New here and scared senseless

[JannerJohn]

Hi all, since learning that I have a stenotic bicuspid valve and need AVR and have an aneurysm that requires repair root and ascending aorta I think, I have been suffering from extreme and possibly irrational anxiety. I have no real symptoms but have been constantly worrying about death, stroke, post surgery complications, life expectancy you name it and I've worried about it. I'm constantly looking on the internet at all sorts of data and information about complications, life expectancy and I'm sure this is not a good thing to do. I saw the surgeon and he was lovely and seemed fairly confident this is quite routine and my wife says I'm starting to be irrational and that this is repairable.

I didn't expect this at 49 years old and if I read anymore about Bentall procedures and OHS statistics I think I am going to go bonkers. I desperately want to see my young children grow up. Any advice or experiences greatly welcomed.

[Prada47]

Hello Firstly how is it in Devon this fine day that you woke up and are ready to face the day ahead . Try to not read Dr Google and his associates they don't know anything about your condition But your Surgeon does. It's not easy to cope but what you have to believe is, it is pretty routine to Surgeons they probably do 4 or 5 a week !! A lot of people here have been through Surgery and are still here to tell the tale !! Do you have a date ??

Hands Face Space Vaccinate.

[Fredders]

Firstly, stop looking things up on Google, as you have found out, it makes things worse not better. I have had two AVR ops, the first when I was 52, which also involved having my aortic root wrapped. AVR ops are commonplace nowadays and your surgeon will have done loads of them, so you will be in good hands. Nothing is going to stop you being anxious about the op, that is perfectly normal. I got a couple of BHF booklets about the surgery and they were brilliant at explaining things clearly in layman’s terms.

Now for the practical side, get yourself a triangular pillow for when you come home, as sleeping lying down will be difficult for the first week or so. My husband slept in the spare room initially so that I didn’t have to worry about keeping him awake if I couldn’t sleep. Practice getting up and down from your armchair/settee without using your arms - you shouldn’t put any pressure on your arms initially as it hurts like hell across your chest if you do (you’ll only do it once I promise you 😜). When you go into hospital take with you something to read, puzzle books, tablet, phone (remember your chargers too), however you will probably find that after your op your concentration levels and memory are rubbish and your tastebuds appear to have gone on holiday! This is normal and will eventually get back to normal, but varies how long from person to person. Take earplugs in too, it can be very noisy on the wards, even at night.

For both my surgeries I was in hospital for about a week and you do need someone with you at least for the first week home. Take things slowly, it’s a time for baby steps and as tempting as it may be to do something, think first. You will tire very quickly, so if you need to, have a nap. Take the painkillers they give you, immediately after the op is not a time for heroics, they give you them for a reason - so that you aren’t in so much pain that you can’t do anything. You can reduce your intake as you feel better. They like to get you walking from day 1 after your op and continue when you get home. Again, don’t overdo it, remember that you have to get there and back. I’m lucky because I live on an estate where I could walk round my close, then include the next one and so on, gradually increasing the distance.

Both times I was back driving after six weeks, although keeping it to short trips initially, and back at work after 12 weeks (working shorter hours and gradually increasing t back to full time).

Hope this is some help. I’m sure others will be along to give you their help too. Now you’ve found us, just give us a shout if you have any questions or just need some moral support. There are loads of us who’ve been through it and come out the other side. 😺

Take care and stay safe.

Wendy

[Cliff_G]

John, when we hear of problems around the aorta it is going to worry us, it's only natural. To allay that concern one way is to get as much information on your own situation as you can, from your doctors, and not, as others habe said, from too much internet searching (though targeted specific research from proper sites can help).

Aortic Dissection Awareness in our Think Aorta campaign have produced a simple patient leaflet. Hopefully this link should work c2fee2fb-fe83-40a6-b2a2-f4a... or go to Thinkaorta.net and scroll down till you find it. Read it and if you aren't getting answers to the questions it raises, ask your GP for referral back to the specialists.

In terms of the surgery, AVR, root and ascending surgery is pretty routine, and much safer in the elective setting. I had an emergency op due to a dissection, and had a Bentalls, ascending and arch replacement and a few other items off the surgeon's menu and I am doing well, albeit I wish it had never been an emergency.

THE most important thing you can do is make sure your blood pressure is well under control - 120/80 rather than the NICE guidance of 140/90, which is based on risks other than the aorta.