Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

On May 2nd this year (2015), I started to feel ill during the day... Thought I had a migraine and so went to sleep for a couple of hours. I was away for a weekend, on my own for the first time since my husband of 25 years had left me. My 4 kids (ages 16 to 24) were all away doing various things for the bank holiday weekend. So I was taking the opportunity to be 'brave' and do something for myself for once!
As the late afternoon and evening came, I felt more and more unwell, with a degree of pain radiating through my back and upwards. I then went very cold and clammy....enough to set alarms bells off in my head. Thinking heart attack? I went to the desk of where I was staying and asked for help, mentioning that I needed an ambulance. Of course, I was staying in the middle of rural Devon...makes from anywhere. However, first paramedics arrived and then an ambulance. I was taken to Barnstable hospital, where a quick thinking doctor insisted on a CT. Scan ,as I was so poorly. That is the last thing I remember, until I woke up 4 weeks later in in Plymouth cardiac ICU. Apparently, I had become unconscious quite quickly, the CT showed a very large aortic dissection, which required immediate surgery. I was transferred to Plymouth in the middle of the night, and the surgeon came in on his day off, in order to operate on me. My kids were contacted and told that I was in transit to Plymouth, but unlikely to make the journey. We live in Warwick, so I was miles from home, and they were all miles from me.
Amazingly, I survived the journey and then the surgery. My fantastic kids came to see me as often as possible, spending hours by my side when I was in my 4 wk coma, my two daughters started and finished their GCSE exams and university finals, my sons carried on with their jobs, with sympathetic employers who gave them compassionate leave to visit often.
I had many complications after the surgery, kidneys packed up, tracheostomy, chest infections requiring chest drains, a DVT, AF and septicaemia. Most of this took place without my knowledge, apart from the last chest drain.
I returned home finally, towards the end of June, having had to learn to stand and walk again, due to being so weak. It has been a very slow process since then. I still get very tired, and won't be back at work until at least January. I am a primary teacher, so need far more stamina than I have regained so far.
I refused to go on the internet until now, to look things up, as I understood the enormity of it all from the the hospital and my GP. However, this site cropped up when I was researching a couple of things, so I decided to join, especially as I know of no one else who has been through this. So I am hoping to get some support in some small way from reading about your journeys and recoveries.
Anne

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Comment by Angela Kirkham on January 27, 2016 at 14:01

Hi Anne

I have not been onto the site for sometime but was interested in your story of AD and subsequent emergency surgery. It was very similar to my own but yours seemed much more serious with the complications. By coincidence I live in rural Devon between Exeter and Barnstaple and was taken to Exeter first and then transferred to Plymouth. I am sure you will agree the Cardio-thoracics team in Derriford were excellent. I hope you are regaining your strength- it is a long haul and you have to be patient. I am 19 months post-op and feel very well. I am back to "normal" more or less but some days I feel tired and have to take it easy. It is about listening to your body and heeding it. Your family sound amazing and so supportive. Mine were amazing too and all came to see me the day after surgery (like your surgery mine was also performed overnight ).

I hope you are progressing well on the road to recovery. It certainly is a scarey thing to have happened and we are all so fortunate to have survived it. Good luck. 

Angela

Comment by Tim Manning on December 12, 2015 at 15:20

Hi Anne,

I hope you're continuing to feel better. My experience was not dissimilar to yours, and I understand pretty much how you felt and feel. Give yourself plenty of time, and don't feel guilty about it. Greg's right in what he says below re the pace of recovery, so don't feel discouraged at this stage.

Comment by Del Cosson on December 9, 2015 at 8:56
You are very brave Anne. Time will assist you in what you can and now cannot do. I had a dissection I was not expecred to survive in February last year. Prior to that I thought I was bulletproof, however I know realise there are many restrictions I have to learn to live with as I am sure you will. Be very kind to yourself and rest at anytime you need to



God bless you and I wish you all things good
Comment by Gregory Smith on November 21, 2015 at 13:31

Hi Anne,

You're a very lucky woman. Lucky the doctor recognised the symptoms and ordered a CT scan - many don't. Lucky you survived - many don't. You are now officially one in a million. Be proud of that. Recovery can be slow and it may take some time to find the right combination of drugs to control your blood pressure. I know, it took them 2 years to get mine right. Stay positive and it'll all come to you.

Regards,

Greg

Comment by Graeme on October 26, 2015 at 13:46

Hi Anne,

what a story of bravery and inspiration! Wow! It's so uplifting even 13 years since my own massive Type A AD in 2003 to keep on seeing such grit and determination. (And now last year being told I also have a fully dissected aorta (Type II) right down to my Illiac arteries wi..... :-( ). Anyway, a belated welcome to our group and as Kimberly said don't try too hard in these first months.. rest and get your strength back! Being tired and taking a daily nap has been the new norm for me for years and hey - it works for me (the nap...!) Take care and keep posting and asking questions, we are all here to help and support each other!

ps congrats also on choosing to become a lifelong member of the group! Great stuff! 

Cheers

Graeme 

Comment by norma bell on October 26, 2015 at 12:10

Hi Anne - I'm up north, will be having my surgery at Wythenshawe Hospital.  I had my valve done there and they were very good.  They seem to have introduced some good pre op procedures, I went for the usual swabs for MRSA and they've found two other superbugs to swab for! They also do a meeting with the ICU nurses and physios for patients and relatives to go through the procedure and explain what to expect, I think this is especially good for relatives, as a patient you've no idea how awful you look it must be a real shock for anyone visiting!  Anyway that's this Friday.

How are you feeling? Its frustrating 'taking it easy' isnt it?  I hope you;ve got lots of support at home.  If you get fed up of being brave and fancy a good old moan do feel free to share it.  I find thats one of the hardest things, I dont want to scare my daughters or worry my friends so I do the 'it'll be allright on the night' act but sometimes I just want to cry and say why me?

Anyway hope you're feeling a little stronger every day and taking pleasure in everything you do. xxx

Comment by Anne Cotton on October 24, 2015 at 10:00
Hello Norma. I am so pleased you are having elective surgery. I understand that it is a much safer procedure, in spite of being a difficult surgery. Where will you be having it? Being an emergency was certainly scary, and given how often the diagnosis is missed, I am so grateful to be one of the survivors! Wishing you all the bit for a very successful surgery and recovery. Make sure you are kind to yourself and don't expect too much.
Anne
Comment by norma bell on October 24, 2015 at 9:22

Hi Anne, what incredible things have happened to you, what a shock both physically and psychologically.  I hope you're gaining strength day by day and I'm glad you found this site having something so traumatic and rare could be isolating but you're definitely not alone, I'm sure by now you're looking at other peoples stories and I hope you're feeling less alone.  

You've inspired me - I found out a year ago that I had a thoracic aneurism that needs surgery.  I had a mechanical aortic valve 5 years ago because of a congenital abnormality but I didnt know that the same congenital problem also left you prone to aneurisms - probably a good thing! I've now been given a date for surgery (17th November) and to be honest having lived with the knowledge for a year I was wondering about not having the surgery and just getting on with my life because I am afraid of facing the 10% mortality rate I've been quoted!  Now I've read your story I realise how lucky I am to be in a position to have elective surgery and I'm going to try and stop being a wuss and go for it.

I wish you all the best, enjoy every day, and if you're having a bad hair day have a rant, you'll always know that everyone that reads it will know how you feel and sympathise. xxx

Comment by Kimberlee Jones on October 22, 2015 at 12:56

You are not very far out from surgery.  They will get it under control, sometimes it just takes time. A little bit of advice.  Life is short no matter who you are, don't live in yesterday or in tomorrow. Live in the now. Yes you're alive, now live! You will find as you heal and as you are able to return to "normal", the easier it will get.

*hugs*

Kimberlee

Comment by Anne Cotton on October 21, 2015 at 14:53
Thank you Kimberlee, it is so good to hear that some folk survive such a long time. I can't imagine having a new born baby to look after too. I am still quite scared about my survival long term, especially as my blood pressure is proving difficult to bring down to an acceptable and safe level.
Anne

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