I would write down some questions re the valves and HCM for the appointment.

If it were me I'd also hot foot to my GP to find out what he/she thinks.

If you're seeing the cardiologist on the NHS then you don't want to find, being Deember and Christmas that they postpone your appointment so you should keep on top of this. If you've got Bupa or something similar I'd see the cardiologist asap.

 

[Seaton]

Greetings Wayne.

Welcome to the forum. I’m a fellow UK-er too. And, like Paleogirl, from London.

I’m in the before part of before-and-after surgery, being monitored for ‘sooner rather than later’ valve replacement.

In February of this year I’d complained to my GP of persistent palpitations and fatigue. An echocardiogram discovered a bicuspid aortic valve.

I’ve had a recognized murmur since early childhood but no recognition until recently as to its cause (the bicuspid defect). After various tests it seems, due to valve stenosis, my estimated aortic (orifice) valve area size is 0.77 cm². Theoretically this puts my valve in the ‘serious’ condition category, with a need for close monitoring. I also have a mild aortic root aneurysm which currently seems of less practical concern to my cardiology team than the condition of my bicuspid valve.

This site is an oracle of wisdom and advice. A resource of tremendous value for anyone going through heart valve issues. Always good to know new people with such issues are finding their way here. Most questions asked get well-reasoned answers.

I look forward to reading your words (and the answers!) as things move on.