Finally some answers!

Thank you for the update

by Gemita - 2023-06-09 05:40:45

Dear Hayden, I am relieved you have at least been given an answer which proves how important it is to follow up on these questions.  We need to know what is happening and not to be kept in the dark.  Now I need to write a letter to my own EP about my echocardiogram results asking about the significance of two findings that have not been fully explained.

I guess my question now to you would be, are any of your ongoing symptoms coming from this condition or are they totally unrelated and related to your recent blood test abnormalities, including anaemia?   I note your heart function is well preserved so that is reassuring although clearly the dilated LV and aorta need to be closely watched.  I would want to know the degree of dilation and whether it is significant for someone of your age and heart condition to have, although your doctors appear to be saying this is the case;  it is to be expected.  I think you have a dual chamber pacemaker (from having had single lead pacing for years).  You could ask the question about needing an upgrade to CRT at some stage, or whether "watchful waiting/observation" is all that is needed for you to remain well?   Heart dilatation can be common in those whose hearts work hard for long periods (for example athletes), so on its own, it may not be significant, although seen with ventricular wall thickness it would be more worrying.

Whatever you do, please do not worry about this because fear, stress will not help.  You have every chance to recover well if you take care of yourself and good luck with the exams Hayden.

Thank you Gemita

by PacerPrice - 2023-06-09 06:18:12

Thank you so much for your reply,

I am in an extremely strange and confusing situation now. As my new adult team have constantly told me my heart is structurally and functionally normal, and there's nothing really of concern at all. But now this has been brought to light, which seems to be quite the opposite. 

I really feel like I don't know what to do as I've gone from thinking my heart is structurally fine to being told there is dilation in 2 areas. 
 

I have asked my adult team what the dangers of this is and if it could potentially be the cause of my 6 months of symptoms. The gosh team said that the function was well preserved which is good, but said it was good that I was aware of the potential dangerous arrythmia, and this is being monitored. 

I will keep you updated,

Thank you,

Hayden

Dilated heart isn't necessarily an issue

by crustyg - 2023-06-09 06:31:21

An enlarged heart is quite common in athletes.  I'm no cycling pro-racer but I have an enlarged heart (easily seen on CXR), and it's very obvious when lying on my L side, as the heart falls forwards and thumps against the inside of my chest.

OK, so I'm using enlarged as a synonym for dilated, which isn't strictly correct.  In my simple world a dilated heart is bigger than it should be, with thin walls.  An enlarged heart is also oversized, but with corresponding increase in vent-wall thickness - so the heart muscle thicknes to ventricular size ratio stays the same => normal.

I think you have a choice here: you dive down the rabbit hole of trying to get your heart advisers to be sure if they are telling you that you have a dilated heart or an enlarged heart.

OR you give thanks that you're alive and able to exercise, study for exams, have fun  and enjoy yourself.

It's that old CBT again: you have to choose.  To some extent or another we all have to choose what to focus on.  Turns out that Life is all about Choices.

I agree, choose to focus on things that bring you happiness

by Gemita - 2023-06-09 07:31:27

Hayden, crustyg makes a good point and I need to remember that too:  we all have to choose what to focus on in life.  We can focus on things that cause anxiety, or on things in life that bring happiness, so it is very much about choices.  I understand completely though that without “symptoms” you wouldn’t even be posting, so any unusual or new symptoms that you develop in the future should always be reported to your doctors.  I am sure your new team will watch you closely and keep you safe from any potentially dangerous arrhythmia.  

So should we start by focusing on "our heart function is well preserved" and tell ourselves that it will remain that way?  

You make a brilliant point

by PacerPrice - 2023-06-09 07:41:51

Thank you so much for those comments, it has really made me feel a lot better. 

I will definitely try to focus on the good function. and make choices to focus on what i enjoy and makes me happy. 

It is just quite frightening to have this thought in my head that as a 19 year old boy i have a potentially dangerous issue in my heart, and after so much anxiety i've googled everything and know that there is a potential for dangerous and potentially deadly arrythmia to occur with such diagnosis. 

Thank you so much for your help, I really appreciate it,

Hayden x

what is normal

by Tracey_E - 2023-06-09 08:58:41

Normal for us isn't the same as normal for everyone else. Our hearts are different so the things they pay attention to and the threshholds they consider normal on us are different. 

Enlarged Aorta

by USMC-Pacer - 2023-06-09 12:01:43

I had a very large aorta that they watched for years. But mine was due to my bicuspid aortic valve that became stenotic over the years along with an enlarged left ventrical. They watched and watched with annual echos until my ascending aorta got to their cutoff @ 5.5 cm and then told me it's time for surgery. They replaced my valve (tissue) and ascending aorta with a dacron graft and all was well again. My left ventrical and function returned to normal. That was 16 years ago. I just recently had my valve replaced again, but my aorta is still in tiip top shape! They are keeping an eye on yours so you'll be fine. 

Be calm

by Lavender - 2023-06-10 12:13:18

Hayden- your doctor is not concerned. 
Googling leads to fear of something that most likely will never happen. Don't waste one minute of today worrying about tomorrow. 
 

Get those A levels nailed!

Live your life.