[AMA] Lifesaving Open Heart Surgery

It has now been almost 3 months since my lifesaving Open Heart Surgery.

I'll keep this as short as possible but I'm a 24 year old male born with congenital heart disease. I had an operation when I was 5 days old to fix my coarctation of the aorta (narrowing of the main blood vessel from the heart). 24 years later I underwent open heart surgery to repair an aortic aneurysm (abnormal enlargement of aorta) and repair my bicuspid aortic valve. My ascending aorta was well over twice the normal size and was at a heightened and ever increasing risk of dissecting.

In order to perform the surgery and reach the heart, the surgeon was required to cut open the sternum. My heart was then stopped using a chemical agent and I was placed on a heart-lung machine (Cardiopulmonary bypass). This enabled the surgeon to perform the surgery with a blood-free and still heart. After the surgery was complete, my heart was restarted and the heart-lung machine disconnected.

AMA

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  • +9

    Medical science really is amazing! Glad it went well and you're with us today. :)

    What's the upkeep like in terms of medicine/appointments/physio etc? What can you not do anymore?

    • +11

      Thank you :) It truly is amazing, especially the advancements made in the last 4-5 decades.

      I am currently in cardiac rehab and do physio twice a week. Mainly geared around gaining strength back in my chest (while the breastbone heals) and increasing the overall heath of the heart. I have seen the surgeon post surgery and my cardiologist at the 8 week mark. As everything has gone to plan so far, I only need to see the surgeon in 1 year and the cardiologist in another 6 months.

      I had to be very careful in the first month of two while the sternum was healing. I couldn't lift anything above 1kg or use my arms to push off anything. Nothing that would put stress on the sternum etc until it healed. Getting in and out of bed was not easy but I got better everyday. The only major thing I can't do now is lift heavy objects.

      • +8

        I'm glad you replied. After 11 minutes I was starting to think that the surgery wasn't that successful after all.

      • -2

        Mainly geared around gaining strength back in my chest (while the breastbone heals) and increasing the overall heath of the heart.

        What kind of exercises are they? Sounds good for everyone.

  • How did they diagnose at 5 days old that you had a problem with your heart?

    • +2

      I had difficulty breathing and my skin was pale. They then went on to do further tests including an echocardiogram to discover/confirm the defect.

  • +7

    I used to be a theater nurse 8 years ago assisting for open heart (by-pass) surgery. It's an incredible procedure to make your heart work as new again. Good on you OP. Wishing you all the best and always keep healthy.

    • +4

      Thank you. Yes, I actually met a nurse in ICU who told me she wants to get back into theatre work for open heart surgeries because it fascinates her so much. Amazing what a team of medical professionals can do

  • My understanding is that heart attack patients can experience periods of depression following their 'events'. Does the same apply in your case?
    If so, were you informed about the likelihood, and what to watch out for, what to do etc.?

    • +3

      Yes it applied in my case as well. I was warned about it and given advice/ support in hospital as it's common. It wasn't easy at home and there were days I was experiencing depressive symptoms when I usually rarely do. I don't think the situation of covid-19 and being out of routine/ stuck at home helped too much either. They did provide support services and possible use of medication if needed but I just talked it through with friends/family on days I was feeling symptoms.

      • +1

        Did you see anything on the other side ?

      • Have you experienced depression before? If so how did it compare?

        • +1

          I have yes. Only once in my life where I can say I was actually depressed. It was when I was 16 years old and lasted for many months. I wouldn't compare my post surgery depressive symptoms to it however, as it was far too short and less intense. I also had great support with this surgery and could somewhat recognise when I needed to talk or clear my mind

          • @slosh: Thanks for the reply. Soon a lot of me inside will be removed so the complications and quality of life post op scares me. Post depression is terrifying.

            • @Clear: It might help to start working with a mental health professional who specialises in that area now, to help you to reframe your thinking and start to practise strategies for managing your fear and living with uncertainty.

              Another element which impacts on uour mental health is the physical fatigue following an operation, so be prepared to take the time needed to properly recover.

              All the best to you.

              • @Lastchancetosee: Chronic fatigue is certainly something expected for 6-12 months. It's a good idea getting started with a professional, thank you.

      • It's due to the general anaesthetic. How were your bowels? Did you have a Ross procedure?

    • Not wanting to hijack OP's AMA: I felt a little of what you've described. It was more "wondering what life is going to be like" after full recovery. Or "what can I no longer do?". Those sorts of questions popped into my head every now and then. This is when I was still in lots of pain immediately after surgery and could barely move. But I got over it pretty quickly by thinking "F this - I'm going to try and enjoy my life even more now".

      No-one mentioned anything about depression, etc before the surgery, but they do have rehab classes post-surgery and you get to meet lots of people in the same boat. It was a bit funny though - everyone was in their 60s or more and I was the only one in my 30s so it was a bit harder to relate.

      • +1

        Yes I can relate to all of what you said. It certainly opened up my eyes to life and what I should be thankful for. Especially enjoying my life and making the most of it. I was surrounded the entire time by other patients who were well over 2-3 times my age, so that was interesting. The nurses kept commenting how they appreciated having a young person in the cardiac ward lol.

        • +2

          You would've definitely been the youngest! There were a lot of comments about my age - especially when combined with the words "heart attack". One of the first nights, I went for a walk with the monitor under my shirt (they were originally going to stent me) and when I walked back in, one of the nurses told me that the ward was closed to visitors. I had to explain to her that I was a patient and she laughed saying that they don't often get young patients.

          I shared a ward with three much other older guys. Hospitals are never fun, but when they moved me from ICU to the cardiac ward, I have to say that I had an absolute pisser of a few days with those guys and I actually felt a bit sad to leave!

  • Is your heart defect genetic. Passed on via family ?

    • Quite possibly/ we believe so. My immediate family do not have any heart defects however about 90 years ago my great-grand uncle passed away at 8 months old and all they knew was that he had something wrong with his heart.

  • Amazing they can stop the heart.

    After recovery, will you be restricted from say contact sports?

    • I've been told not to undertake heavy weight lifting at all by the doctors as it'll put way too much stress on my heart. I don't believe I have any restrictions on contact sports once the sternum is healed, however I don't participate in contact sports anymore.

  • Do you have any memories of the surgery at 5 days old. Maybe the recovery was painful

    • There is a well-accepted phenomenon called childhood amnesia. Anything that happened to you before about age 6 you may well remember that it happened, if only because it was talked about later that it did, but you don't remember it actually happening. If you think you do, you are almost certainly recalling a subsequently constructed false memory, what you think must have happened, not remembering the actual event itself. The problem is that to the person remembering it, a false memory feels exactly like a real one, so they can be absolutely convinced it is true. How can it not be true, I remember it.

      The existence of childhood amnesia is one of the clues that a claimed memory from decades earlier in childhood isn't actually real and should not be accepted as fact. Like "I remember the policeman calling us over to his car and taking us away to …".

      There is debate about exactly what age childhood amnesia applies prior to, and it would vary to some degree from person to person, but certainly no-one actually really remembers things that happened when they were only days old.

    • +1

      No memories from the surgery or around that time. I do have a big scar on the upper left side of my body to remind me though.

  • Hope recovery is going well.

    Sort of OT, i watched a video not long ago where they are still attempting to create the Bionic Heart but still trying to reduce chance of mechanical failure, at the moment they said it peaks to about 20 years i believe.

    Cool stuff

    • +1

      Thank you. Yes, I believe I watched a similar video as yourself. Amazing what some people set out to achieve and how passionate they are to advance medical science and technology

  • Glad to hear that you've made it through the first couple of months after surgery (and should no longer need a "teddy"!)

    What was worse: Removal of the drainage tubes or removal of the catheter? 🤣

    • +1

      hmm they were both very unpleasant. I would say the removal of the drainage tubes as it felt like a mini operation with 2 ICU nurses standing over me with tools. When they said to take a deep breath and hold it, then starting pulling one of the tubes out of my stomach, it felt like the tube went on forever. Very uncomfortable! Plus you have to experience it twice for the second tube haha. But the catheter was a very intense and very unpleasant feeling. I do not want another one of those things in me lol

      May I ask how you know about these things haha, I'm quite surprised. Has someone you know gone through this?

      • +1

        I actually went through this recovery process myself three years ago as a result of heart attack.

        Those tubes were the worst things ever! When they pulled the first drainage tube out, it made sound that "doonk" sound like you would hear when someone uses a toilet plunger! I already felt like toppling over to die and then I heard "one down, one more to go!" 😬. The catheter removal felt like a sharp blade slicing the inside! For days, I found myself reaching down every now and then to feel that everything was still there!

        I definitely don't want to experience either again! haha

    • +1

      Catheter was worse!! I still wince.

      • I still can't decide haha.

        But what I am sure of is I'm glad I wasn't awake when they inserted that thing! It'd be like shoving a pencil into the pee-hole! 😬

  • all you need now is a badass story to go with the scar…

    maybe start it something like.

    i was in the pub when i saw these 2 guys harassing this girl, that is when i …

  • What food- diet precaution did you take before and maybe now, after a few months.

    • +2

      Food related, I didn't really make any changes to my diet before or after. I eat pretty well and I'm in a normal weight range. Because my condition is congenital (born with it), food/ diet didn't play a part. Although a mediterranean diet is ideal and I try to stick to that as best as possible

      However as you can imagine, diet is very important for the majority of heart disease patients and this is why it was also heavily involved in my cardiac rehab program (although not really as relevant to someone with congenital heart disease).

  • +1

    Glade to here your all good mate. I had a triple bypass a couple of years ago so I can feel your pain, although it wasn't as painful as I thought it would be which was just as well as some of the pain killers made me chuck.

    Taking out the catheter was ok from memory the drain tubes I new something was happening, the worst was the jump start wires as they called them, apparently they are there just in case the heart stops or something, anyway a young nurse pulled out the first one with a bit of trouble, think she may not have done it before as the next one was really stuck so she got anther nurse who had more experience she had to really pull on it and I new it. It came out but the end but broke off in side which was interesting sorta! She left the room and a short time later a doctor came in and showed me a photo of the end of the wire and said that the wire has a small pig tail which is screwed into the heart somewhere, it had snapped off at the tail, which was not the first time he assured me and it would be fine. Have to say so far it has been. These people do an amazing job is all I can say

  • wow.. sounds like you’re doing great, considering..
    keep doing what you’re doing..

  • Well done to the doctors and yourself for this.
    Did you have any near death experiences? Or heard of some while in and out of the cardiac ward/hospital?

  • Also interested on your views on how you really deal with this internally on an ongoing basis? If you are religious, do you blame God? Was there a learning phase where you accepted these issues as just evolution(in a good way)/nature not doing its job properly?

    • Interested to hear about this too, do you take things more carefully and find yourself more risk averse?

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