Advice

[Learnermum]

Hi all

My daughter has dilated ascending aorta and has recently been advised by her cardiologist that she should refrain from doing many of the physical activities she does

I would really appreciate it if you have this condition and could share your experiences Both good and bad

Thanks for reading

[Alisbabas]

Hi

I have a mildly dilated aorta and haven’t been advised not to anything over strenuous only to keep my blood pressure in range not high.

I wasn’t told too much as I never got to see my cardiologist as he’s always busy so I seen a cardiac nurse.

I have a bicuspid valve which is common to have a dilated aorta which over time will probably swell more. I am supposed to be having yearly scans but due to Covid it’s not happened.

I will have to have surgery eventually but it may be years before this happens.

I’ve only found out 2 years ago and found this group so helpful and made me not to worry as much as I did when I was first told.

How old is your daughter? Does she have a valve problem or just the aorta dilation.?

There are lots of knowledgable people on here who have more experience that can give you their experience too.

Hope this helps a little

Ali x

[Learnermum in reply to Alisbabas]

Thanks for your input Ali, my daughters 30 is autistic and it was found 3 Years ago. She has had annual scans until now

The cardiologist is doing tests to try to find the cause ie genetic or inherited

We have never been told to restrict her physical activity until now which is why I’m worried

T x

[Alisbabas in reply to Learnermum]

Hi,

Nic gave a great reply “at least she is being monitored”

Good luck keep us posted

X

[woodlandwonders in reply to Learnermum]

Hello,

When my Doctor tested for genetic causes for my valve issues, he was looking for Marfans and Ehlers-Danlos syndromes, which are connective tissue disorders. If he is suspecting/ruling these out it would fit with the advice not to do anything physical/strenuous.

I appreciate this will be hugely difficult to explain to your daughter. I really feel for you.

It is very positive that he is looking into the cause of your Daughters condition, rather than just treating it. She will then get the correct treatment at the correct time.

Thinking of you

[Nic25]

Hi Learnermum, I had an ascending aortic aneurysm (which I'm guessing is what you mean) as well as aortic stenosis for many years before having the aortic valve replaced at the end of 2018, at age 50. Really sorry to hear that about your daughter, must be a shock to you and her.

However, while I appreciate it probably doesn't feel like it right now, it is arguably good news that she has been diagnosed, as the fact an aneurysm often doesn't have any symptoms means it can often get missed and only get discovered when you're being rushed into A&E because it has burst (which no one wants).

The fact it's been spotted and diagnosed means she'll now be closely monitored and kept under the close eye of the cardio team, although it may mean regular check-ups. Also, while everyone is different, these things can progress at different speeds, often quite slowly.

I had my aneurysm and stenosis for decades and for a long time had just yearly checks and even every second year because things were very stable and so nothing much to worry about - although I was advised not to do any heavy lifting, where you really have to strain, as well as competitive sports. So I can understand your and her disappointment about being constrained in physical activities she has previously enjoyed.

Eventually it was the stenosis more than the aneurysm that forced their hand and led to the operation happening, although they did repair/stitch the aneurysm anyway at the same time and so (hopefully) that's now all resolved.

Hopefully it will be the same for your daughter - many years of essentially 'normal' life while this condition is managed by the professionals. But if you are really worried or have things you're not sure about, do try and talk to them if you can or even your GP to help set your mind at rest.

I'm sure it's been a massive shock for both of you, but I hope this helps at least a bit? Good luck and take care.

Nic x

[Learnermum in reply to Nic25]

Hi Nic, thanks so much for taking the time to reply

Yes it is an aortic aneurysm, my daughter who is 30 and autistic was diagnosed after having sepsis 3 years ago.

She’s had yearly scans until now and we went to what I thought was a routine check to be told about all the restrictions on her physical activity ( this is going to be extremely difficult as we keep horses which she cares for daily) so this is a massive deal

You’re right this is a massive shock to us Nic.

The cardiologist is amazing and wants to find the cause and is arranging genetics testing etc so I count us as being very lucky

Thank you again Nic x

[Nic25 in reply to Learnermum]

OK wow tricky. That does sound very disappointing for both of you. I'm surprised to be honest they're saying caring for horses is off limits but obviously I'm sure they know best! But hope you get some clarity and things work out. Good luck! Nic x

[Congenitalheart]

Hi! I’m so terribly sorry to hear about your daughter Ali. I am not on here often but felt compelled to respond to this as I can relate on so many levels . I was diagnosed late, at the age of 3 with congenital heart disease. I had an aortic coarctation repair at the age 9 ( I was fortunate not to require any surgical interventions prior to that date). I also have a dilated ascending aortic aneurysm. I was also given strict guidelines with respect to physical activity ( isometrics remains a top one for me to avoid completely). I did end up rupturing my aortic aneurysm despite annual MRI’s and had emergency open heart surgery which was successful at the time, however my aortic aneurysm has dilated out again and is now measuring 49-51mm. I have a unicuspid aortic valve, a prolapsed mitral valve, a bicuspid tricuspid valve, a VSD and a repaired ASD. I was also diagnosed with cardiac microvascular disease at the age of 33, I am now 37( no history of diabetes, I have always been underweight, no history of hypertension, no coronary artery disease, no hormone level issues etc, my cardiologist can’t explain why or how I got this microvascular disease). I am again just being monitored annually with MRI’s for my aortic aneurysm and every 4-6 months for everything else. As a few others mentioned the key is getting the diagnosis of the aortic aneurysm so that it can be monitored and physical activity can be adjusted accordingly to limit risk. If you ever have any questions don’t hesitate to reach out, we are all in this together, this is such a wonderful online community!