Aortic dissection & aortic aneurysm information support group

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

My 1yr 10mnths older broher died from this in 2009, he had a Aneurysm/Dissection in 2001, then had to have further surgery a week before his 60th Birthday November2009 , he died on the operating table, he had explained to me that it was genetic and keep an eye out for signs, told me what to expect if it happened! On April 13th 2015 I was Oakham, Rutland, UK and it happened. I knew what it was straight away. 999 Ambulance to Leicester Royal, then transfer to Glenfield Hospital. I had a former neighbour/friend (A Doctor/Consultant) who had said that LRI/Glenfield had best Cardiac surgeons in the UK, so when Ambulance crew offered me Peterborough or Leicester it was an easy choice! Over the following week they tried to get my BP down but without success, so surgery or die anyway, I was so drugged up I dont remember that time at all, the docs told my family a 95% chance I would die in surgery for an Aortic Stent... Surgery on 25th April and I lived... I think Kidney failure was the first main problem, then after surgery my left lung collapsed. I have been like so many people on here so affected by all this! It is now July 21st and still no energy, very weak and tired most of the time, some memory loss and still some confusion! Yet I read some stories on here and feel Very Very Lucky! I have to say I had no post op briefing from my surgeon, he did brief my 3 older sons and they told me quite a lot, whatever, I need to know more about my future, I was informed 6 - 9 months to recover fully, I should get another 7+ years, but nothing about any longer term affects on me as a person. What if any limitations, can and cannot do? Since my discharge from Glenfield on 20th May 15, I managed another 2 days in Kettering General Hospital, sent in by my nurse on 23rd May, I was having severe jaw pain, I thought dental probs but was told this is a sign of Aorta Probs as well! In Kettering one doc wanted me to have a blood transfusion, another said defintiely not, a call to Glenfield tem and they said dont, taking the slow boat to a normal blood count is best! I was released on the 25th once they had done a couple of CT Scans to check all was OK. So its Iron pills, Oily Fish, Liver, Cabbage etc diet right now, and its still 40% low!! I also get some small pains/irritations in my chest, almost certainly Heart/Aorta area, I dont know what these mean? Any ideas anyone? As I was not told what to expect I do not know? And where they entered to re inflate my left lung, I now have fluid there this last week or so, at the top of my rib cage and under my armpit, got to go for a scan next week! Again, no idea if this is normal or to be expected?  I suppose it is life goes on, and I am still here. Finding this site was good as I have been able to read other people stories and know that I am not alone, and can look forward to my 64th Birthday next month, a lot more luck than my brother and many others have had, so I am Very Very Lucky.

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Comment by Kimberlee Jones on August 25, 2015 at 12:27

Wow that little bugger was really trying to travel that good all aortic highway. So glad the doctor were able to stop that road trip. LOL  Sounds like you were once a busy busy guy. You can be again, not as much as before but here is the great thing, you get live. I don't mean you're alive(welll...you are) but you get to live, being alive is never enough. I wish you great luck and stay strong, keep living.

*hugs*

Kimberlee

Comment by David A Palmer on August 25, 2015 at 11:17

Thanks Greg, Kimberlee and Graeme, and apologies for long delay replying - you know why :-) - my update, I had a meeting with consultant yesterday (24th Aug 2015), learned some more about my surgery and my EVAR stent. It extends from just after my left arm subclavian artery all the way to my abdomen! That little bugger was going places and had to be stopped very quickly from what I gather, spoilt a Saturday night out for the surgical team? Onwards and upwards...

I had read everyones story on here with great interest, I have been trying to educate myself on what my bro died from and I now have! I have learned that every Aneurysm and every dissection is different and affects people in different ways. I also now accept that I am not going to be The Same as I was before the dissection and never will be, just to improve will be a long slow process. One of the problems it has thrown up for me is a delay in left hip replacement surgery and right shoulder rotator cuff repair (3rd time left shoulder repair, yes I had a Hi Adrenalin Lifestyle once, Aeroplanes, Motorcycles and cars!), the hip pain stops me from getting as much exercise as I would like, it is a competition between left hip PAIN stopping me before getting out of breath and uber tired from dissection and surgery! So time to recover and get the hip replaced and the shoulder repaired, another 3 months before I can fly again, (as a passenger I used to commute LHR to LAX 8/9 times a year), only now saying to start out on short haul for a while is preferred? Getting my pilots license back might be quicker :-) ?  Next stop is to see the surgeons who did my Evar Stent op, Cardiac Consultant who has been my overseer from day one of dissection is surprised they hadnt hauled me in way before now for a checkup, I told him me too! He is going to find out why and let me know? And I at least made it past my 64th on Aug11th. :-) Good luck to everyone on here.

Comment by Gregory Smith on August 14, 2015 at 9:33

David, it is hard to begin with but it gets better. Last week I made it to 69, 5 years on from my AAD. Read my blog to see the things I've been able to do since then.

Comment by Kimberlee Jones on August 5, 2015 at 12:15

HI David! I am sorry for your loss. You are not alone, In Dec I will be 12years out. I only dissected from aortic valve to mid arch.  I did however have to have an emergency c-section prior to dissection surgery.  Aortic Dissection is not a death sentence, enjoy life.  You have plenty of it left to live.

*hugs*

Kimberlee 

Comment by Graeme on August 4, 2015 at 11:35

Hi David, hang in there.. No you are not alone... I am 12 years on now from my massive Type A dissection and found out last year that it also dissected all the way down to my Illiac arteries as well... so full Type A and Type B!  Keep positive and live every day!

Cheers Graeme

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