What were my odds?

Posted by martinkennot @martinkennot, Sep 12 3:02am

I had no idea.
We drove to the hospital at 1am, triaged immediately, multiple tests and scans, and a surgeon on the way by early morning. I had a bunch of issues including a 6.5cm aneurysm and a both-ways dissection the full length of my aorta. It is truly a miracle that I am even here.
There was no discussion, no options, no waiting, and no information. They didn't tell me what was happening or what issues I really had. Or maybe they did? Or maybe they thought that someone else had told me how bad it was, and that I already knew. Maybe they thought they didn't need to say too much, so they didn't.
I actually thought I was going home.
So, now I have this constant debate with myself... would it have been better to know in advance, or to not know? What would I have done if I knew a month or two or six in advance? Or would it have been better to not know?
For my family, it was terrifying. And sitting there in the emergency department, the idea of not being around had not even crossed my mind, and before it could I was off being prepped for the most existential experience I have ever had. I was numb and the gravity of my situation hadn't worked on me - one test moved on to another so quickly that I thought the eight hours until surgery was only one.
So maybe with the knowledge of a possible surgery, it would have been better to have the time to plan and to take care of some things: personal and financial. And medical - in advance I could have had options and a medical plan. It would have been better to have the time to change things.
I still don't feel how extreme my chances were - I have run some numbers (and I know I shouldn't but I do); the success of surgery, the success of the recovery, the estimated chance per billion that I would have the issues that I had (and still have) and the even smaller chance that I would have a positive outcome. A nurse called me at home two weeks later, and I told her that in hospital I was worried I would have a stroke. She said it is common. Wow. I had open heart surgery and a second surgery the same day to remove some blockage. Wow. (So many "wow".)
My aneurysm was left too late, and this probably caused the complete aortic dissection. I don't know how long things were getting crazy inside my chest. All the combined issues I had were so rare that the hospital doctors were inviting med students to come and listen to my heart. They would say "This patient had a Triple A" and then chant off a bunch of other things, "type A, type B, dissection, root, valve...". The nurses changed shifts and just referred to me in their handovers as "the triple A patient". I was their show pony for two weeks - I felt good about that but on reflection I think the notoriety was only a sign of how bad it could have been for me.
That morning, they weren't going to let me leave the hospital.
Nup.
Oh yeah, I almost forgot. That night we called the ambulance? It never arrived. After waiting, my wife drove me to the hospital - while I stupidly insisted on staying at home. The car ride was a (another) risk that could have ended badly. But I actually think if I had stayed home and waited, things would have been much worse.
What were my chances?

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okred | @okred | Sep 12 12:40pm

Wow. I truly believe you are a miracle. The good news is, you are now aware of the issue and can be monitored regularly. I can imagine your experience has left you with a bit of anxiety. I know I have some and mine hasn’t ruptured. Hang in there. You are still here for a reason. Live it to the fullest. :-))

suzie71 | @suzie71 | Sep 13 12:24pm

Reading your comment, but I did not see if you were aware you had a aneurysm to begin with. I have been monitored now since 2020 for a Abdominal Aortic Aneurysm to check how fast it is growing. Last check it was at 3.9. I am due for another check in April. I know if they tell me its time for surgery, that I will be very anxious. It sounds like in your case you did not have time to think about it. In some ways that could be a good thing, but the best thing is that you were able to have it taken care of. You were blessed that you did not die from having a dissection of it. I hope you are doing well since the surgery. I as many others I am sure would like to know how you are now. Those of us who are still in watchful waiting do not know what to expect. God Bless You.

martinkennot | @martinkennot | Sep 14 9:17am

In reply to @suzie71 "Reading your comment, but I did not see if you were aware you had a aneurysm..." + (show)

Hi Suzie
I had no idea. I see this is as both a blessing and a curse. I had an aneurysm but I didn't know it. It was 6.5cm and far larger than anyone would have let continue. I was in a lot of pain and I knew something was wrong. But what? I was scared and knew that I was not going to survive.
With no warning I could have left this world almost instantly. The odds were already greatly stacked against me. And my leaving would have devastated the lives of many others. But I >did< know something was terribly wrong and that was extremely hard for me.
With warning I could have prepared for the eventuality - say, at 4cm started on medication, at 4.5cm began to plan my immediate and long term future, and 5cm or more I could have had some time to circle the wagons and alter my life. At every step I guess I could have had more lead time to make sense of my life and get things on track.
But my chest exploded and my aorta ripped from my heart to my legs. I had 5 minutes before surgery to decide what kind of valve I would get. I didn't even know at that point that I was going to have surgery!
For the surgery, there was no guarantee of success or recovery - that's how bad I was. And to make it worse I did go back into surgery a second time that night as my BP had dropped to 50. I didn't know any of this of course but it sent my family into a spiral that they have never truly recovered from. I think it was first 8 hours and then another 2 hours of surgery to fix things. That second one was the worst because my wife had to make a decision without me.
I wish that I had warning, and time, and a plan, and a doctor, and a lot of things.
By some miracle I survived. And the skills of a lot of people kind of helped 🙂
Suzie - thank you for asking. I am doing well - I still have the complete dissection - that couldn't be helped. And heart failure.
But after a year I am a little weaker than before and this is the new me (ta da!) - I just [ulld over for a while, got some new parts for the engine, and now I am back on the road.
Maybe instead I should talk about recovery? I came through it and with no time to prep I learned the hard way about a lot of things. I have covered this in another post - what to do after surgery so we can plan now for better and faster recovery later.
PM if you'd like. Happy to talk some more.

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