Simon's Posts

Hi Simon and welcome! I had this surgery 1 1/2 years ago. My two pieces of advice are do research and choose the best surgeon (who has done this surgery) that you are able to get to. Don’t just choose on convenience if possible but look up number of surgeries, success rate, etc. Second is become an active member of this group. It saved me, it really did. No one else knew what I was going through. The lead up period to surgery - in my case a year - was the most stressful.

I totally agree with Valerie. Find the most experienced doctor at a hospital with an excellent record. And use this site! Adam has built a wonderful resource with tons of info, read and listen to as much as you can, and ask all the questions you might have. I had my SAVR done 5 weeks ago, 10/27/25. These procedures have become routine; with the right surgeon all will work out fine.

Similar to what Valerie said, the months/weeks before my OHS were a time of extreme worry for me. I was a teen, and I was just afraid I wouldn’t wake up from the procedure. After the surgery went well, I expected to feel relief but instead I felt sadness I could not explain (perhaps it was chemical), and I felt like an alien in my community for being temporarily invisibly disabled by a recovering heart. You may or may not experience similar emotions before and after your OHS, but nonetheless I recommend talking to trusted friends and family about any emotional hangups you have before and after the procedure! I didn't, because I was certain they would not understand, and I regret that decision. If I could do it all over again, I would absolutely talk to my loved ones because it would have alleviated a lot of the negative emotions swimming around in my head during that time.

Hello Simon, as we spoke earlier, my ascending aorta is currently 4.6-4.7 cm. I will most likely undergo Bentall surgery in 2026. A mechanical valve will be used. I'd like to hear your experiences, especially regarding whether the surgery is a full sternotomy or a mini sternotomy, and whether INR monitoring is easy.

The anticipation of the surgery is definitely way more difficult than the surgery. I found the recovery kind of energizing, being amazed at how my body was recovering. They will let you lose plenty of blood, which is better than random transfusions -- with the result that you will be weak at first, and then feel better every day as your red blood counts recover in parallel with your healing. Take heart in the milestones as you recover. It's kind of an amazing surgery. It's just plumbing, so very predictable; but it's definitely a jarring experience those first 36 hours. I went in on a Tuesday morning and was home for dinner Friday, so it's manageable. I agree with other posts about finding somebody who does it all the time. It's worth knowing that not just the surgeon herself, but all the nurses, have seen every possible permutation/ complication, and probably within the last month.

There is a doctor on this site, Dr Gerdisch, who has his patients do "Pre-hab" and has them drink certain protein drinks to build themselves up prior to surgery. He was not my doctor but I do think my recovery would have been less eventful had I known about that. Waiting is difficult as everyone says and I am known by some as second opinion Rose because I'm always telling people to get a second opinion. God bless you on this journey.

Hi everyone, thanks for the responses so far. I’ve known about my condition for 18 years, with so much time to think about it, I’m not sure if it’s a good or bad thing. So far, I have found a great surgeon, cardiologist and I’m being supported by a Nurse practitioner that works with the surgeon . This site has also been great, as you have mentioned it’s powerful when you can connect with others who have actually been down this road already. What I’ve been doing, is taking time to meet key people as it helps me build trust in those that will be caring for me. Eg I’ve now seen 3 surgeons and have found one I’m comfortable with. I plan to meet an anaesthetist next year as I want to understand my options around sedation in ICU, I struggle when I don’t feel I have control of my memory so I’m interested in lighter sedation. I’m also looking into prehab, where apparently I might be able to see the ICU, meet the ICU manager as well as the physio before surgery. The idea of meeting staff before surgery just makes me feel more comfortable as without this I’d literally be handing over my body and life to people I don’t know, im trying to keep fit as I want to go into it as healthy as possible. I’m not sure about anything I should change at home to make recovery easier, any ideas would be great.

Hi Diren, my surgery will be full sternotomy, fairly sure all Bentall procedures are to allow access, best ask your surgeon to confirm. I’m not sure about INR, some people seem to find it ok and others struggle. I’m now aiming for a tissue valve to avoid thinners and ongoing testing. From what I understand it seems that for many people it’s not really an issue once things settle down.

Hi Jessica, thanks for sharing your story. When I was younger I experienced medical trauma, I was sedated and forced to do something I wasn’t prepared for. It’s stayed with me and it’s why I’m doing everything I can to get some help now as well as meeting staff early to start rebuilding my trust. I stayed silent for many many years, one thing I’ve learnt is trauma never goes away until you face it head on. So far it’s been empowering and I’m hoping that with careful planning I get through it without being retraumatised.

You sound like you have this in hand, Simon. Once I woke up in the ICU, I was never sedated. They just confirmed I was situationally aware before they released my arms from restraints. I was still intubated, but after a few hours they could see I was alert and didn't need it, so they removed it (1-2-3 cough...). They were very stingy with pain relief and wouldn't give me opioids (2018 was the beginning of the opioid crisis and they were tough!), and I had some real pain that first evening, where one of the drainage tubes went under my rib cage. I think it was Torodol that helped the most -- it's not an opioid. That let me sleep. By 48 hours after surgery I was on plain tylenol/ acetominophen.

Hi Thomas, so did you specify anything around sedation before your surgery? I’ve assume that standard practice is to be sedated and memory erased for most of icu. I really don’t want that and prefer light sedation or none with appropriate pain relief as I want to have a clear memory once I’m awake.

Yes, I do. When I finally woke up (14 hours after the surgery was completed), I realized that the breathing tube was still in. It kind of freaked me out but the nurse was right there and explained that they left it in because I set off the alarms whenever they turned it off because I wasn't breathing on my own. Within a few minutes, the pulmonary guy came shortly afterwards and took it out. I don't remember how long I was awake before it came out and was a little foggy but I do remember quite a bit. I felt very safe in ICU because the nurse to patient ratio is excellent. The whole experience was not as bad as I had imagined it would be.

Simon, I did not specify treatment in the ICU, but I totally remember everything from the moment I woke up shortly after arriving in the ICU. As I said, my arms were strapped down with Velcro restraints, because when some people wake up they grab at things and thrash around, and that can disrupt wires and tubes. I didn’t like the pain, but I was able to communicate with them, even before my tube was taken out of my throat. I could spell letters in the air. It was not particularly traumatic, I just needed to communicate to them when the pain was bad from the abdominal drainage tube. The only annoying part was really all the noise. An ICU is just loud, there’s always something going on.

Hi Thomas, thanks for sharing. I’m hoping to avoid restraints as it’s a major trigger for me, my approach has so far been to speak up, be honest and so far I feel staff have been supportive. Still a lot more planning needed from me but hopefully staff actually do what they talk about and it shouldn’t be too bad. I really don’t understand why ICU alarms needs to be so load and why they can’t just be turned down to improve patient comfort

Hi Simon. My opinion is that you would want to have the surgery before it gets really bad. I didn't think I had symptoms but realized after surgery and recovery that I really did have them and just thought I was getting older. The fact that you are in good shape for your age will help you in your recovery. I would also get more than one opinion.

I believe “severe” with no symptoms is their preferred status for recommending surgical intervention. So, it sounds like you are probably on the cusp for them recommending surgery. The reason is, studies have shown people with few or no symptoms pre-surgery are more likely to have better post-surgical recovery, longevity, and lower risk of complications. They balance that with the severe diagnosis to make sure you are “sick enough” to warrant the risks associated with major surgery. I had the opposite problem from you, regurgitation. In a year I went from discovering I had a moderate problem to it becoming severe. I had no symptoms and was doing +3 mile runs in the weeks before my surgery 22 days ago. The first 17 days of recovery were tough with 11 in the hospital. But I’m already back to doing 60 - 90 minutes of walking a day broken into 2 or 3 sessions. I’m returning to desk duties & working from home next week.

Simon, I did not have symptoms at all and then one day - boom- I couldn't walk on level ground without being very short of breath. Left the Cardiologists office for immediate testing and surgery within 3 weeks. I was 71 at the time and in relatively good shape- except for the breathing. Some hospitals have certain criteria that has to be met before they will operate. You should probably check with your Cardiologist. The narrowing/hardening of my valve had to be a certain # - and by the time I couldn't breath right, I had hit that #.

Hi Rose, so far my cardiologist recommends waiting, whilst I did see a surgeon to discuss if the Ross procedure is an option for me (which it isn’t) and he recommends surgery in the next 6 to 12 months. So it’s a little confusing for me now, thinking of getting a second opinion from another cardiologist.

The trigger for me was going from moderate to severe regurgitation in a year and my aortic chamber and root, which had both already enlarged, also measured as having gotten bigger. This translated to me being at risk of my heart getting progressively weaker. My cardiologist told me he was recommending surgery and made a referral. The surgeon agreed that this was the right time for surgery and said I’d probably regain some heart function post-surgery.

It’s generally going well, thanks. I only have two minor problems: 1) occasionally my stomach hurts for hours after eating. It makes it difficult to get the next meal down. I usually resort to a fruit-protein smoothie. 2) When I go off diuretics, I put about 7lbs of water back on over the next 4 days. I’m waiting to see if they want to put me back on diuretics again.

I believe you would only be sedated if you were still intubated , ventilated, and not ready for extubation yet, or if you were unusually disoriented and in fighting mode. Otherwise, as you will be slowly waking up from the anesthesia, and when ready for extubation, the sedation is stopped. General ongoing sedation during the ICU stay is not the norm.

Thanks Marie, what’s the purpose of sedating a patient while intubated? It seems this is standard practice rather than allowing someone to wake up and then be managed for pain while intubated. I just have fear of becoming confused if Im sedated and having to deal with a tube down my throat, as well as the many other tubes etc. I think I’d cope better if I was allowed to orientate myself without being sedated while intubated. Seems there were lots of intubated people during Covid that we alert and not sedated so just wondering if it’s ever like that in icu after surgery..

I think you are worrying too much about it. I would discuss it with the anesthesiologist when the time comes. That being said, I had the breathing tube in when I woke up but don't remember if I was sedated or not. I was aware of everything going on from the moment I awoke.

It Isn’t always easy to be awake and intubated. It will bother some people more than others. If you are tolerating it well, they will not probably give you ongoing sedation. And yes, there are plenty of people who are intubated and can manage it with nothing, or only with the as-needed pain medications. Every case is different , and depending how your case goes, how you react, and your vital signs, you may not get sedation in ICU. The goal is letting you wake up from the anesthetic, not to keep you sedated. Some people get extubated in the OR, and some people go to ICU intubated. Once again, it all depends on how your surgery goes, your condition and vital signs, and the preference of the surgical team. Hope that answers some of your questions.

I am not sure I understand the question. If you go through heart surgery, you will get full sedation. There is no other way around it. I am not sure about minimal invasive surgery but I suspect you will also get full sedation. You will be in an ICU room for probably 2-3 days. They don't keep you sedated there. Check out the learning center. https://www.heart-valve-surgery.com/learning-center.php

I would talk to the anesthesiologist as Rose suggests. Sedation always knocks me out, so I make sure I communicate my concerns before any kind of procedure. As Robert says, there is no way around general anesthesia with heart surgery. Pains meds affect your brain, too, so it really comes down to having to weigh risk vs benefit. Compared to anesthesia, sedation’s effect on your brain is minimal in the long run. Being in pain or frightened or having elevated anxiety is not good, either. The good news is you will recover eventually. I knew I would need help after my surgery, so requested neuro therapy ahead of time.

I believe you're speaking of the grey zone between surgery completion and extubation... many patient, myself included, do have to be sedated further to keep calm while waiting for key breathing parameters to normalize... Each patient is different - many, myself included, could not follow commands for a period of time. Extra drugs keep things safe. I would not behave for a period of time and needed these drugs. This was in my best interest, and I am grateful for the drugs... You can talk about it - but honestly, amnesia will be the least of your problems in the 24 hours post surgery!!!!

Thanks for the feedback everyone. This might not be an issue and is something I’m trying to understand. Yumiko, what is neuro therapy and did it help you? Robert, I am referring to the time in ICU between coming out of the general and being extubated. I don’t have concerns about the general but after some research Dr Google has provided differing views about what happens in ICU and some problems people can have during this time. I’ll check out the learning centre too, thanks for the link. So far, this forum has been awesome as there is nothing better than sharing real experiences.

I just read the “emotional changes” after surgery in the learning centre. This is what I’m trying to learn about and to see if there’s anything during recovery that could mitigate this. I might be wrong, but do feel the stage between waking from general and being extubated is important and could create longer term issues depending on drugs used, patient reactions etc…

Seek out a surgeon and anesthesiologist who believe in early extubation. There are some who remove the tube in the ER. I'm not sure if you're referring to cardiac depression when you say emotional changes. It does happen to some people, but I'm not aware that it's been scientifically tied to post-op sedation. Good question.

Early extubation probably is key, as long as it is safe to do so. I was already breathing on my own when I woke up, or if I was awake during extubation I don’t remember. There are usually three kinds of neuro therapy - physical, occupational, and speech. Physical and occupational therapies help for balance issues a lot of people have post surgery. “Speech” is not a very descriptive term but it focuses more on cognitive issues, including but not limited to speech. I got all three kinds after a stroke and more or less recovered from the condition but still have aphasia that is worse when I’m tired, so I received a second round of speech therapy after my valve surgery and it helped a lot. It might be hard to get a prescription for one if you are not already seeing a neurologist, but any kind of activity that is supposed to support your brain should help - physical exercise, nutrition, hydration, mindfulness training, playing games, etc.

Yes it is generally anesthesia who makes that call, with some decisions coming from the ICU nurses and possibly respiratory therapy. Pain meds are ordered by surgery and possibly anesthesia, and given by the ICU nurses on their judgement and experience. Every place may do things a bit differently, though. I myself was worried about the post-op intubation, having been a nurse anesthetist for decades. However, the experience did not live up to my worrying. I remember waking up intubated, chewing on the tube. I then fell back asleep, and the next thing I knew, I woke up and the tube was gone. Many people don’t remember the tube at all.

I am not sure about the extubation part. All I remember is that I don't remember much 😊 But if you are concerned about it, I can ask my BIL. He did thousand of surgeries. Not heart but invasive. But from my experience, the intubation is the least of your concerns. It's how are you sleeping? How are you getting a pan of water filling your bottle, etc.