Aortic dissection & aortic aneurysm information support group

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

Hi to you all, am so glad I found this group, have been looking for one for days....  My story is a long one but will try and be as brief as possible.   In 2006 I was diagnosed with cancer in my chest wall, of unknown primary, all that were in my chest were met's.  I was given 6 - 12 months to live.  I was started on palliative chemo and radiation, both wreaked havoc on my lungs, my lung capacity is low.  I did well enough on the treatment, but was not prepared to die and so went on to Low Dose Naltrexone,  and have been helped along the way by a  dr Zagon in America. Here I still am over five years later!!   It's an off label drug so hard to get a script but I eventually did, and hence here I still am.   Just before the cancer diagnosis I found out about this aneurism in my abdomen, the least of my worries at that time.  However, it has started to grow and is now 5.6, so puts me in the at risk group, and freaked me out.   I am presently fighting with the hospital to have it treated, and all they tell me is the bad things that can happen, i.e the Evar 1 trials showed a lot of deaths, however, the Evar 2 trials showed less - but not why, that if repaired it could bleed, that outcomes for this op' are poor, never a mention that if the thing blows I have had it anyway......On it goes!!  I have forced them into testing me by complaining about them, not an easy ride on your own. The anethetist threw his hands up in a sulk, and wrote to my Dr that I asked too many technical questions that he could not answer, what?????    Next week I get my heart tested, and it will only take one of them to say my heart is not strong enough - -  to put a spanner in the works - albeit I had heart tests of a different kind a few weeks ago and was told all was well.  I have ordered my last six years hospital records and all scan and Xay reports in anticipation of a battle.  I am really needing some help here and would appreciate it if you can tell me anything, ie about the operation, survivabilty, palliative care if there is such a thing - anything......

Thanks for taking the time to read this.........

Celia

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Comment by Celia on July 27, 2011 at 17:04

Hi Graeme, slowly I am making my way around this site, plus I have had computer problems which is why I am late in response. I had a stress echo on my heart today, and the scan results have all been sent to the vascular Dr, and now they shall decide if they will operate on me, or if I shall be left for a quick passing!!:-))  The risks are so high either way and I wonder why better procedures have not evolved since the Evar trials, it all sounds pretty grim to me....  I have battled cancer for over 5 years, and now this, this I could do without....  Anyway, I wanted to thank you for your kind comments, I guess I am looking for some good outcomes, 'cos all I have heard and read so far is bad!    I will never foget what that anaethetist said to me, or the way that he said it, and yes the fight goes on!!!!:-))

Celia

Comment by Graeme on July 25, 2011 at 21:21

Celia,

all i have to say is i have the utmost admiration for you. It is NOT easy fighting both the bureaucracy and the medical professin in this country, and yes I woul be pretty p**ed off by the anaesthetist as well. Luckily mine all happend at once and i lucked out on diagnosis and one of the best medical teams in the world. Sometimes its luck - and fighting like hell that gets us through all this. Keep on fighting and as the song in Riannas new album song says - "dont let the b***eds get you down!"

 

cheers

 

Graeme

Comment by Celia on July 25, 2011 at 16:56

Thanks Elaine, I can see I am going to learn a lot here, what happened to you?  Was yours aortic?  SCARY!!!   There was a woman at the cancer clinic had a thoracic aneurism, 8.4, it was bleeding, they are doing nothing about it, can't get that out of my mind, dunno how far on the cancer was, but how terrible, to let someone go on like that...

Thanks again

Celia

xxx

 

Comment by Celia on July 25, 2011 at 15:52

Thanks so much Elaine, I am getting over the 'frantic' and now in for a fight, but I know it's not going down well at the hospital, we are supposed to do as we are told, and I won't!!  One funny thing, the aneathatist wrote to my Dr, who would not read the letter out to me, but I saw just enough of it on his computer to see he has written - this patient asks too many technical questions for me to answer -  so that's what I am up against.  So glad to have found you all......... I know what dissection means, but what does it mean in this context?

Celia

xx

Celia

xx

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