So yes- as said in the title, my mum had a very unexpected type A aortic dissection on Boxing Day. She managed to recover (had some fluid around lungs+heart/irregular heart beats but was reassured that this is very common after huge surgeries). I've made the error of googling this disease and looking at life expectancy and it's making me really scared. My surgeon told me not to worry and that this will not impact her life expectancy but I can't help but be scared. it's been just 3 weeks and I'm scared something will go wrong. she's only 48 and I don't even want to go to university incase something happens and things go wrong. There's just not a lot of information online and I just keep looking at papers from 2005 with small study samples so I know it's not productive but I just am scared. I want her to live a long and healthy life and am in denial that this might not be the case
My mum had an Type A aortic dissection - British Heart Fou...
My mum had an Type A aortic dissection
Nobody here is medically trained .We exchange our experiences and many people find this helpful.So you may well get advice .I would also call one of the British Heart Foundation nurses on their helpline. I have done this a couple of times myself and found it so helpful to have someone experienced talk through the problem with you. It is a free helpline and they give you as much time as it takes ....well that was my experiences. Worth a try.
Hello, refrigerated6.
Sorry to hear about your Mum, and yes, AD is frightening. I had a type A 4 years ago but am doing pretty well, even at my age (67 now)! You're right, it's not great deal of help to Google AD. Much of the information is somewhat old and there have been great strides made in recent years in the repair of dissections and subsequent monitoring. The good thing is that your Mum was diagnosed and treated. Also, a young age helps.
Before going into any of the issues, my first recommendation is that, if you are on Facebook, you join the AD Awareness Buddies group at m.facebook.com/groups/Aorti... I'm a member there and there are currently over 600 of us. You'll need to answer 3 or so brief questions just so the mods know your background (in your case, your Mum's - there are plenty of relatives/carers on there too). You'll find the folk there have a huge wealth of experience between everybody, lots of real information, and it's a great bunch of people with lots of support. The FB group is the support group for aorticdissectionawareness.org/
Whether on FB or not, another great site is the US site by AD specialists IRAD: livingwithdissection.iradon...
Yes, fluid around the lungs and irregular heartbeat is common and will usually resolve within a number of months (we're all different so I can't be any more specific), possibly with the help of meds. You'll find a wealth of further information on such topics on the AD Buddies group, but I'll keep an eye out here as well for you in case you have further questions.
Your Mum may need some extra help for a while, but without knowing details I would hope there's no need to be too concerned. How long she takes to become fully independent again is very variable between individuals, so that might need some monitoring.
Hope this helps
My mum went through this 3 weeks ago. Only 55, completely out of the blue. As far as the heart is concerned she's recovering well and things are mostly stable now. She also had fluid on one of her lungs which required a drain for a few days and irregular heart beat and blood pressure which they controlled with medication. However, somewhere along the line it has caused her brain damage. We're hopefully getting prognosis tomorrow after the doctors have had their meeting to discuss the MRI results. The links above are useful, thank you. Trying to find similar cases to get a better understanding of what's going on.