Hello all 👋🏻

[Spookygal]

Okay so, after a weekend of freaking out and calling everyone under the sun, I finally had my follow up with my cardiologist PA just now, who confirmed with my scans I have a leaky valve (my regurgitation went from mild to moderate) and my ascending aorta is a 4.1cm when it was 3.6cm in 2022. I thought initially there was some discrepancy on my new scans that were done just last week because I saw 3.7cm on my echo and my CT (without contrast) was was 4.1cm for ascending aorta but he said they were just different modalities. Then ended with “in my opinion you’ll definitely need surgery.” He kept saying the wrong values and forgetting what he was even talking about and had to keep referring to his notes. I’m over him. I have a new appointment with a MD in February with a new cardiologist.

I also have 2 appointments with 2 different cardiac surgeons in March. Both are very good. One is in NYC and one of the best in NJ. So that kind of makes me feel better. I’m interested to see what they say and how much time I have until I’ll need surgery. I know I come off complainy and whiny. I’m sorry about that I’m just out of my brain with worry.

Thinking of taking the Prozac that was prescribed to me years ago finally to help cope. Ha.

My aunt’s brother is a cardiovascular surgeon at Mayo Clinic in MN so I’ll send him my scans as well to see if he can weigh in.

Sigh. Everything seems like a lot right now. I can’t seem to wrap my head around needing heart surgery. It seems so big. So scary. So dangerous. I’m scared of it all. Scared of the complications that may follow. Scared of never feeling “normal” again. Can’t seem to shake this feeling and my day to day is HARD right now. I feel like a ticking time bomb that could go any minute.

I did make a therapy appointment before anyone suggests haha.

Anyway, thanks for reading. You all are so great and brave!

Natasha

 

[Survived03]

Spookygal, guess what? You are not alone in your thoughts and concerns. But you should take comfort that you are doing everything that IS IN YOUR CONTROL. Obtaining opinions, reading up on literature available, and participating on a forum full of people who have gone through something similar. Collectively this forum probably has hundreds if not thousands of feet of surgical scars as proof that we made it through successfully. You will too.

Something that helped me when I was in your same situation 20 years ago were the words of a friend who had just gone through two valve replacement surgeries in less than a month. She asked me if I was confident with my surgeon and their team. I was. "Ok, then it's now up to them, you have done your part". You just cant control everything. I promise you will get to a place of confidence. Then your focus should be on post surgery recovery.

Again, work on what you can control. I am here to help if needed.

Edit: I felt it was important to note that the reason for my friends two surgeries in one month was due to initial damage from endocarditis. The tissue would not hold the first valve. The second surgery was successful. A bioprosthetic valve in both cases.

 

[Deidra]

Thanks for keeping us updated. It's really normal to worry, and I don't think you are complain-y or whine-y at all. I'm glad there's a place on the internet where we can all talk to each other about this stuff.

It seems to me like you're doing everything you can to make sure you get the problem taken care of. That's really great to see, keep it up. You got this.

 

[Spookygal]

Thanks for keeping us updated. It's really normal to worry, and I don't think you are complain-y or whine-y at all. I'm glad there's a place on the internet where we can all talk to each other about this stuff.

It seems to me like you're doing everything you can to make sure you get the problem taken care of. That's really great to see, keep it up. You got this.

 

[Spookygal]

Okay so, after a weekend of freaking out and calling everyone under the sun, I finally had my follow up with my cardiologist PA just now, who confirmed with my scans I have a leaky valve (my regurgitation went from mild to moderate) and my ascending aorta is a 4.1cm when it was 3.6cm in 2022. I thought initially there was some discrepancy on my new scans that were done just last week because I saw 3.7cm on my echo and my CT (without contrast) was was 4.1cm for ascending aorta but he said they were just different modalities. Then ended with “in my opinion you’ll definitely need surgery.” He kept saying the wrong values and forgetting what he was even talking about and had to keep referring to his notes. I’m over him. I have a new appointment with a MD in February with a new cardiologist.

I also have 2 appointments with 2 different cardiac surgeons in March. Both are very good. One is in NYC and one of the best in NJ. So that kind of makes me feel better. I’m interested to see what they say and how much time I have until I’ll need surgery. I know I come off complainy and whiny. I’m sorry about that I’m just out of my brain with worry.

Thinking of taking the Prozac that was prescribed to me years ago finally to help cope. Ha.

My aunt’s brother is a cardiovascular surgeon at Mayo Clinic in MN so I’ll send him my scans as well to see if he can weigh in.

Sigh. Everything seems like a lot right now. I can’t seem to wrap my head around needing heart surgery. It seems so big. So scary. So dangerous. I’m scared of it all. Scared of the complications that may follow. Scared of never feeling “normal” again. Can’t seem to shake this feeling and my day to day is HARD right now. I feel like a ticking time bomb that could go any minute.

I did make a therapy appointment before anyone suggests haha.

Anyway, thanks for reading. You all are so great and brave!

Natasha

Also, I have BAV if anyone missed.

 

[pellicle]

Sigh. Everything seems like a lot right now. I can’t seem to wrap my head around needing heart surgery. It seems so big

Perhaps just don't think about it. Treat it as an abstract. It really wasn't that much different to my toe surgery. I was asleep for both.

The other valve side of the equation can be treated like an abstract concept / problem.


Dunno if that helps.

 

[Spookygal]

Spookygal, guess what? You are not alone in your thoughts and concerns. But you should take comfort that you are doing everything that IS IN YOUR CONTROL. Obtaining opinions, reading up on literature available, and participating on a forum full of people who have gone through something similar. Collectively this forum probably has hundreds if not thousands of feet of surgical scars as proof that we made it through successfully. You will too.

Something that helped me when I was in your same situation 20 years ago were the words of a friend who had just gone through two valve replacement surgeries in less than a month. She asked me if I was confident with my surgeon and their team. I was. "Ok, then it's now up to them, you have done your part". You just cant control everything. I promise you will get to a place of confidence. Then your focus should be on post surgery recovery.

Again, work on what you can control. I am here to help if needed.

Edit: I felt it was important to note that the reason for my friends two surgeries in one month was due to initial damage from endocarditis. The tissue would not hold the first valve. The second surgery was successful. A bioprosthetic valve in both cases.

Thank you so because much

Perhaps just don't think about it. Treat it as an abstract. It really wasn't that much different to my toe surgery. I was asleep for both.

The other valve side of the equation can be treated like an abstract concept / problem.


Dunno if that helps.

thats what I’m gonna try to do. Oddly enough when people are scared to “die in surgery” I always think “well you’d never know” lol.

 

[V__]

I thought initially there was some discrepancy on my new scans that were done just last week because I saw 3.7cm on my echo and my CT (without contrast) was was 4.1cm for ascending aorta but he said they were just different modalities.

I had seen similar differences between the echo and CT. My cardiologist explained that the CT scan is much more accurate in this regard. (It's a full 3-dimensional information, unlike echo, where the measurements will depend on alignment of the tool.)

I also have 2 appointments with 2 different cardiac surgeons in March. Both are very good. One is in NYC and one of the best in NJ.

Excellent!

My aunt’s brother is a cardiovascular surgeon at Mayo Clinic in MN so I’ll send him my scans as well to see if he can weigh in.

It's almost an "unfair advantage" You should definitely use it. Sounds like a "3rd opinion" option, which is truly great to have!

needing heart surgery. It seems so big.

Yes, it's big. But it's also rather common. There are half a million of them done in the US every year. So, even though it's complex (*), it's well understood and practiced. In a way, it's very good to have a known problem with known solution that works very well.

A friend of mine is battling cancer now. That stuff is much harder by comparison. Some of the cancers are found late (asymptomatic stuff is hard to diagnose), curing them is difficult, and the prognosis is not great. Truly, the non-emergency heart surgery looks really benign by comparison.

(*) Some things in life are complex if you look into details. Cars, for example: many parts, a long procurement/assembly process, etc. But as a driver you "just use it". Similarly, as a heart patient in a hospital, you just have to be there and follow the nurses and doctors. They really know their stuff.

 

[3mm]

My aunt’s brother is a cardiovascular surgeon at Mayo Clinic in MN

I had my open heart surgery at Mayo in MN in Sep. My mitral valve was repaired, and my aortic valve was replaced with an On-x mechanical. Dr Richard Daly was my surgeon, and Dr Kim was his assistant. Perchance are one of them your aunt's brother? In any case, Mayo does great work, and I highly recommend Mayo for anyone needing heart surgery.

 

[Spookygal]

I had my open heart surgery at Mayo in MN in Sep. My mitral valve was repaired, and my aortic valve was replaced with an On-x mechanical. Dr Richard Daly was my surgeon, and Dr Kim was his assistant. Perchance are one of them your aunt's brother? In any case, Mayo does great work, and I highly recommend Mayo for anyone needing heart surgery.

Dr Richard Daly!!!! That is him wow!!!!!!!!

 

[bicuspidrek]

Natasha, it's coming to a year of my heart valve replacement surgery. My post is somewhere out here. Your post about your BAV DX made me come out of hibernation.

It's natural to be freaked out. I know I was. In 2022, I was 35 when I was DX, newly married. I recall thinking that the "in sickness, and in health" part of the marriage vows came a little too soon for my SO.

My cardiologist had a mild manner in approaching the DX. He was calm and gave me space. At times, too much. He mentioned "will require surgery sooner rather than later" many times. We had appointments quarterly.

Space was important, and time, if available, was too. It gave me time to process and the brain (or mine, at least) did a good deal of that subconsciously.

I had the idea that surgery would take place mid-2023, after SO and I had taken a trip together. Jan 2023 my cardiologist mentioned that a great surgeon was in town and pushed me to attend a consult. Couple of days later, my surgery was scheduled Feb 2023. I was fearful, but I was ready.

Recovery wasn't the easiest, but seeing marked weekly improvements kept me going.
Now one year on, I am pretty much back to how I was pre-surgery. I take care of my health a lot more. Quit smoking, started a plant-based diet and generally am in decent condition.

It's scary, it really is. And it feels large, very much so. Take however much time (as available) and in whatever way to process it. My thoughts are with you!

 

[3mm]

Dr Richard Daly!!!! That is him wow!!!!!!!!

Spookygal - Wonderful!

- Mayo does a great job providing a 2nd opinion on surgery options. I urge you to talk with them. I initially called Mayo for a 2nd opinion in mid August, 2023. A nurse who has worked with Dr Daly for 10 years talked with me for over an hour to document my case. She also got copies of all my relevant test results from other hospitals and Drs. She helped me consider my options and think about my plans. Even if I had not gone to Mayo for surgery, my conversation with her would have been priceless. I was fortunate; Dr Daly had an opening on Sep 14th, 2023. I locked that date in and planned accordingly.

- Mayo handles patients from out of town very, very well. If your insurance will cover it, you may want to consider going there for surgery.

 

[Chuck C]

Oddly enough when people are scared to “die in surgery” I always think “well you’d never know” lol.

This was almost exactly what I told myself.

I was 100% confident that I would survive my OHS surgery. I figured that if I was wrong, I'd never know it. lol

 

[Spookygal]

Spookygal - Wonderful!

- Mayo does a great job providing a 2nd opinion on surgery options. I urge you to talk with them. I initially called Mayo for a 2nd opinion in mid August, 2023. A nurse who has worked with Dr Daly for 10 years talked with me for over an hour to document my case. She also got copies of all my relevant test results from other hospitals and Drs. She helped me consider my options and think about my plans. Even if I had not gone to Mayo for surgery, my conversation with her would have been priceless. I was fortunate; Dr Daly had an opening on Sep 14th, 2023. I locked that date in and planned accordingly.

- Mayo handles patients from out of town very, very well. If your insurance will cover it, you may want to consider going there for surgery.

Thanks for the advice! Will look into it! I of course have a ton of family in MN so would be easy to figure out so glad Dick did a great job on you!!!

 

[Spookygal]

Spookygal, guess what? You are not alone in your thoughts and concerns. But you should take comfort that you are doing everything that IS IN YOUR CONTROL. Obtaining opinions, reading up on literature available, and participating on a forum full of people who have gone through something similar. Collectively this forum probably has hundreds if not thousands of feet of surgical scars as proof that we made it through successfully. You will too.

Something that helped me when I was in your same situation 20 years ago were the words of a friend who had just gone through two valve replacement surgeries in less than a month. She asked me if I was confident with my surgeon and their team. I was. "Ok, then it's now up to them, you have done your part". You just cant control everything. I promise you will get to a place of confidence. Then your focus should be on post surgery recovery.

Again, work on what you can control. I am here to help if needed.

Edit: I felt it was important to note that the reason for my friends two surgeries in one month was due to initial damage from endocarditis. The tissue would not hold the first valve. The second surgery was successful. A bioprosthetic valve in both cases.

Thank you so much for the kind reply! I’ve always had issues with control. Probably why I hate flying. lol

 

[Spookygal]

Spookygal, guess what? You are not alone in your thoughts and concerns. But you should take comfort that you are doing everything that IS IN YOUR CONTROL. Obtaining opinions, reading up on literature available, and participating on a forum full of people who have gone through something similar. Collectively this forum probably has hundreds if not thousands of feet of surgical scars as proof that we made it through successfully. You will too.

Something that helped me when I was in your same situation 20 years ago were the words of a friend who had just gone through two valve replacement surgeries in less than a month. She asked me if I was confident with my surgeon and their team. I was. "Ok, then it's now up to them, you have done your part". You just cant control everything. I promise you will get to a place of confidence. Then your focus should be on post surgery recovery.

Again, work on what you can control. I am here to help if needed.

Edit: I felt it was important to note that the reason for my friends two surgeries in one month was due to initial damage from endocarditis. The tissue would not hold the first valve. The second surgery was successful. A bioprosthetic valve in both cases.

Thanks so much for this reply. I needed this!