Just plain scared

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JennMoore

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Joined
Nov 14, 2019
Messages
1
Hi, I'm Jenn. Im 50 years old with a BAV. I was diagnosed 3 years ago with Moderate/Severe. It has now progressed to severe. I am having symptoms such as chest pain and dizziness. My feet and hands go numb sometimes too, I don't know if that's related. My cardiologist is thinking it's time to get this thing fixed. I had a TEE yesterday but it was unsuccessful because my oxygen level keep dropping during the procedure and they kept having to "bag me" to get it back up. Dr took a couple of pics but doesn't think they will be good enough to give him additional information. He is supposed to contact me today to set up the heart cath procedure and to refer a surgeon for me. It is suggesting we do it sooner rather than later. This is going way to fast and I'm terrified.
 

Superbob

Steely Resolve!
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Hi Jenn. It is okay to be scared. We all were anxious to one degree or another. I am BAV too. Had aortic root and valve replacement in 2005 (at age 63), and then a repeat two months ago because of enlarging aneurysm in ascending aortic arch. I am now in cardiac rehab and doing well. Your cardologist sounds like he is zeroed in on the issue. One thought: I would welcome his recommendation of a surgeon, but wouldn't hesitate to check on other surgeons who might be excellent options. The surgeon should have done many of these types of surgeries with success. The success rate is very high, BTW. So try to calm your nerves, check for your best options, and you will be posting us with good news of your procedure before long. All best to you!
 

Protimenow

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Joined
Aug 10, 2010
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3,587
Location
California
Unless you're terrified about the bill for the surgery, and how it will be paid, terror about getting the surgery is probably very misplaced.

Over the years, valve replacement has become an almost common procedure - with many thousands (probably hundreds of thousands by now) of these procedures having been done.

Get a good surgeon, with an excellent surgical team. If possible (though it isn't essential) select a hospital that specializes in this type of surgery.

Sure, it's not like going in to have a cavity filled - or even a root canal - but from the patient's point of view, the team does all the work, and you'll have to just be there, to let them do what they're well trained and extremely experienced it.

Relax. If/when you need the surgery, things should go just fine --- and, as with nearly all of us - you'll emerge stronger, healthier, feeling a hell of a lot better, and wondering why the hell you waited so damned long to get it done.
 

dick0236

Eat the elephant one bite at a time
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Hi Jenn, I just noted from your profile that you and I share the same birthday....Feb. 21, altho the year is different. In fact, my artificial valve is older than you....52;). You have found a very, very good forum to help take the fear and mystery out of what has to be very scary. The folks here have been thru this and will be very willing to help you make sense of OHS(open heart surgery). The one thing I can share is your issue is "fixable" and you will go on about your life, normally, afterwords.
 

rich01

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Joined
Aug 23, 2018
Messages
270
Location
Virginia US
Don't stress about the heart cath. I had mine with no anesthesia. They will numb the area where they insert the catheter. Tell the anesthetist how much anesthesia you want/need. I think they want you conscious enough to be able to respond to them, but you shouldn't feel a thing.

They can do the cath either through the wrist or the groin. Each has advantages and disadvantages. Through the wrist is a quicker recovery. I had my heart cath through the groin and 2 stents through the wrist. Neither was stressful, but I prefer the wrist if possible. Your doctor will pick based on your case, but it wouldn't hurt to ask for wrist if possible.

One thing to be aware of. If you have any urinary problems, the anesthesia "may" aggravate them. Even without anesthesia, going through the groin can put stress on the bladder. If this is the case, make sure you mention it to your doctor.
 

Superman

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Joined
Oct 3, 2009
Messages
898
Location
Grand Rapids, MI, USA
Welcome to the forum. You’ll get lots of great advice here. It’s a very diverse group with lots of experience to share. I was BAV also. Went severe fairly early and had my valve replaced 29 years ago today. I’m turning 47 Saturday.

No one can tell you how to feel. I’ll just say that when it’s time to be replaced, you have more to fear from your native valve than from the surgery. That’s why they’re doing it. It’s not routine for any one individual as we hope for only one or two surgeries in our lifetime. However, it is routine for the surgical teams. You’ll be in good hands when it’s time. I hear they don’t let just anyone do this type of procedure.
 

pellicle

Professional Dingbat
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Nov 4, 2012
Messages
7,170
Location
Queensland, OzTrayLeeYa
Hi Jenn

Hi, I'm Jenn. Im 50 years old with a BAV. I was diagnosed 3 years ago with Moderate/Severe. It has now progressed to severe. I am having symptoms such as chest pain and dizziness.
I guess that the best way to look at it is to not look at it. Its like the glass of windows, you look through windows (even though they are there as many birds will attest to) to the further away places as if they are not there.

OHS is among the most (if not the most) successful surgery in the medical repertoire. Sure the surgery may feel like a difficult time (what, with organising so many things) but in a few years you'll be almost unaware it happened.

No matter what valve you pick you'll be doing well soon enough.

Take care and keep in mind the views of the Stoics (may make good reading to pick up a copy of Meditations by Marcus Aurelius, get a recent edition if you can, perhaps this one https://ryanholiday.net/meditations-interview-with-gregory-hays/ ).

https://dailystoic.com/meditations-marcus-aurelius/

5. Your Rational Mind is Your Greatest Asset
Marcus knew that our ability to reason is what sets us apart from the animals and is an important power that we must use to the fullest. He believed (like all Stoics) that our reason could be used to understand the universal reason present in nature, which would lead to agreement with it even if events seemed harmful. Our rational minds have complete power over our opinions and the mind only experiences suffering when it itself creates a desire for a specific outcome in life.

Marcus—who had more control over his environment than most—was also the pen behind these lines: “You have power over your mind – not outside events. Realize this, and you will find strength.”

Marcus teaches that our mind is a thing that controls itself completely and is separated from the world; it cannot be affected by events unless it makes itself be affected. Every appearance is the result of what the mind wills it to appear to be and the mind makes itself exactly what it is. Since this is so, there is no reason we should not agree with nature, since nature has provided us with the means to rationally accept the course of events no matter where they take us.


Seneca too has many good views:
 
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AnnieP

Member
Joined
Feb 14, 2017
Messages
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Location
I have noticed increased SOB last 12 months and ai
Hi, I'm Jenn. Im 50 years old with a BAV. I was diagnosed 3 years ago with Moderate/Severe. It has now progressed to severe. I am having symptoms such as chest pain and dizziness. My feet and hands go numb sometimes too, I don't know if that's related. My cardiologist is thinking it's time to get this thing fixed. I had a TEE yesterday but it was unsuccessful because my oxygen level keep dropping during the procedure and they kept having to "bag me" to get it back up. Dr took a couple of pics but doesn't think they will be good enough to give him additional information. He is supposed to contact me today to set up the heart cath procedure and to refer a surgeon for me. It is suggesting we do it sooner rather than later. This is going way to fast and I'm terrified.
Hi Jen
I was your age and it’s okay t be nervous it’s the unknown t me now is a good time as your young and will still have good kidney and lung function and your heart muscle wise should be good. I was surprised how much better I felt ost p than I thought I would it still took 18 months to eel completely normal again but I was back to the gym at 4 weeks and work at 3 months I left it until then as my job is long hours and on call. But 10 years on my composit valve functions well and I work full time shift. Good luck !!
 

tom in MO

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Joined
Jan 17, 2012
Messages
1,381
Location
MO USA
Hi, I'm Jenn. Im 50 years old with a BAV. I was diagnosed 3 years ago with Moderate/Severe. It has now progressed to severe. I am having symptoms such as chest pain and dizziness. My feet and hands go numb sometimes too, I don't know if that's related. My cardiologist is thinking it's time to get this thing fixed. I had a TEE yesterday but it was unsuccessful because my oxygen level keep dropping during the procedure and they kept having to "bag me" to get it back up. Dr took a couple of pics but doesn't think they will be good enough to give him additional information. He is supposed to contact me today to set up the heart cath procedure and to refer a surgeon for me. It is suggesting we do it sooner rather than later. This is going way to fast and I'm terrified.
Hi Jenn,

Yes it's pretty scary. But you can do it.

Yet it gets going fast once they determine you need the surgery. However, it's better to plan the operation into your life rather than to have it happen under an emergency situation. Just don't wait to long. Remember you are "choosing life". At your relatively young age, successful replacement of a BAV is the norm.

Good luck!
 

Catie

Well-known member
Joined
Jun 17, 2010
Messages
276
Location
Texas, USA
Hi Jenn,

I'm glad you found your way here.

I'm unfortunately a high anxiety person, and I can certainly relate. One of the heart nurses told me flat out that everyone is terrified of heart surgery. Perhaps some here were able to rise above that, but it helped me for her to tell me it's normal.

So sorry you had the complication with the TEE. I hope things go super smoothly with your cath. I was pleasantly surprised that the cath was not bad at all (I'd had a couple of them in the 1970s--easy peasy nowadays).

I found it helpful to remind myself that surgeons do these procedures every day. It's their bread and butter and they are extremely skilled and brilliant individuals.

Wishing you well on your journey!
 

tommyv44

Member
Joined
Jan 27, 2018
Messages
17
Location
Florida
Hi, I'm Jenn. Im 50 years old with a BAV. I was diagnosed 3 years ago with Moderate/Severe. It has now progressed to severe. I am having symptoms such as chest pain and dizziness. My feet and hands go numb sometimes too, I don't know if that's related. My cardiologist is thinking it's time to get this thing fixed. I had a TEE yesterday but it was unsuccessful because my oxygen level keep dropping during the procedure and they kept having to "bag me" to get it back up. Dr took a couple of pics but doesn't think they will be good enough to give him additional information. He is supposed to contact me today to set up the heart cath procedure and to refer a surgeon for me. It is suggesting we do it sooner rather than later. This is going way to fast and I'm terrified.
Jenn......slow things down a little bit and ask your cardiologist for a script for a cardiac MRI which should provide you with additional in formation and let you know whether or not you need surgery now and please get a few different opinions.....you need to be your own advocate today!
 

JWalters

Member
Joined
May 17, 2018
Messages
16
Location
Williamsburg, VA, USA
0.5 to 2% of the population have BAV. So it is a huge number of people, and the medical industry can reliably address the problems since they so much practice! One thing that relieved my stress was when I looked into the eyes of the Surgeon and the staff, he and they were 100% convinced and confident it was the right decision.
 
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