Newly diagnosed Acute Aortic Syndrome.

[Weeemac1]

Hello,

I knew I had to reach out to others. I’ve just been diagnosed with the above. I’ve been hospital for a week and have had X-rays & CT Scans. Everything is stable. Apart form my mental health! The care I was given was so good. God bless the NHS. I’ve been sent home with so many pills and I have to take my own blood pressure 4 x Daily.

I suppose I just want to say hello and if anyone has any advise on ways to keeping calm they would be much appreciated. I think I’m just so scared now I’ve not got the protection of the hospital.

Rona

[Hidden]

Dear Weemac1

welcome to your first post on here and what a post it is,

Your post carries the universal message of how powerful our mental health can be affected before, during and most certainly in the recovery stage of our illness.

And to what degree we can be affected will vary from person to person.

I don't know about you but I can be honest and say that I took my heart for granted, I presumed because I was fit that my heart was as well....how very wrong and after all the treatment it has made me extremely aware of this incredible organ and the work it has done { and long may it continue } for me.

But that wake up call for me came with downsides both physically and more powerfully, mentally, the latter I chose to ignore for a while but now I have the help I asked for and slowly the old me is coming back { God help everyone }

I agree totally with you when you say that you felt safer under the "protection" of the hospital, I think a lot of us have been on that journey, a whirlwind of intense care and treatment that is over as quick as it started, you feel almost dumped on the wayside.

You are not alone and thank you so much for opening up to us with an honesty that is both rare and refreshing.

You will get though this and if we can help then post away

Take care

[Weeemac1 in reply to Hidden]

Hello Blue1958,

So nice to get your speedy reply. It means so much. Back home to rest but we have home renovations going on. Good because my husband is kept busy. A nightmare for me as the house is upside down. I’ve decided to ignore all of it and just spend a bit of time researching BHF website and staying as far away from Dr Google as I can.

The most confusing thing for me is the advice is to not overdo it but also to not do to little. I guess I’ll learn this as I go along. My back is bit sore so when that starts to chat I’ll sit and rest. I even felt worried blowing my nose earlier!!!1 🤧

[Blackcatsooty]

dear Weeemac

Welcome on board.

NHS is pretty fabulous when we are really ill.

Now you are home then perhaps you could look forward to recovery. NHS not fabulous at all for this part of your journey.

I use relaxation techniques most days. Nothing grand, just ten minutes of relaxing every muscle and a bit of meditation.

Many of us find we get bad dreams and poor sleep. If you get a bad dream then do not dwell nor even think about it.

Getting good sleep is an art isn’t it. I tried more blankets, less blankets, a different mattress and even a different room. I then tried sleeping with a light on. Eventually sleep came. I worked out that I need 7.5 hours sleep. Then I started to retire to bed at a fixed time. This is all totally different from my previous routine, but it works.

One trick, when I could not get off to sleep for weeks, was to buy a tinnitus relaxer. About £35. Gets me off to sleep and also does a bit of relaxation.. you might even find your GP surgery will lend you or even give you one of these little machines.

Lots of us are out here for you

Sooty

[Weeemac1]

Hello Blackcatsooty,

Thanks for your reply. I actually have been yoga for some years at home. Im worries in case I overdo it. I’ll just start with really slow low to ground stuff first. But yes meditation is wonderful. I’ll need to make sure I do it daily. I do have the calm app so I could look into that a bit more thoroughly. I only really used it for sleep stories.

Pre hospital I loved laying in bed. Now my mind and body start chatting away at about 6.30am. In critical care the alarm call is 6am for bloods. Since the pain came I feel like I’ve been waiting for something, the pain to ease, the GP to call back, the X-ray & the blood pressure to stabilise then finally waiting to be told I could go home.

I will follow your advice and meditate and look into a tinnitus relaxer. I didn’t know such things existed.

Thank you

Weemac

[Blackcatsooty]

dear Weemac

Yoga is perfect. I didn’t mention how I utilised yoga because many don’t have a clue about yoga and would be put off. I did seated yoga and then gentle yoga. Two days after my op I was doing very gentle yoga at the foot of my hospital bed, which pleased the nursing staff no end.

A tinnitus relaxer gives options of soothing sounds such as waves on a beach, all overlaid by white noise, mine switches off after 30 minutes, by which time I am asleep.

I got mine from Amazon.

I aim to do six days a week. Easier than seven.

Sooty

[Weeemac1]

Afternoon Sooty,

I’ll have a look on Amazon. I did sleep much better last night. Been quite teary today but I really did expect the fall out now I’m home. Gonna try and have a nap under my heated blanket. We have workman in the house this week so it’s not very relaxing but trying not to get too irritated. I’ll dust off my yoga mat and hide in the conservatory. Lol

Weemac1

[Cliff_G]

Hi Weemac,

Welcome to the club not one of us wanted to join!

I take it from the words 'stable' and 'so many pills' that you had a Type B dissection and are being 'medically managed', I may be wrong?

AAS comprises aortic dissection (AD), penetrating atherosclerotic ulcer (PAU) and Intra-mural haematoma (IMH). Most will only get the AD bit (type A or B), PAU can exist on its own but also lead to an AD, and IMH is often a result of an AD spreading, but can also be an initiating factor.

Your thoughts to avoid Dr Google are wise. The BHF site has some content on AD, but by far the best info is the Patient Guide written by Aortic Dissection Awareness, and was written specifically for people such as yourself, is endorsed by the main medical professions, and covers everything including the mental health side.

You can download a copy at aorticdissectionawareness.o... Your hospital might have free printed copies (if not, message me the name of the hospital and I will arrange for them to get copies.)

You can also get support from loads of folk who have exactly similar experiences to you, further help on getting a printed copy of the Guide, by joining the AD Buddies Facebok page, linked on the home page of aorticdissectionawareness.org/

Good hunting,

Cliff

(p.s. I'm also in Scotland, rural NE)

[Weeemac1]

Good evening Cliff C,

Thanks for your message. I have been trying to understand the terminology. Slowly getting there but you r message has really helped. Yes I do have Type B Dissection and yes I am being medically managed. I have to keep my blood pressure between 100-120/70. So very low. I’m becoming a dab hand at taking my blood pressure. Trying not to obsess (not easy).

No I wasn’t given a patient guide when I left hospital. I was in Dumfries so maybe it would be good to send them a copy as you have offered. I really appreciate the download and link to Facebook group.

Honestly I appreciate all your support and links.

Many many thanks

Weeemac 😀

[Cliff_G in reply to Weeemac1]

Glad that has helped. I'll see what I can do!