Aortic dissection & aortic aneurysm information support group

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

Hello Everyone,

I found this site while searching for info from others who have survived a ruptured abdominal aneurysm, but I haven't found very many others.  Am very happy to have found you guys.

Three weeks ago, my husband and me were on vacation in Punta Cana, para-sailing, swimming, etc.  But for the last 2 weeks we have been in Hell. 

On Feb. 3, Bill was barbecuing on the patio, when he said he felt nauseous, and had to throw up.  This was as 6PM.  He went upstairs to lie down, while I finished preparing supper.  Soon I heard him calling for me, and found him on the floor, vomiting.  I helped him to the bathroom, and he was so sure he had food poisoning or something.  He told me that everything hurts - his stomach, his back, his hip, his groin. 

Since he seemed in great pain, I thought maybe he was having a kidney stone or something, and asked if I should drive him to emergency.  He thought maybe a disk in his spine had popped, he said.  But then he said he could not walk downstairs or to the car, and I got so scared, and I picked up the phone to call 9-1-1, although he objected. 

But suddenly, he said "Something Bad just Happened!"  and I dialed, and he fell on the bed.  His eyes rolled back, and he seemed to lose consciousness, and I screamed to the 9-1-1 man - "please get here, please get here" over and over until the 9-1-1 man brought me to my senses and I realized the criticalness of following his instructions.  He told me to lay Bill down, flat, and to feel for breath, and he asked me all the symptoms.

In only about 3 minutes, I saw the paramedics lights outside the window, and I bolted down the stairs to let these angels in.  These wonderful men asked me all the right questions, and I think they figured out what was happening very quickly.  From what I know now, they called ahead to the nearby hospital, and thank God a wonderful thoracic surgeon just happened to be there that night.  The paramedics made the call, and the surgery team was ready.   By the time the ambulance got there, the surgeon was ready and waiting.  By the time I closed up the house, and drove in a daze to the hospital, I was told that Bill was already in emergency surgery. 

Of course, it was a terrifying night of Hell - the news just seemed to get worse, and worse, and worse throughout this thing... 
It has been a long 2 weeks, and I need to get some sleep now, but will continue more when I get the chance.

I just wanted to make a brief intro with my story, and to acknowledge this real miracle here, where the system actually worked!  From what limited tales I read about this beast, I am seeing more and more what a miracle Bill and I have been granted.  From the 911 fellow, to the knowledgeable paramedics, to the wonderful experienced surgeon, and the critical care crew - we owe them all so much gratitude.  That, along with being just where we were - rather than on vacation, driving, or just about anywhere else!  I am still in a dazed and confused state at the moment.

Thanks for being here,
Susan

P.S.  It amazes me how ignorant I have been all these years in not knowing about this disease.  There certainly is not a lot of public awareness about it!

Tags: abdominal, aneurysm, aortic, rupture

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Replies to This Discussion

hi susan,

what an amazing chain of fortuitous events! how lucky you both are to have had a great outcome...

it is also quite amazing to hear (again) how we as human beings instinctively know when something very serious has happened to us.

all the best for your bill's recovery... i look forward to meeting him on here at some point!
sleep well,
r
ps: we were all ignorant about this... until it slapped some sense into us...
"It's innocence when it charms us, ignorance when it doesn't."
Susan, Hi!

Firstly welcome to our Aortic Dissection Forum! Sorry I have not had time to welcome you personally but your joining welcome was well handled by Richard! I wish Bill a speedy recovery! Yes, Bill (and you!) had the 'Angel on your Shoulder(s)' that night..as most of us here in the forum did as well.. When you get time and Bill is better, take some time to read through the blogs and forum posts on the site..we are all frankly blessed to be alive as Richard said- a 1 in 5 chance of survival and the ones that have survived are due to in many ways luck - and medial professionals who knew our symptoms..which frankly is the main thing we are trying to do here - to try and educate the public - and the medical profession about AD symptoms and speedy diagnosis. More on that later! So welcome, and stick with it. It does get better!

Witht warmest regards

Graeme Archer
Founder
Aortic Dissection UK
Hi Susan,
I am so glad your husband is ok. He is very lucky that the the doctors were able find it fast.

This is a wonderful site, so you will be able to receive a lot of help. I wish you and your husband the best!

Maria T.
Susan,

I'm amazed that you were even able to start posting inline and well done. My partner had to live through the shock of the diagnosis without my support; I was under sedation for 4 days or so (sorry to be a bit vague but I was on heavy morphine when I woke up and hallucinating (another story) and it wasn't until I woke up that she felt confident that she still had me by her side.)

Once it is diagnosed and you're in surgery, it only gets better. The biggest risk as I see it is not being diagnosed correctly and not being taken into surgery. Once they've figured those bits out it gets better.

Charles
Hi Again - Brief update. Things are going well, I think, for Bill and I. Bill was moved from the ICU to a regular hospital room after a week, and then to a rehab for physical therapy after another week. That is where he is now.

It has been a scary, scary thing, watching him go from death's door through the various stages of recovery. It was almost like his entire system "rebooted", one function at a time... everything slowly coming back. Brain, kidneys, bowels... just 2 days ago, he finally got his taste back. (he said food tasted like sawdust until now.) He is looking remarkably well, although his 30 staples are still in, and the bruising looks brutal. :-(

The remaining problem seems to be with his legs, particularly the left one. Both are numb, but the left one isn't functioning very well, which is what they are working on in rehab.

I sure hope he can come home soon! Has anyone else run into leg problems? If so, I am wondering how the progression on this might work? Are there any other sites where AAA survivors talk about their recovery process that you have run across - it seems the night sweats and short term memory problems are experienced by some. I am really wondering when these things might start to resolve.
Thanks so much,
Susan
Hi Susan and welcome,

For you and your lovely husband it's early days, I know that might sound patronising but I promise it's not meant to be. I was told that what happens is such a shock to the body, a massive assault and it takes time for it to recover. I losted a lot of feeling and strength in my left leg and limped for a while but it passed.

The amount of drugs that are used to manage the body during surgery and after take a terrible toll, my poor husband listened to all my hallucinations for days, but it is just a stage in the process of recovery, it will pass, Bill has already shown such tenacity and strength getting to this point and he’s received the treatment he needed so now time is on your side.

I know you just want the same Bill back who was barbecuing just those few short weeks ago, but it really isn’t like that, it takes time but I can truly say hand on my heart that the life I have now eighteen month later is the happiest and most contented I have ever been, so hang in there you are Bills life line, I sometimes felt like I was sucking the life blood out of my lovely husband Richard and he is still my rock as the recovery process continues each day moving forward and further away from that dreadful moment.

Unlike you it took me nearly 6 months to find a forum of people who had suffered from AD and I‘m sure Graeme won’t mind me saying there is a big forum in the US www.aorticdissection.com which you may want to visit as you might find help and information there that isn’t on this forum but please don’t leave us as we are always here for you.

My thoughts are with you both – keep strong

Marion
Hey Susan

Marion is right - it aint easy and the recovery takes time... It took me 8 months to even get my head right and 12 months in all to get my body back to i think somewhere near to where it was before. The drugs are a kicker and i still get angry sometimes (that seemed to be a big side effect to me also after the event - anger..but I have learnt to deal with and eradicate it ) about 'why me' and also having to live the rest of my life as a borderline hemophiliac becos of my warfarin regime. A couple of things. I mentioned in one of my blogs about the night sweats. They were with me for about 8-10 weeks, and I went through up to 6 or so t-shirts a night changing them all the time as I drenched them. Pretty scary!

Why the sweats? Simples! It's your bodys way of getting rid of the anaethestic drugs that are used to make - and keep you unconcious for your op. Don't be fooled - they are incredibly powerful and it is a gross assault on your body with these chemicals. Once the body has started to recover it has to get rid of these foreign substances and the best way to do it is through sweating the poisons out. I remember the night I stopped sweating - it was a major celebration for us both. So do worry about the sweats - as if they were not happening to Bill it would NOT be normal. They will pass. As to the legs, apart form the rubbery walking I was ok. You have to remember that every person's body is different and is affected differently.

My 'bete noir' is my vision. It's now approaching 7 years since my AD and I still get sporadic attacks of horrible double vision that last for up to 5 minutes and sometimes leave me quite shaken for half an hour or so. Been to all the specialists in the land - no answer. The closest I can get to this is that during my 10 hour op (thats a LONG time to be clinically dead!) I suffered a small stroke on the operating table and there is some sporadic small short circuit in my brain synapses to do with my brain interpreting the signals my eyes pass to my brain. That's my theory anyway and no-one has disproved it yet. Anyway, I live with it - its a very small price to pay for being here today and I do get some warning of an attack.

As I said, everyone seems to be affected differently as your body deals in its own way with overcoming and mending the massive assault it has experienced with the drugs used in the operation and the new drug regime that the body now has.

Marion mentioned www.aorticdissection.com It is worth maybe having a look at the forum there as the US has a much bigger base of AD victims than here in the UK and there of course more activity on the forum than here.

Cheers to all

Graeme
Bill and I want to update here to thank you all for this wonderful forum. So many things that Bill is going through are mentioned here, but are not mentioned at all by the docs, nurses, or physical therapists. It sure helps to read that others experienced many of the same issues.

Bill came home about 2 weeks ago, but it has not been easy-going. The night sweats and panics continue, along with a seeming worsening of the nerve pain and loss of left leg use. Today we met a new doc who seems very knowledgeable on the issues Bill is dealing with. (For the past 2 week we had felt rather alone, except for the forum.) Somehow it seemed that everyone expected Bill to be "all fixed" at this point... and Bill felt like a whiner to complain. But the forum helped him through.

We moved a bed downstairs, as Bill has a very hard time on the stairs - particularly going down them. We stacked a pile of clean tee-shirts and towels by the bed. (Thanks Graeme - great help!) And the mood swings/panic stuff we kind of understand now, so are better able to deal with it. Marion - your letter helped Bill and I to adjust to the idea of the time element, I think... meaning, to take it slow, and go with the flow. We are dealing with each day, one day at a time.

Question - Bill was in great pain for the past few days, but the doctor today prescribed a pain med. We are wondering if others were prescribed pain meds, or were just expected to "tough it out"? Seems the docs disagree somewhat on this issue.

Much thanks,
Sue and Bill
Hi again Sue and Bill,

Pain and pain thresholds are such a personal thing, so no one can say if anyone should have pain or not. I learnt early on that the aorta is surrounded by nerves which is why they are so reluctant to mend certain dissections because the result can be paralysis, and in any surgical procedure there seems to be nerve damage, I have some in my left arm and my right leg which was difficult at the time but it gets better all the time and nerves damage continues to repair its self for a long time, you need to do what is best for Bill, he has already been through so much.

At this time so early in recovery whether you need an off the self pain killer or morphine you should have it, “whatever gets you through the night” so to speak. You survived Bill, you are definitely not a wimp you’re a fighter, pick your battles and find your allies.

Kindest regards
Marion
Hi Sue, Bill. Nice to hear from you again! Agree with Marion on this. I had a LOT of morphine based painkillers in hospital and horse size coedine tablets (6-8 a day) for first 4 weeks. As the pain went away - which to a great extent I think was the chest incision pain - (it really HURT) - I downsized the pain meds so that at 6 weeks I was completely off them. Each person has their own pain threshold - so NO macho thinking here (even for a bloke!). I rarely use them ever but I can tell you I was VERY thankful for them then!

I was also intruiged here by Marions comment that 'the aorta is surrounded by nerves' and why certain dissections are so risky because of nerve damage. I never knew that - after 7 years of reading everything about AD, talking to lots of medical specialists etc this is the first time I have come across this information! I guess it goes to show you what a battle we have in education with AD. I had a quick browse on google and found this article
http://ajplegacy.physiology.org/cgi/pdf_extract/104/1/253 (even though it dates back to 1933 it is still current in medical references) which most importantly states that 'their existance is not generally recognised'. Interesting - very. Thank you Marion for a huge piece of info. Maybe this explains why it hurts so much when you dissect??

cheers

Graeme

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