Aortic dissection & aortic aneurysm information support group

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

Since my Aortic Dissection in September 2010,  followed by two operations and a stent being put in,  I find that I live in almost daily fear of another dissection.  I have become very aware of my own mortality and I find it at times very stressful to live with. There are days when I am exhausted.

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Comment by Kimberlee Jones on August 29, 2011 at 18:29

I can relate so much, I was also the same way for the first couple of years and a way still am.  With me the thought of leaving my kids before they are grown up scares the hell out of me and the thoughts that I might are with me every day.  I have learned not to let the fear control my life and even appreciate it in some ways. That fear lurking in the back of my brain reminds me to enjoy every moment of every day especially those I have with my children. Something I think many people don't do, life seems to run in such a fast pace for the world. My AD and the fear it has left me...reminds me to slow down and that is something I do appreciate.

 

*hugs*

Kimberlee

Comment by Lars Patterson on August 28, 2011 at 7:10
Thank you for all the good comments. They are all very helpful.  It really helps to hear what other people have been going trough and how they are coping with it.  Best wishes to everybody.
Comment by Benjamin J. Carey on August 26, 2011 at 2:58
Wow, this is a great thread! I was blessed to have my aortic aneurysm diagnosed, but there was a rollercoaster of emotions before I finally decided to have it fixed and started thinking positive. We are human and everyone has their own "hangups" and different ways of dealing with things. People that have not gone through anything like this have no idea. The beauty of ADUK and other sites out there is that we're able to connect! @richard--I love that philosophy--morbid but true!
Comment by Lars Patterson on August 18, 2011 at 5:38

Thank you for your postings.  It really makes a huge difference to be able to talk about this here with all of you who have had similar experiences. I did see a councillor a few times. He was nice enough, but I was not in a mood to talk about "my inner child" and how I was "rebelling". All the postings here are very helpful. 

 

Comment by Cheryl Kerber on August 18, 2011 at 4:15

I had my first dissection in 2003 at the age of 38 - but didn't realize what I had gone through.  The following year by fluke we found my dissection/aneurysm and ended up with a repair of my descending thoracic due to a possible leak Dec of 2004, but they had to leave the original dissected aneurysm due to the extensive length of it.  We spent the last 6 years monitoring me by catscan and taking preventative heart meds.

I too lived the constant ticking time bomb roller coaster those years, until my scan showed my aneurysm had grown to the point of needing surgery - so July 7th of this year - they ended up replacing my entire descending thoracic and abdominal aorta.  I'm in the recovery mode now and am so hoping that that ticking time bomb feeling will be gone as the graft is in place.

You do become extremely aware of your own mortality - especially if you have family and those you are responsible for.

Along with that though comes a blessing of a new look at life itself.  We see things differently - we appreciate birthdays and the small things in life that used to go by the wayside (not on purpose mind you - life just goes at a fast pace, until you are knocked back a bit with what we have).

The fear of dissection I can't say will go away -- it might lessen a little here and there, but when you find you are thinking about it - try to distract yourself - even by stepping outside, flipping on the tv, calling someone, or just moving.  The thoughts (especially the negative memories) will always be there, but we can't let them win. 

I haven't found your story yet as I struggle with trying to stay awake when I get on the computer right now -- I'm still on some heavy pain pills that don't make it easy to concentrate, so I don't know where your dissection was or still is.  But I will get to it.

Just trust your gut and don't ever hesitate if your feel odd or feel pain - being proactive is your best choice.

You know how you are supposed to take care of yourself.  You know what your limitations are and you know what you have had and have.  If you have the opportunity - it doesn't hurt to seek psychological help either as really - all of us who have gone through this - experience some form of post traumatic stress ---- and little things like little twinges, can totally set off a huge array of anxiety effects including the fear.  All we can do is try to learn some coping mechanisms to help us through those moments.

Worse case scenario would be having surgery again - and speaking from this side of it - every year they get better at what they do and how they do it.  Not that I'm thrilled mind you - it's a struggle no matter what.

But as long as you take care of yourself and enjoy the gift of seeing life hopefully more appreciatively, that is what we have to try to hold on to.  Probably a good thing I'm writing this after my pain meds have kicked in because even though I whole heartedly believe what I'm writing now - pain has a nasty way of monkeying with your mind.

I'm still told by all the doctors I've seen, how lucky I (as are all of us on this site) are that we have survived what we have.  And I'm amazed at the medical field as to what they can offer --- they replaced my mush aorta and reconnected my kidneys and so many other little things down to trying to make the incision as non abtrusive as possible (still looks like a shark bit by left side). 

I, as hopefully you did too, have met some really phenomenal people through my two huge surgeries, and have felt the kindness and caring of other humans (as on this site alone) in a world that seems so very self centered - and has made me appreciate life just that much more.

Hold on to the positives as much as possible --- and when the negative crap hits - we are all here for you to help scoop it up and flush it down the toilet!

All my best,

Cher

Comment by Richard Deal on August 17, 2011 at 5:00

as morbid as it sounds my school of thought is simply: live your death, don't kill your life... the live your death part is basically existentialist thinking (we are born over the grave etc. etc.) and not that i think i am literally dying, if that helps to make it that little bit cheerier!

take care,

r

Comment by Lars Patterson on August 16, 2011 at 20:51

Thank you for a good comment. That is also how I see it. One person I met in the hospital (he had cancer) said to me: "I know I am going to die, and I am not letting that ruin my life".  I do find that I maybe undersetimated the pshycological effect the dissection and hostpital stay had on me.  I have become more aware of my mortality, but as you point out so well - it has always been there I was just not so aware of it. Also, when I now notice a bit of chest pain or a pain between the shoulder blades I do worry about it in a way that I never did before.  I suppose the remedy is taking care of myself with a healthy lifestyle, getting plenty of rest and exercise. And of course sharing about it. And regular check ups with the doctor.

Comment by Graeme on August 16, 2011 at 20:21

Lars.... I think all of us have been/are (to some extent where you are...) All I can say is my motto...Live each day like you might not have a tomorrow..Carpe Diem.... "seize the day"!  I do - Iknow it can be considered as being cavalier - but it works for me... None of us know how long we have - indeed noone in the human race can predict this with any degree of accuracy ...so go on - live your life...

 

cheers

 

Graeme 

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