Short Bio:

So I am thirty years old and learned in early 2017 that I was likely to need surgery to repair a thorasic aortic aneurysm caused by a previously undiagnosed valve disorder known as a bicuspid aortic valve. The surgery was finally scheduled and done on January 4th, and now, almost exactly a week later, I'm sitting here on Reddit feeling well enough to do an AMA.

I'd write up something more comprehensive as a basic bio, but I'm still pretty damn tired, so I'll just let your questions guide what I talk abut.

My Proof:

Comments: 995 • Responses: 24  • Date: 

Clvrusername808340 karma

Good luck! I had open heart surgery (aortic valve replacement) in 2016 and that recovery wasn’t as hard as I thought it would be. Worst part was learning to stand up using my abs and legs rather than pushing myself up with my arms as I was in the habit of doing, but as you know by now that’s a big no-no when you’ve had your sternum opened.

How long were you in ICU?

MareCimmerium293 karma

Surgery was complete by about 630pm Thursday, I first remember being conscious around 1230am on Friday, then was out of the ICU by 1230pm Friday. I moved through the ICU really fast, but basically because I didn't sleep at all.

fiverandhazel193 karma

How long will be your recovery? And will you have any restrictions?

MareCimmerium382 karma

Can't drive or lift more than about 10 pounds for the next 4-to-6 weeks. Then nothing more than 25 pounds out to about 3 months. After that, I should be good to go for the long run with no long term restrictions.

explodyhead22 karma

I've got a bicuspid aortic valve & aneurysm too. The surgery and recovery absolutely terrifies me. Is it as awful as it seems?

MareCimmerium35 karma

It really isn't, it hurts a lot but you can get thru it. The worst part is over pretty fast.

Misha_Vozduh16 karma

Did they explain why you can't lift stuff? Sudden spikes in blood pressure?

MareCimmerium50 karma

It's because they have to saw through the sternum to get to where the work needs to be done. The two parts of the sternum are then just wired back together, so they're pretty loosely held together early in the healing process. Lifting too much weight could cause the wires to come misaligned, or other bad things.

Cowajc00185 karma

Do you like grapes?

MareCimmerium159 karma

I don't, love wine though.

taotech126 karma

How are you feeling? Any spasms during healing? I had a heart attack due to Spontaneous Coronary Artery Dissection, at age 37. Are you in a support group? I found that to be the thing that helped my anxiety the most. Did you have open heart at the Cleveland Clinic?

Welcome to the group of people you never asked to join! You survived. now, take care! <3

MareCimmerium93 karma

I'm actually feeling pretty good except for what I assume is temporary pump head combined with a serious lack of sleep.

I haven't joined a support group but I've made some posts and read plenty of patient stories of people who've good through similar operations.

Also, I did mine at MGH.

Hope you're doing better these days!

mart1373109 karma

Did the surgeon/anesthetist say any witty, concerning comments as you were being put to sleep? E.g. “Ok, count back from ten as I check WebMD on how to perform open-heart surgery.”

MareCimmerium71 karma

Lol no, they didn't even do the count back from ten thing.

ChillyDurden00761 karma

What will your recovery look like? Did you have a valve replaced? If so, what was it replaced with (mechanical, human, animal)?

MareCimmerium71 karma

Posted the recovery schedule in another reply, as to the valve replacement, I was actually really lucky. Even though the aneurysm is technically caused by the same genetic disorder as my bicuspid aortic valve, the surgeon thought beforehand, and confirmed during the surgery, that I'll be unlikely to ever need a valve replacement.

ChillyDurden00723 karma

Thanks for the reply! Do you mind if I ask another question? How do they suture an incision like yours? My mother had surgery on a neck artery and they sealed the incision with this crazy, clear plastic-like substance that all but disappeared in about two or three weeks.

I’m glad to hear you’re doing well.

MareCimmerium33 karma

The sternum itself is closed with a metal wire, as for the incision, there's just these fall-out sutures which just come off after about two weeks.

ZappaBaggins43 karma

I'm a cardiovascular perfusionist, the person who would run the heart/lung machine during your surgery. It isn't uncommon for other health care professionals to not know who we are or what we do (as of 2018, there are somewhere around 3,800 of us in the entire U.S.). So I always wonder if our patients know we exist or what we do. So all of that said, did your surgeon describe the heart/lung machine to you or the role of the perfusionist? I'm just curious. I kind of like the anonymity of my job.

MareCimmerium9 karma

No, I didn't get much of an explanation of the perfusion aspect of the surgery, but I'd done enough research on my own to have decent sense of how it worked, going in.

squishynurse41 karma


MareCimmerium50 karma

Gorgonzola, no question.

BlackHawk810040 karma

So, how does your chest feel?

MareCimmerium76 karma

The incision itself doesn't hurt and really, has no feeling at all. The broken sternum ranges from mildly sore when just sitting, to pretty damn sore when moving, to incredible, massive pain when I cough or sneeze.

IrrationalRealist48 karma

I work on a cardiovascular floor at a hospital. We give our open heart patients a heart shaped pillow to hold to their chest when coughing to reduce pain/discomfort and to hold when getting up as a reminder not to push or pull with their arms (you absolutely don’t want your incision to dehisce!).

MareCimmerium42 karma

I got a pillow like that, it's definitely helpful but coughs still sting like hell.

firenoodles29 karma

Don't forget to frequently use your incentive spirometer! It prevents atelactasis and pneumonia.

What's one thing you wish your nurses did to help you recover?

I work on the SICC, with patients fresh from the ICU after a Cardiothoracic Surgery. I hope you heal quickly! Thanks for doing this AMA, it's interesting to read the patient's perspective.

MareCimmerium18 karma

The incentive spirometer never leaves my side! Using it constantly.

Mass General was absolutely outstanding, so there's very little to complain about. I wish they were a little bit more insistent on me using the pillow to the chest while getting up from the bed, to prevent me from "cheating" a bit and using my elbows to help get up. Intellectually I knew I shouldn't, but when getting up out of bed seems like the most difficult thing in the world, it's hard to keep that in mind.

calaber24p39 karma

From someone who had a valve replacement at 2 years ago when I was 22, wishing you the best in recovery. I had a bicuspid aortic valve that was at risk for an aneurysm so pretty much the same as you. I bet youre glad you are out of the hospital. I was in there for 7 days and it was hell. Things get easier by the day, especially since we were probably the youngest people in there by decades. (or at least I was). I actually still have discomfort from the wires used to heal the chest, so I will probably get those removed in the next few months, but it isnt too bad. Hope you arent in too much pain, the first few weeks sleeping and laying down can be a real pain. Did they repair the valve or replace it completely?

MareCimmerium27 karma

They actually didn't touch the valve, just the aorta. The surgeon was confident that I'd be unlikely to experience valve issues in the next 15-20 years.

The wires haven't been bad so far, but I guess we'll see.

Sjefkees19 karma

First off, congrats on the successful operation.

Second: apologies in advance for the selfish question related to myself, but it's an AMA and you have valuable experience so I hope you'll forgive me. I'm also 30 and I have the same sort of valve. My dad got his replaced in his mid 40s. His doctor (and now also my doctor) told me that a lot of people have these valves and only a small percentage of those people need them replaced. Did you hear something similar? Were you aware of this condition before this event?

MareCimmerium16 karma

My understanding is that a relatively low percentage of people with bicuspid valves will eventually need surgery to repair or replace them. Hell, I had my valve disorder cause a serious aneurysm and I still likely won't ever need my valve replaced.

AdClemson14 karma

Can you describe the feeling once you gain conciousness post surgery. What does it feel like?

MareCimmerium43 karma

I remember waking up with the breathing tube still in, and being very pissed off about it, but it was out pretty fast. From then on, I remember someone telling me that the surgery went well and that I would be waking up more fully soon. I remember wiggling my toes to make sure I could still feel my legs. As my eyes started to open more, I could see the analog clock on the wall but absolutely could not figure out how analog clocks worked. By the time I figured out clocks again, I was pretty much back to normal-ish.

zoey806813 karma

How are your dreams?

My dad had super crazy dreams after his bypass. The doctor actually warned him about it.

MareCimmerium11 karma

I haven't had much in the way of weird dreams so far, but it is so hard to shut down your brain to sleep in the days after the surgery. Maybe it me, but my brain would get locked into these weird thought-cycles, thinking absolute nonsense, and I couldn't get to sleep until it was over.

adamw1028 karma

Wow! I’ve been diagnosed with the same issue since birth. 22 now and doctors say I’ll need valve replacement surgery in about 3/4 years. How was everything? Wish you all the best in your recovery.

MareCimmerium12 karma

Thanks, appreciate it. I'm not going pretend that it didn't suck, but given that my heart was stopped literally a week ago at this moment, I'd say things are going pretty well.

aigsup12346 karma

Did the doctor tell you to cut back or add something to your diet?

MareCimmerium8 karma

Low sodium for now, to reduce post-surgery fluid buildup, but after that, back to normal.

joalck4546 karma

What was your last trains of thoughts before going under ? Also as this would be a very intense surgery, did you get any doubts of not waking up again?

MareCimmerium6 karma

Nah, no doubts, but granted they have given you a pretty decent dose of Atavan or something similar by that point.

kralim5 karma

Any family history of this or any heart related things?

MareCimmerium9 karma

Adopted, so...

mattyirie2 karma

How was your experience from a psychological perspective? And mental trauma?

MareCimmerium3 karma

Draining and frustrating, but not much more. The lack of sleep is the biggest problem, I haven't slept much more than an hour either of the last two nights, and it's starting to take a toll. But I know it's very common,and will pass.

Goat_6661 karma

Favorite NHL-team?

MareCimmerium2 karma

Bruins, with a Johnny Gaudreau-sized soft spot for the Flames.