IamA 24 Year old who had open heart surgery on Tuesday AMA!

Why did you choose the bovine valve rather than the mechanical? From what I understand the bovine will eventually wear out, leading to another surgery.

edit: Forgot to add that I hope you recover quickly.

Hey! Great question and it was one that took me a very long time to answer. This will a super simplified understanding of everything: the 3 main options are biological, mechanical, and Ross. The biological valves last 10-15 years and require no blood thinners. The mechanical valves last 15-20 years and require blood thinners. The Ross Procedure trades out your pulmonary valve for your aortic valve and puts a cadaver valve into the pulmonary valve.

I ruled out mechanical almost right away- I'm very active/adventurous and in many ways still young and dumb. I haven't been great about taking all my medications in the past and I didn't want to worry about the downside of possibly breaking a leg with blood-thinners. And I ended up ruling out the Ross because I didn't like the idea of getting a valve involved that wasn't necessary (and the doubled risk of death was humbling).

Fingers crossed I'll be able to get my second valve via a catheter and it will not be nearly as intrusive of a surgery.

Makes sense. I didn't know tissue valves can be used without anticoagulation. Good luck in med school! Any ideas as to what residency you're planning to enter or are you waiting to decide during med school?

Yeah it's a huge perk- I should be extremely close to restriction and medication free once I'm all healed.

You guessed it- waiting until medical school. I studied chemistry/bio in college and my real interests lie in psychology but I think surgery sounds cool... so yeah basically I have nothing figured out haha.

Curious why you were so quick to rule out the Ross. We do it on peds quite frequently at my hospital. I think you are using the word "necessary" a bit incorrectly.

You make a fair point. I weighted the cons of involving 2 valves , doubling risk, and increased surgery time as greater than the pros of greater hemodynamics and potential time without surgery.

It was a hard decision that took weeks and wasn't based off any formula.

Oh and it's slightly better for peds since the autograft (pulmonary valve) will grow in place of the root.

Hey OP, just wanted to say I hope your recovery goes well.

I was going to do an AMA a few weeks ago as a 40-something who just had open heart surgery. Glad I didn't, as your story seems more interesting.

EDIT: cant spel

Hey, I say you go for the AMA- just cause I'm younger doesn't make the story more interesting/applicable. Everyone's experience with surgery is different and I'm sure there will be a ton of 40 year old heart replacement candidates who could learn a ton from your experience. It also feels great to create a timeline of an event that has felt so frantic. Hope your recovery is going well and there's no complications for you!

Wow, glad to see you're doing well! My sister had open heart surgery when she was 15 to correct an atrial septal defect. My question is: how are you healing? Any complications 4 days in?

Hey! Hope everything went well for you sister- how is she doing now?? The healing process has been harder than I ever imagined (and I really tried to get a realistic view of what it was going to be like). There's so many mood swings. Day 2 I found out there was fluid in my lungs and I would need a procedure to correct it. I needed conscious sedation to put a chest tube in. When I woke up I had memories of freaking out, pulling off my mask, yelling at the doctors, etc. I thought I died. When I came to I found out I made all of it up in my head. Due to fevers they've been checking cultures to make sure I don't have infections daily. If those came up positive I don't know if I could handle it. My mom was an ICU nurse and hasn't left my side. She's been an absolute fucking trooper and has basically been my 24/7 nurse and emotional support. You have no idea the compassion it takes to be a nurse until you really see it from this side and she has been what has allowed me to get through the crazy bumps these major surgeries entail.

My sister's doing just fine now, except for the fact that her valve correction didn't fully heal, so she will have to have more surgery. However, that won't have to happen until she starts planning on starting a family. My sister's nurses were a dream, and her doctor was absolutely outstanding. Rooting for your full and speedy recovery!

Glad she can start a family first to have some buffer time. The idea of learning about another necessary surgery in the near future will be very difficult to swallow. Your sister needs to know she is a real trooper and I hope the best for her.

Not to take away from your AMA but I also had surgery on Tuesday, mine was reconstructive beast surgery post cancer, we're kind of surgery twins. So the best surgery post question is...have you farted yet? Also the most satisfying poop you'll ever have in your life is post surgery poop, because of the anticipation and it's like the only time in adulthood that someone is asking about your poop. Good job surviving surgery, surgery twin.

Doesn't take away from it at all! That's awesome you're doing well- you're surgery/condition looks much scarier than mine I'm happy you're doing well.

Farted for the first time day 3. Was a 5 second squeaker and it's truly amazing to be surrounded by adults who are all so happy when you fart. Since the they've all been long winded, loud, and smell-less. They're the farts every person dreams of. Will definitely have to get used to reality post hospital haha. Haven't gone #2 yet.

Good luck with everything moving forward!

Bovine valve, meaning from sheep or cow, correct? Why did you chose that option?

Almost got it! When someone says tissue valve they mean either a sheep or cow valve. Bovine means specifically cow and porcine specifically means pig. I put my reason for choosing the tissue (bovine) on the question right above you.

Why are you so sexy?

Symmetrical face features, golden flowing locks, and a strong jaw line. Next question.

Haha but real talk thank you I appreciate the compliment.

I also have a bicuspid aorta and I'm 28 years old. How long did it take from going from being ok to needing surgery? Is it a slow decline in function over the years or can it be like this years checkup is fine with just minor leaking (as mine has been for since forever) and then suddenly you need surgery?

Hey good luck with everything! If you're leak isn't serious you can last a really really long time with a bicuspid aorta.

What was weird about me is I have been asymptomatic all through-out the diagnosis. After being told I ran a tough mudder, worked out regularly to exhaustion, did college completely unrestricted.

I was first told about in 2009 the week before I started college and was told I needed surgery within 3 months. Went to John Hopkins for a follow-up and they said my initial diagnosis was wrong, and had a regularly scheduled echocardiogram every three months. Then it moved to 6 months, then it moved to once a year. Everytime it felt like the valve and heart was going better that I had kind of expected to put it off until after med school. But it all finally came down on random checkup and the doctor finally said it was time to get it done.

My advice is find a cardiologist you feel especially comfortable with and make sure you get checked up yearly.

Owch! How bad's the pain level?

That's a really tough question- pain is so subjective. The surgery really is an emotional roller coaster you can't really prepare for. Every difficult "hump" of recovery has to be taken individually or else you'll emotionally crash. I think fear played a much bigger role in the pains I experienced than the actual sensations themselves. I have an incredibly supportive family and a mom/dad in the medical field. This alone has made recovery 1000x easier- my parents know what to expect, what to say etc. My mom didn't freak out when I looked at her and said "mom I'm scared". When fear is low pain is easy to deal with, when you're scared every pain feels like torture. I know my appreciation for people in the medical field grew substantially. The correct way to deal with patients isn't built in human instincts.

I'm glad you're doing ok! good luck with the rest of this adventure.

subjective question, but how were your anxiety levels leading up to this procedure?

Hey- for me they were essentially zero. I've been on summer since finding out- I've been exercising and meditating daily and sleeping 10 hours/night. I've personally always been good with dealing with anxiety about future events and felt like I took more of the role of tampering my friends'/families' concerns than processing mine. That said my anxiety during the procedure has been a roller coaster. I wrote a daily log on one of the posts that show just fear and anxiety levels are up and down every hour of every day.

Get well soon, and good luck in medical school! Since I need to ask a question (it is an AMA after all), how's this:

Did your decision to enter medical school have anything to do with your medical condition? Wanting to give back?

Hey! initially not at all. I've wanted to do medicine since before high school. I haven't been particularly gun-ho about it recently like a lot of pre-med kids but I never developed a reason not to do it. Now after going through the surgery you amass a ridiculous amount of respect for people in the medical profession. What they give is incredible and it's just wholly incomparable to most progressions. Makes me feel very happy I'm on the path.

I have two friends with the same scar! Curious, is it going to leave an indentation in your chest?

From my understanding it's not as much an indentation as it is a 4-6 inch red line down from your chest. I have no idea how it's gonna end up looking aesthetically.

Congrats on the successful procedure and welcome to the open-heart surgery club! I had surgery to correct transposition of the great arteries when I was 5 days old (25 years old now).

Now for questions:

Moving forward, what kind/frequency of check-ups can you expect? I have annual echocardiograms.

Will you be concentrating on a particualar field at medical school? Has this experience made you want to pursue a career in cardiology?

Oh sweet, hope that hasn't caused any further symptoms and all you have to show for it is a cool scar.

I expect to end up doing the same- after the initial 2 week, 6 week, 3 month visits I'll be on an annual echo schedule.

Hmm haven't had enough time to process everything so far- I haven't fallen in love with cardiology but also not driven away. I'm looking for the specialty with the best quality of life and it looks like cardiologists really have to have their heart in what they do.

Was...was that pun intended?

;)

both me and my brother had open heart surgery (for different reasons) and we still have scars. I was wondering if you as an adult were given any options to reduce or even remove scaring?

Nope not yet, I'm not terribly worried about the scar- I don't think people will be attracted to it but it's not repulsive either. We'll see if my opinion changes once I really live with it.

I'm going to be supporting my partner through his baby's OHS in a couple weeks. Any advice you wish your mom had given your dad to best support you AND her?

Hey, first of all good luck with everything. It's a great question-you're in a much more complex situation than what I encountered so I won't try to step out of my boundaries for what I can speak to. Talking to my family the recurring theme was feeling entirely helpless throughout the procedure. My best advice advice is to sit down with your partner (and every other person who you can talk to who will be involved in the surgery) and have an emotionally unattached conversation about what role he/she wants you to play, and for you to take what he says very serious, while being amenable to changing your role. I personally only wanted my mom to play the emotionally supportive role and had to tell my dad a few times that even though I love him he isn't going to be my person this time. I also changed midway through the procedure about how much I wanted to be involved talking to the doctors. I was able to have an unemotional honest conversation that has since dictated their involvement. So even though it's just basic life advice, try to be unemotional when deciding your actions and be open to change. The fact that you care enough to be thinking about it and post about it makes me confident you'll be an amazing support.

Did your Dr. have you on any pressure meds throughout your years before surgery to prevent further pressure on the valve ?

I was prescribed lisinopril. I was horrible at taking it, the doctor said he saw improvement in my valve after a 3 month session I didn't take it once. So I decided not to take it. Potentially stupid, you kind of feel invincible in your 20's. Will definitely change my habits moving forward.

Were you technically dead? Did you have an NDE?

Never dead, so no experience! I'll tell you a secret though, there's no white light at the end of the tunnel, you're just dead! All that you can hope for is that you go after a happy fulfilling life.

I hope you have a speedy recovery!

How were you originally diagnosed?

2009 bicuspid aortic valve with moderate insufficiency. Later re-diagnosed with mild which in time turned to moderate. Get your annual echoes if you have a heart problem.

So what happens if you sneeze? Any risk of injury?

Haven't sneezed yet. Thank baby Jesus, it would have been indescribably miserable the first few days. I've heard it's dangerous but haven't heard specifics.

Why is there a bandage on your neck? Is that a tube going into your collarbone??!!?!!

That would an IV going into a neck vain!

are you still coming to se asia? x)

Hopefully next year I'll be able to go on some med school program and get it paid for while I making pretend to save small countries while I real havoc on their structure.

I've had aortic valve stenosis and insufficiency since birth and will likely need a valve replacement in the nearish future as well.

Did you ask the doctors to record the procedure for you or if you could keep your old valve preserved or anything? I think it'd be cool to watch my own surgery and figured you being a med student might have a similar interest :P. I collect oddities such as human bones and would like to keep something of my own if it has to come out, just curious what they said about it if you asked haha.

Haha very interesting. I wanted to ask my surgeon to take a picture of my heart during pre-operation but didn't want to bother him the day of. I'm curious too, it would have been interesting albeit freaky to watch my own procedure or have my own body parts.

Hey!! Glad you're doing well. I had my own OHS on July 12, 2013 to repair an atrial septal defect and mitral valve repair. My sister has also had 3 open heart-surgeries, the first when she was 3 for the same repairs as mine and then she had a Ross at 14 cause she got endocardritis and then another at 21 because she rejected the cadaver valve and got the bovine. She is now 35 and hasn't needed the replacement since. She even had a child who's 5 now who unfortunately also has the same defect but is a candidate for having it repaired through cath. So for us it's genetic. Do you know if your heart issues are genetic?

Hey so sorry about that, glad everyone sounds like they're doing okay for now.. it's also a genetic component for me. My grandpa had a bicuspid aortic valve (bav) and aortic insufficiecy. My mom has a BAV (mild/moderate insufficiecy) and it's what caused me to require the procedure. Sister don't have it which is amazing we just have to hope ZenArcadeJr and la_mariposa_jr steer clear.

This is slightly off topic, but any tips/anecdotes on becoming a good medical student?

Hey so I'm starting in August so it would be pre-emptive for me to give med school advice but I can speak for pre-med. If pre-med classes are hard for you, don't kid yourself. Some people aren't cut out to become doctors and that's okay. In my opinion when people make the decision they only want to be in the medical field if they're going to be a doctor then they're not really interested in being in the medical field. Consider being a nurse, psychologist, lab tech, research coordinator, physicians assistant, physical therapist.

Basically what I'm saying is I didn't get along with most other pre-med kids haha, make sure you still have a life when you're going through college.

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4 days post surgery and still hanging in there, Sorry can't answer the second question and won't ever be able to!

Have you ever done two girls at the same time?

Haha I did say AMA I guess. Freshman year I was with 2 girls at the same time but one didn't sleep with me during the encounter. I've always counted this as 2 girls at the same time and my friends never have.