33yo with BAV and severe stenosis

[Nesphito]

I’m not going to lie though. I’m freaking out that I have symptoms. I had a small panic attack last night. I just tell myself that if my doctor was worried about it he’d have me in surgery right now. All my preop appointments will be done on the 20th

 

[pellicle]

Hi

I’m not going to lie though. I’m freaking out that I have symptoms.

that's honest ... and the first steps to solving a problem is to look at it honestly. To be honest posts by some smug ******* here who recently goes on about stuff like "you should have a date now" does no good to the community here by simply agitating and injecting doubt and causing anxiety.

I had a small panic attack last night.

like that ...

I just tell myself that if my doctor was worried about it he’d have me in surgery right now. All my preop appointments will be done on the 20th

This is exactly the right view. The reality is that you are not going to die from your situation and if it was actually a critical level (and the word critical itself has different meanings in different contexts) where your life was actually in danger you'd be in surgery already. The use of critical is in the context of advanced planning not "ER room critical".

Indeed its possible that some of the "symptoms" may actually be related to (or exacerbated by anxiety).

So let me suggest some "meditations" by Marcus Aurelius (this is from the excellent Series called Black Sails).

rest and consider this, don't speed read it.

Next:

Don't mind too much the complaint bit, complaining is sort of needed at some times. But do recenter to mindfulness and thankfulness that you are not even remotely in the worst possible situation as far as illnesses go (cancer comes immediately to mind).

These mind sets are the basis of "resilience" ; which if you grew up with modern helicopter parents you may not have in your personal repertoire.
I'm Gen X and grew up in a small town and had a lot of experience on farms growing up too. So this includes getting out of the trouble I got myself into (which includes fixing machines I may have broken

I wrote this in the days before my surgery.
https://cjeastwd.blogspot.com/2011/11/heart-of-matter.html

HTH

 

[slipkid]

I’m not going to lie though. I’m freaking out that I have symptoms. I had a small panic attack last night. I just tell myself that if my doctor was worried about it he’d have me in surgery right now. All my preop appointments will be done on the 20th

Natural to freak out. Anyone would. I even freaked out when I learned 5 years after my OHS that I had another blockage and would have to undergo a cardiac cath procedure. I almost gave myself a heart attack worrying about having another heart attack!

Easier said than done but the key is to try to put your mind at rest. Do something you enjoy. Chill. Go to virtuall yoga/meditation with our guru Pellicle. This forum is proof that you'll get through this OK.

 

[pellicle]

This forum is proof that you'll get through this OK.

sometimes it is really good to remind people of the obvious ...
(*seriously)
its somewhat sad that so few today are interested in Merkintology

 

[tommyboy14]

The second time around (2nd OHS time) I was clearly symptomatic. I had difficulty breathing when power walking 500 meters. during the initial investigations, my LV expanded from moderate to severe dilatation. I thought that I had permanent heart damage. The surgeon wasnt sure if it would go back to normal. But my cardiologist said he knew my heart from eight years monitoring and that I would be ok. Guess what: My heart went back to normal in the first echo right after surgery. Incredible right?

Long story short: Let the doctors do their work. Let them worry about your health and listen to what they have to say. I have to say that my cardio is a really caring person who really knows the literature really well. He always gives very straight forward answers and explains how different studies correspond to clinical practice.

He told me that home INR management has improved the outcomes of warfarin therapy in his practice significantly and that he is trying to switch everyone of his patients to self monitoring or self management.

So I know that this is a very stressful part of (the ahead of surgery part). But please just focus on the period after the surgery. In my case, I got pretty depressed around 4-6 months out after surgery. Apparently some people get cardiac depression after surgery and I am one of them. That was the toughest part of the experience both times.

But again: Get a medical team that you believe you can trust your life with. Then let them do all the worrying and planning and OHS. I know it is much easier said than done, but as someone who has done this twice now, I think that this is the best approach for your own sanity.

 

[Nesphito]

Just got my CT results back. My surgeon is away this week so I can’t discuss the findings with him.

They found my mid ascending aorta has a diameter of 4.0x3.8 cm. I was hoping it would look normal since when they looked in 2020 everything was fine.

Also they found a mass in my spleen that’s 5.1x4.2cm. Hope it’s nothing serious, but they want to do an MRI to look at it.

 

[Nesphito]

I created another thread here, but I thought I’d also ask for advice in this one.

I talked with my surgeon and he doesn’t recommend replacing my aorta at 4cm. Would you guys agree? I did hear that insurance won’t cover the replacement before 5cm which sucks so bad. I don’t think I can afford it at that point.

Also what do you think of this study? https://www.sciencedirect.com/science/article/pii/S000291492030535X#sec0004

It says having a BAV isn’t a risk factor. This chart was interesting too. Looks like your dilation is more stable the lower the diameter is.

I’m still leaning towards having him replace it anyway, but I may not be able to afford it.

 

[Chuck C]

I talked with my surgeon and he doesn’t recommend replacing my aorta at 4cm. Would you guys agree?

Hi. You have not really provided much data here. You said that your aortic diameter went from "fine" in 2020 to 4cm now. If your aortic diameter had been stable at 4.0cm for 10 or 15 years, maybe best to leave it alone. But, this does not sound like the case. I have no idea exactly what "fine" means in this case, but you make it sound as if there has been significant enlargement in just about 3 years.

You're getting a mechanical valve, if I understood your previous post. I presume this is because you don't want another OHS down the road. If your aortic diameter is enlarging at a significant pace, and it sounds that way with what little info you have provided, there is a very good chance that you will need a future OHS to correct your aortic aneurysm.

My aortic diameter was only 3.6cm. I only had 20 months of tracking data, so not enough info to determine the rate of enlargement. There was no plan to replace my aorta. However, when my surgeon opened me up and got his eyes on my aorta, he could tell from the look of the tissue that I would likely need another OHS at somepoint down the road. This comes from decades of experience and operating on thousands of valve patients. The tissue just had that look.

He made a tough judegment call and decided to go ahead and replace my aorta. We had a lengthy discussion about this after my surgery as to why he made this decision. He was aware that I was choosing a mechanical valve because I wanted to be one and done. Had I gone tissue, he probably would not have replaced my aorta, because odds are that I would probably need another OHS down the road and my aorta could probably be taken care of at that time. But, since I was going mechanical, with the intention of not getting a future OHS, he made the call. In my view he made the correct decision.

Anyway, that might give you some idea to what I would do if I were in your shoes, but again, not really sure what "fine" means with respect to your aorta's diameter in 2020. The actual data would be helpful.

 

[Nesphito]

Hi. You have not really provided much data here. You said that your aortic diameter went from "fine" in 2020 to 4cm now. If your aortic diameter had been stable at 4.0cm for 10 or 15 years, maybe best to leave it alone. But, this does not sound like the case. I have no idea exactly what "fine" means in this case, but you make it sound as if there has been significant enlargement in just about 3 years.

You're getting a mechanical valve, if I understood your previous post. I presume this is because you don't want another OHS down the road. If your aortic diameter is enlarging at a significant pace, and it sounds that way with what little info you have provided, there is a very good chance that you will need a future OHS to correct your aortic aneurysm.

My aortic diameter was only 3.6cm. I only had 20 months of tracking data, so not enough info to determine the rate of enlargement. There was no plan to replace my aorta. However, when my surgeon opened me up and got his eyes on my aorta, he could tell from the look of the tissue that I would likely need another OHS at somepoint down the road. This comes from decades of experience and operating on thousands of valve patients. The tissue just had that look.

He made a tough judegment call and decided to go ahead and replace my aorta. We had a lengthy discussion about this after my surgery as to why he made this decision. He was aware that I was choosing a mechanical valve because I wanted to be one and done. Had I gone tissue, he probably would not have replaced my aorta, because odds are that I would probably need another OHS down the road and my aorta could probably be taken care of at that time. But, since I was going mechanical, with the intention of not getting a future OHS, he made the call. In my view he made the correct decision.

Anyway, that might give you some idea to what I would do if I were in your shoes, but again, not really sure what "fine" means with respect to your aorta's diameter in 2020. The actual data would be helpful.

Thanks for the feedback! Here’s my aorta history:

2020 MRA: Normal caliber aorta extending from the aortic root to the bifurcation

2020 echo: The aortic root is normal measuring at 2.7cm

2020 stress echo: no aorta data

2021: No data

2022 stress echo: The aortic root size is normal measuring at 3.10cm

2023 No history

2024 Echo: Ascending aorta 3.5cm, arch 3.1cm

2024 CT: Mid Ascending aorta: Limited by motion artifact, but approximately 4.0 x 3.8 cm.
Aortic Arch: Normal
Descending Aorta: Normal

Going through my data I’m upset they didn’t keep track of my aorta as well as I’d like. Half the time there’s nothing or says “normal”

 

[Chuck C]

they didn’t keep track of my aorta as well as I’d like. Half the time there’s nothing or says “normal”

I agree that it would be better for them to give exact measurements or at least have a reference range for how they are defining "normal".

The linked study below has some data on mean aortic diameter:

"The mean ascending aortic diameter of the reference population was 3.2 cm (±0.4 cm)."

"The proportion of subjects with an aorta <3.5 cm was 79.2%,"


https://karger.com/crd/article/131/4/265/97008/Aortic-Size-Distribution-in-the-General-Population