u/Individual_Article21

BAV with aneurysm and severe aortic regurgitation

I am officially less than twelve hours away from my procedure! The surreality of it all is kicking in and it still does not feel like this is happening to me. It's a little weird knowing that, this time last year, I was the happiest I have been, and now my life is about to get turned upside down for a bit.

I feel pretty okay all things considered (BIG step-up from me having panic attacks every night for the first three months of the year over all of this) but am still having moments of "everything that could possibly go wrong is going to go wrong and I am not going to make it out of it." I keep having to tell myself that there is a less than one percent chance something will happen and, even if something does, I am in the best possible place (and also won't know if something actually happens, although I do not know if this is a comfort or not).

I really just hope that everything goes okay, and I won't need another surgery for at least twenty years. Also hoping that this fixes my heart palpitations because dear LORD has that been the worst part about all of this.

Given everything goes okay, I should only be in the hospital for five days so I hope I will be home by the end of the week. Anyway, I will hopefully give an update sometime later this week.

hello!

i have posted on here before quite a bit, but wanted to give an update that i am officially one week out from my Ross procedure, and my pre-op appointment on Tuesday.

to say that i am nervous or scared is an understatement. ever since my symptoms started, i’ve been having heart palpitations but they’ve been a lot worse this past week along with some chest pain, that i think is all just due to anxiety + how active i have been lately due to moving/work. it is definitely not helping my nerves about any of this.

i know the buildup is usually the worst of it, so i am definitely feeling that. i know that everything will be fine during surgery and if anything does happen then i am in good hands, but i’m still so worried something will happen. i’m trying to not speak it into existence and just stay positive, but i am currently in the “this is unfair” stage of grief and am not yet sure when i will hit acceptance lol.

i’ve got pretty much everything figured out for post surgery but i would love any more tips anyone would be willing to give on what is best while in the hospital, what your setup was post discharge, along with what worked best for everyone, what was the hardest part of healing, and really just some words of wisdom as i think that will help most in making me feel better a bit.

i will update everyone sometime in the next two weeks with everything!

Hello!

22F, I have posted on here a few times before about what has been going on, and I have some questions about symptoms. So for the past 7 months, I have experienced occasional rapid heartrate, near constant heart palpitations (I have a 5% burden), and a new symptom of increasingly common chest pain. I went to the ER for the chest pain earlier this month on June 7th, and they cleared me, said I was fine, and basically to deal with it until my surgery in August. Followed up with my cardiologist last Monday about this and they said it was just a symptom of my severe regurgitation and to deal with it (I was actually having quite bad chest pain when I was at their office last week, and they just looked at me and said I was fine). I just spoke with my surgeon and they believe that I should not be having it as often as I am, and that it is cause for concern.

Whenever I experience the chest pain, it is more of stabbing sharp pains around my left nipple area, a little off to the side of my breast, or below where my ribs are. Sometimes I get them accompanied with palpitations or when I take a deep breath and will occasionally feel a squeezing sensation, or a tingling/cold sensation on the left side of my breast. They do not make me breathless or lightheaded or anything (so far). I am unsure if it is actually something with my heart or just surrounding tissue. I do have a bit of a tooth thing going on (which I will be seeing the dentist for tomorrow) but they do not think it is related and I am currently on antibiotics for it.

I called my cardiologist about scheduling further testing to see if anything is going on, but they probably won't get back to me until Monday because of the holiday weekend. My surgeon is suggesting that I move up my surgery but I am in the middle of getting ready to move, which isn't even happening until the 19th. I am essentially stuck between a rock and a hard place and I really do not know what to do. I'm just so scared of something happening but everyone keeps telling me I am fine and to deal with it, but I do not feel like this should be happening. I am kinda just at a loss for what to do and would just like to know if anyone else experienced any of these symptoms and what they were able to do about it.

Hi everyone!

22F who has posted on here before about my journey of figuring out I would need open heart surgery over the past few months. It is officially two months until my surgery and I am not really sure how to feel about it all.

I am getting the Ross procedure done in hopes that it will last long enough for me to have a semi-normal life until I decide if I want to have children. The closer I get to the surgery the more I wonder if I am making the correct decision on this as I really don't want to have another surgery, but really want to live normally like I used to (even if it was unknowing that something was seriously wrong). I just hope everything with the surgery goes well and I don't need another one anytime soon.

I've definitely been pretty anxious about this as it gets closer. I'm usually fine throughout the day when I'm at work and around people but once I'm alone at night it all kind of catches up to me and I can't think about anything else. It doesn't help that I've been having some intermittent chest pain on the left side of my heart/breast and some tightness in that same spot for the past few weeks. I ended up going to the ER for it once (which they said I was fine) and have an appointment with a nurse at my cardiologist office set for Monday to talk with them about it. I don't know if it is just anxiety, my severe regurgitation, my aortic aneurysm, or a secret fourth option, but it's definitely not helping me feel better. It's been a constant worry over the past six months of worrying if something is going to happen, especially once I fall asleep, and its a struggle.

Additionally, I am starting to get everything prepared for when I'll need my surgery. I'm moving in a month and will start the busy period of my job directly after, so I am trying to get everything situated before then. I saw a pretty lengthy thread on here the other week of things someone could need so I am getting the sensible stuff of what could help make me more comfortable while I'm in the hospital and things I'll need directly after. I'd love any tips anyone could give me about what your own experience was and what recovery looks like when it comes to mobility, nutrition after surgery, and what the first four weeks look like as I am concerned about the week in the hospital and those first few weeks the most. I greatly appreciate anyone who takes the time to read this and leaves a comment!

Hello everyone!

I have posted on here several times about my journey over the past few months of finding out I would need open heart surgery. I have officially decided on the Ross procedure where I will get my biscupid valve and aortic aneurysm fixed, and will be having it done on August 17th by Dr. Craig Elkins in the OKC area (if anyone just so happens to have had their, or any, procedure done by him, I would love any and all info. I have heard good things so far, but am still worried).

I decided on the Ross procedure due to the fact that I am so young and would at least like the option of having kids. The Ross seemed like the better option for that compared to a tissue valve, as I am hoping the results will last longer. If I for some reason cannot do the Ross once he's in there looking at everything, I think I will just go ahead and do the mechanical regardless (which I realize contradicts my prior statement, but still). It just does not seem worth it to be to do a tissue valve if he cannot do the Ross.

I just finally scheduled the surgery yesterday and am feeling incredibly anxious about it. I honestly don't even know what to feel, overall. I keep trying to console myself with the fact that there's a 1% mortality rate while in surgery, and that the odds are obviously incredibly thin, but can't help hoping the universe doesn't play some sick trick on me (will be talking about all of this in therapy, so do not worry about that lol). I am also trying to not put that out into the universe, but it is hard. I just really want the surgery to go well. It is going to be a rough few months of trying to be positive about it. I honestly just cannot wait for the day I feel like what I imagine a normal person feels like, and to not constantly have heart palpitations or feel fatigued constantly.

With all of that being said, does anyone have any tips for pre/post op stuff? Along with what your recovery from the Ross looked like, for those that have had one? I have a pretty good idea of everything I'll need or what that first week/few weeks after will look like, but would absolutely love whatever information possible.