Dilated Aorta?...

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Dilated Aorta?...

Postby HarrietHawkins1 » Mon Jun 23, 2014 7:08 pm

Hi everyone.

After some experiences from anyone out there.
I was diagnosed within multiple VSDs and coarctation of aorta at birth and have had multiple repairs, the last being in 2006.

I lead a very "normal" active lifestyle. I work full time and attend fitness classes around four times a week.

Today I had my check up at Southampton General. We were in the consulting room for ages whilst they looked at my echo. It turns out my aorta has dilated slightly . The consultant said this can happen after the type of repair I have had and she said it is likely to continue to dilate. However if it does so at a slow pace then it isn't too much to worry about at the moment. They did mention beta blockers but my pulse rate is only 43 so they would make me whoozy. There are other meds but we are considering conceiving soon(after an MRI to make sure all ok) and I can't be on any meds throughout pregnancy.

Has anyone else with coarctation been diagnosed with dilation? How long have you had it and are you on meds?

I have never been on meds on my life and the mention of it has scared me.

I feel healthy and well in myself but it is scary to think I need to go through further tests and have some more monitoring for this dilation.

I assumed I wouldn't need any further surgery but the consultant today said that IF I do need any on the future it is likely to be linked to this dilation.

Feeling utterly deflated :-(
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Re: Dilated Aorta?...

Postby Tricky Dicky » Tue Jun 24, 2014 8:56 am

Hi Harriett,

Sorry to hear that you are a bit deflated. I haven't got coarctation, but I do have a dilated aorta. When the consultant first noticed it, about ten years ago, I was quite worried, but having dilated it seems to have settled (or is dilating at a very slow rate). I have it measured annually and they keep talking about an operation, but I haven't needed it yet.

Good luck :D
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Re: Dilated Aorta?...

Postby dorsetbutton » Wed Jun 25, 2014 1:07 pm

Hi Harriet,
I can't comment on living with a dilated aorta but I can comment on having to take medication.
It is quite a scary thing when the medics tell you that you need to take medication. We can feel that our body has let us down and resent the need for the drugs.
I can remember very well taking my first dose and thinking, 'this makes me feel old and ill and I feel cross and hate being so dependent!'
For me these feelings slowly diminished and now taking the meds is just part of the normal routine, like cleaning my teeth.
Any change in our lives, especially ones we haven't chosen, will take a bit (or a lot!) of time to get used to.
I now accept that I have to take the meds and am grateful that I live in a time when we have so many helpful medications available to us, BUT I still go through a bit of the, 'this makes me feel old and ill....' when the medics tell me I have to take a bigger dose or an additional tablet!
Take care Harriet. x.
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Re: Dilated Aorta?...

Postby ipkenny100 » Wed Jul 09, 2014 7:58 pm

Hi Harriet,

Just a quick note to say that I am in the same boat. I was born with a Coarctation and had surgery at birth but at 30 haven't had any other repairs yet and am lucky enough that I have never had any affect on my life. I saw a Vascular consultant for the first time 6 months ago in relation to a dilation of my aorta. I have been told that I may need surgery but there is nothing to indicate when as predictions are difficult because there are limited experiences of people with similar conditions!

I agree it is a right pain in the backside and seems to come at the most awkward of times (I have just got a new baby daughter and am trying to start a new business). The only thing I can suggest from my experience is to keep a note of when the consultant says your next scan should be carried out and call the hospital to ensure you get an appointment at those times to avoid delays so you can get a better picture of the situation as soon as possible. I had to remind the hospital to get a scan at the right time and am due for the second scan after the first mention of this dilation in the next few weeks.

From what I can gather it is a bit of a long haul but it sounds like you look after yourself so you are doing all you can!

Hope it helps to know you are not alone

Iain
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Re: Dilated Aorta?...

Postby Jim_1903 » Sun Jul 13, 2014 10:22 am

Hey Harriet,

So sorry to hear you feel deflated...It's not easy.

I cannot comment either on a dilated aorta, though do take 6 tablets of a morning and 1 & 1/2 of an evening. For me it is routine and as another poster said, like brushing your teeth! I don't always feel so cool about it; occasionally I reflect on it thinking it feels a little unfair or I wonder about side effects etc. However, I also try and remember how I feel when I miss a dose (not great!)

I also know how it feels to receive the 'we need to keep an eye on that' news, as my consultant mentioned this regarding one of my valves which is leaking. It has got slightly worse over time, which is why it was mentioned and I know any intervention would be a big deal. However, I have now had some time to think about it and as they say, time, speaking with friends and specialist nurses helps. I feel more comfortable now and it doesn't dominate my thoughts.

I hope all goes well for you. It must be exciting to be considering a baby, yet also difficult with all this going on. Hopefully you get the go-ahead health wise.

Take care.
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