Feeling confused

[Evbe]

After being diagnosed with heart failure two months ago, I’ve had lots of blood tests, CT and a MRI. Bloods have come back good, CT was clear (no blocked arteries), I’m on two lots of meds but the results from my MRI have left me really confused. All I’ve had is a letter (summed up with the following):

- The scan is compatible with a dilated cardiomyopathy

- the LVEF has improved to 42% (it was between 20-30% before starting meds so they’re doing their job).

- there is no areas of scaring or fibrosis (positive)

- the scan does not exclude a cardiomyopathy due to either left bundle branch block or hypertension (no clue what this means).

The consultant is requesting I have genetic testing.

To me this seems positive but also contradictory. I’ve lots of questions to ask the consultant but not sure I have an app booked in. I am due to see my Heart Failure Nurse in two weeks for the first time.

Is this still classed as heart failure? What happens next?

[Tos92]

Hi  Evbe

It is hard to interpret letters and reports from the doctors when we receive them as we’re not often exposed to medical terms.

In terms of your dilated cardiomyopathy, “dilated” often means enlarged. I have attached a link for Cardiomyopathy U.K. below should you find it useful. There is also a number on there which you can call for further support and perhaps questions regarding your recent letter.

cardiomyopathy.org/

Your LVEF is improving which shows the medication is working as you’ve stated which is good news. I believe the normal ejection fraction is between 50%-70%. This is just based on my cardiologists’ estimates. I think these estimates can vary from cardiologist to cardiologist but often is within that range.

Of course, the no scarring and no fibrosis is good news too.

When reading your story, it reminded me of another user we have on here who has some similarities. I will tag  Hidden and she might be able to provide you with some more info, including her experience with the genetic testing side of things.

Please try not to worry too much as it seems the doctors know what they’re doing.

Let us know how you get on as and when you get your results.

All the best.

Tos

[Evbe in reply to Tos92]

Thank you for your reply.

I will definitely take a look at the link you have suggested. I was hoping the MRI would give me a solid answer as to what is going on but mind is blown again haha.

[Evbe]

Thanks for responding. This helps to understand what has been said a lot more. When I was in hospital at Christmas the doctor there mentioned a LBBB. This could make sense if it’s electrical as my arteries are clear. There are heart issues in the family so this could also explain it. What does the genetic testing involve?

Can I ask, has medication improved your EF at all?

[Evbe]

This has been so helpful. Thank you again

[Evbe]

Thanks. The unknown is stressful isn’t it.

Oh wow, it sounds like there are heart problems in your family and there have been too. I think there are a lot in my family too so am wondering whether it’s inherited.

Crikey, that’s very young for both your grandmother and your mum.

[Evbe]

You definitely can’t argue with genetics!