Conflicting Stories = Anxiety & Panic for a new "possible" BAV-er

[LauraS]

Wow, so much info for you to absorb. Maybe someone's history with BAV will help. Here's how I got to the operating table. I was diagnosed with a childhood murmer at age 13. In my 20's, I was in an aerobics class and almost passed out. That's probably when I had my first echo. I was told it was just a murmur. At some point in my 40's, my doctor had me wear the holter monitor and did another echo and I was told it was mild to moderate aortic stenosis but not to worry about it yet. It may present problems as I got older. Well, I had a cold when I was 55 and the doctor (who was covering for my internist) did not like the sound of my murmur so off to New York Presbyterian I went for catherization. I was scared to death because the cardiologist told me to be prepared for immediate aortic valve surgery if the numbers were bad. I went home that day and from that point on saw my cardiologist every three months and had an annual echo. This year's echo caused my cardio to do another catherization and he told me on the table that it was time and the valve needed to be replaced and he referred me to a cardiothoracic surgeon. They both told me they suspected a BAV but would not know until they saw it. I was 58 yrs old and was experiencing shortness of breath and dizziness but ignored the symptoms and found excuses for them like I didn't eat, etc. One day I came very close to passing out on the treadmill and I knew there had been a drastic change. I could barely climb my stairs but I blamed everything on "getting older." My valve was extremely calcified by now. I saw the calcification during the catherization which by the way is nothing to fear. It's kind of cool watching the whole test and is totally painless.

I know it's scary to be told there's something wrong with your heart but you have to live your life because you may never need the surgery. Some people go their entire lives without becoming symptomatic. My cardio told me if I said no to the surgery this year, I probably would have lived no longer than two years because of the heart damage that would be done but I had severe Aortic Stenosis by then. That's when you make the decision to have surgery. This is not elective surgery and it was the most difficult surgery of my life. The recovery is easy on some and hard on some. Mine was very hard due to complications.

As for the low blood pressure while exercising, my resting pressure now is 120/68 but when I was in cardiac rehab on the treadmill, it went up to 140/75 and the nurse told me it should go up when you're doing cardio.

Enjoy your holidays and just listen to your body. Come here anytime you want as this forum is so helpful. I was blessed the day I found this site.

 

[Roxx_yer_Soxx]

Wow, so much info for you to absorb. Maybe someone's history with BAV will help. Here's how I got to the operating table. I was diagnosed with a childhood murmer at age 13. In my 20's, I was in an aerobics class and almost passed out. That's probably when I had my first echo. I was told it was just a murmur.

Thank you for this nice response and hello.
I have no murmur at this point...no aortic insufficiency
I have never had a issue while exercising.
I do have respirtory alkalosis when anxious...which causes dizziness & shortness of breath.

I know it's scary to be told there's something wrong with your heart but you have to live your life because you may never need the surgery. Some people go their entire lives without becoming symptomatic. My cardio told me if I said no to the surgery this year, I probably would have lived no longer than two years because of the heart damage that would be done but I had severe Aortic Stenosis by then. This is not elective surgery and it was the most difficult surgery of my life. The recovery is easy on some and hard on some. Mine was very hard due to complications.

Honestly Laura, for me it's scarier to not know exactly what's going on. I either have a BAV or a odd shaped TAV...wish I knew.

Everything about my Echo looks good to me except the congenital BAV or abnormal TAV thing and I don't like that 3.4 size Aortic root.... my cardio seems to care less about it..... but it causes me anxiety. I am only 31.... I know darn well when I am 61, that thing won't still be 3.4

As for the low blood pressure while exercising, my resting pressure now is 120/68 but when I was in cardiac rehab on the treadmill, it went up to 140/75 and the nurse told me it should go up when you're doing cardio.

Enjoy your holidays and just listen to your body. Come here anytime you want as this forum is so helpful. I was blessed the day I found this site.

When I lift weights my BP stays in the 125/65 area... Cardio takes me up a little. Anxiety spikes my BP high more than anything.....a anxiety moment can get me in that 140/80 area.

Enjoying any moment is a challenge for anyone like myself that suffers from anxiety disorder. My mood & day can change from one minute to the next.
Thanks

 

[river-wear]

I know darn well when I am 61, that thing won't still be 3.4

How do you know? I'm puzzled by that, but I haven't researched aortic aneurysms in any detail.

 

[Philip B]

Certain?

Certain?

Twenty-nine years ago I was subjected to my first heart cath procedure. My cardiologist and his cath lab team's initial plan was to use my arm as an entry point rather than entering through my groin.

Their plans changed because they were concerned about what they referred to as my abnormally shaped aorta. They said it lacked a curved arch. Nothing was mentioned about possible defective tissue or any kind of aneuryism. Concern focused on my bicuspid aortic valve. I was certain that my cardiologist was wrong and I never ever bothered to see him again. I was so certain that I refused to see another cardiologist or have my condition monitored for twenty-seven years.

Twenty-seven years later, tests indicated that I had developed a 5.8 cm aneuryism and I needed an immediate repair job. Yes, my aortic valve was showing signs of major wear and it was convenient to fix everything in one trip. By the way, there was no absence of curve in my aorta...defective tissue had simply allowed it to stretch to a huge diameter.

I sincerely hope you're right about hitting age 61 with little change in the size of your aorta. The problem with being certain is that it can result in one being bitten really hard if things change.

So, you're not one of those "sit around and wait" types...don't wait...follow your cardiologist's advice to have your condition monitored and get on with your life until it's time to have something done. Maybe you'll be one of those lucky folks who lives out a normal life without ever developing a problem major enough to require a surgical fix.

-Philip

 

[jjay32]

Everything about my Echo looks good to me except the congenital BAV or abnormal TAV thing and I don't like that 3.4 size Aortic root.... my cardio seems to care less about it..... but it causes me anxiety. I am only 31.... I know darn well when I am 61, that thing won't still be 3.4

A 3.4 root sounds about normal to me. IF memory serves me anything below 3.7 is considered normal. A BAV means you have 2 flaps instead of three, nothing more.

 

[Roxx_yer_Soxx]

So, you're not one of those "sit around and wait" types...don't wait...follow your cardiologist's advice to have your condition monitored and get on with your life until it's time to have something done. Maybe you'll be one of those lucky folks who lives out a normal life without ever developing a problem major enough to require a surgical fix.

-Philip

Phillip- Thank you for posting in my 2 threads.
Yeah.... I've got to calm down.....my thoughts are if there is something "abnormal" about my body.....lets fix it this afternoon.

Surgery is scary.... but the idea of thinking about this for the next 30-50 years is even more upsetting to me...... as it stops me from going out and doing things now.

It's hard to picture myself 20 years from now at 51 still worrying about this.

I guess this BAV? crap is just going to be my thing..... everyone has their own cross to bear I guess. I went and had every medical test done..... I wasn't going to be happy until they found something...... but what is extra dumb is that the symptoms I experience (Dizziness and general anxiety) my docs tell me cant be from a abnormal shaped AV that shows no insufficiency or stenosis.

Hindsight. I should have passed on having 15 different tests ran.

 

[Maryka]

I am not trying to scare anyone unnecessarily. I was under the impression that the "normal" size for an adult aoeta was 2 CM. (I took college Human Anatomy in 1967). Anyone know the current "normals" are for the aorta?

My anneurysm was discovered at approx. the 4.2 range, with no known bad heart valves. I was diagnosed with Marfan (later "Marfan-like") and treated aggressively with beta-blockers and aerobics-and-lifting restrictions. It slowed my anneurysm for almost 20 years. By then the bicuspid aortic valve manifested, but my followups, betablockers, and restrictions extended my life.

 

[Roxx_yer_Soxx]

I am not trying to scare anyone unnecessarily. I was under the impression that the "normal" size for an adult aoeta was 2 CM. (I took college Human Anatomy in 1967). Anyone know the current "normals" are for the aorta?

I have 2 different cardios.....

One calls 2.0-3.7 normal
One calls 2.2-3.9 normal

 

[Philip B]

Normal?

Normal?

My surgeon told me my aorta should've been roughly the diameter of a nickel.

I don't know how large a nickel is, but I did lay a nickel on a metric ruler prior to my surgery and was shocked to see how much larger 5.8 cm was compared to the nickel.

My discussions with my surgeon concerning setting a date for surgery took a quick turn when I realized how big my aneuyism was. My efforts to wait a few more months before having surgery seemed pretty reckless.

Looking back, I spent a lot of effort avoiding being monitored for twenty-seven years. The monitoring stuff probably wouldn't have changed much other than maybe moving my surgery date up a few years to avoid pushing the envelope as much on the aneuryism repair.

Now that repairs have been made, I'm in monitoring mode. An echo once a year and a visit with my cardiologist once a year is no big deal. Of course, I monitor my INR on a weekly basis and other than hitting my finger with my lacing device that's not very painful either.

-Philip

 

[Bina]

In the world of metric measuring..... 2.5 cm = 1 inch.
So, imagine an aneurysm of 5 cm is equivalent to 2 inches.

 

[Philip B]

What Cross?

What Cross?

I never really considered having a bicuspid aortic valve as a cross to bear. It never stopped me from pursuing any activities that I wanted to do.

Others may report different experiences, but I haven't encountered any limitations since repairs were done. A mechanical valve, dacron aorta, and daily dosages of coumadin have no limiting impact on the activities I pursue.

Sure, open heart surgery is frightening. I suspect that's because many of us tend to get hung-up on the potential negative things that can happen rather than on positive outcomes. Been there...done that...and I'm over it.

Life's too short to get hung-up with negative perspectives. If your valve deterioriates or an aneuryism develops in your aorta, those problems can be fixed. Most of us here are evidence of this.

-Philip

 

[Superman]

Somehow you need to find a way to relax and let this go. It is what it is. Right now you might have a possible malformation of a valve that is functioning normally. As long as it continues to function normally you have nothing to be concerned about. With this defect, progression is typically slow enough that you won't have anything to worry about for a number of years.

For comparisons sake, I was born with a strong murmur and followed by a cardiologist every six months to a year from the time I was nine months old. They were already using words like stenosis and regurgitation even at that time. I had my first heart catherization when I was four years old. Discussions of surgery came of very early on. I was not allowed to participate in any organized sports or in gym class at school. I had additional heart cath's at 12, 15, and 17 years old. They still managed to hold off until just before my 18th birthday to replace my valve.

After my valve was replaced (a couple years after) I took up running for the first time. I managed to complete a 25k when I was 27 years old. Not fast, but finished before they closed the finish line.

I still hadn't heard of the connection between a biscuspid aortic valve and an aortic aneurysm. Fast forward another 10 years and continued annual check ups with my cardiologist. Just this year my echo revealed and aneurysm at 4.3 cm. A CT was ordered with a more precise measurement showing 4.9cm. I went ahead and had it repaired with a graft in October of this year. The reason I went ahead is because it grew over 1 cm in a year and I didn't want to chance the speed with which it was growing. In some circles, 5 cm is considered operable in patients with a history of BAV disease. In non BAV patients, they typically wait till 5.5 cm. 4.9 cm with a high rate of growth was enough for me.

Even with all this, I don't have that much anxiety about my cardio health. It is what it is. I've learned to live with it. I would love to trade my diagnosis for yours any day of the week.

You've acknowledged that anxiety is your bigger issue. Focus on getting that treated and take comfort that your heart is functioning perfectly normal.

 

[james]

So since you came here looking for advice I am going to give you some.
1) For your heart, go see a cardiologist yearly and hope you never see the knife.

2) You seem to have some serious control issues that lead you to experience frustrating anxiety. Go get help for that. Maybe therapy or spiritual help. I assure you that you will never control the information you find out about health issues and that you get one time here to actually live. Do not be afraid of doing so.

 

[Trinityheart8891]

Roxx,
I second superman, I'm 23 years old, and have known about my BAV since I was 2 mos old, I've already had 2 OHS, looking at at least 1-2 more in the future (within 5-10 years) for multiple heart defects, I have gone through anxiety issues, its common with heart issues, but one thing that I have learned is the time between now and then is LIFE, you are blowing it away by obsessing on this...a bunch of "IF'S" I was told at the age of 20 that my mitral and aortic valves will need repairing/replacing within 5-10 years, since then I've gone to college, and become a respiratory therapist, bought a bike, and ridden in my first 12 mile race, I live with these issues every day, knowing whats coming, but I still live my life, working, riding my bike, and generally just loving my life, if I spent time worrying and obsessing about future surgeries/if's I'd be seriously depressed and anxious

yes, you need to be AWARE of whats going on, but stressing/anxiety is only DETRIMENTAL to your heart health, really, you have better things to worry about, IF your POSSIBLY defective aortic valve goes bad, you'll know it cause you are following it like you are supposed to, if your aortic valve doesnt go bad and you spend your life stressing and worrying and generally not living your life you are really going to regret it knowing how much you missed out because your aortic valve could have gone bad

I know this is coming from someone who is tons younger than you, but I've got much more heart health experience than you'd think, trust me, been there, done that, it sucks to hold off for no freaking reason then regret it...

hope things straighten out for you, PM me if you'd like

 

[Roxx_yer_Soxx]

I know this is coming from someone who is tons younger than you, but I've got much more heart health experience than you'd think, trust me, been there, done that, it sucks to hold off for no freaking reason then regret it...

hope things straighten out for you, PM me if you'd like

Excellent and informative post.
31 -23 = 8 years
I wouldn't say you are TONS younger.

 

[MrP]

Depending upon which two cusps are "fused" together out of three possibilities, I believe studies show only one combination at high risk of aneurysm, although lifestyle choices may affect anyone (smokers, ,etc). And all BAV patients have larger sized aortas than the normal population. As we age, aortic diameters naturally increase in size in everyone. Your 3.6 cm aortic root may never require surgery.
All my best,
MrP

 

[witzkeyman]

personally, I think you'll know when it's time. for me, I couldn't sleep at night. I always needed the A/C blasted, couldn't breathe in unventilated rooms, became angry quicker, and then passed out a couple of times.

 

[Roxx_yer_Soxx]

Depending upon which two cusps are "fused" together out of three possibilities, I believe studies show only one combination at high risk of aneurysm, although lifestyle choices may affect anyone (smokers, ,etc). And all BAV patients have larger sized aortas than the normal population. As we age, aortic diameters naturally increase in size in everyone. Your 3.6 cm aortic root may never require surgery.
All my best,
MrP

Hi MrP-

I supposedly either have bicuspid, or a TAV with large left & right cusps and a small coronary cusp.

Last Echo called Aortic Root 3.4 with no insufficiency....normal color flow.

Hope you are right about the no surgery part......

My bill to the psychiatric department at the hospital would be a lot less if i knew that for sure......

but of course: there are no guarantees.

 

[MrP]

Just do what you enjoy in life..exercise, run, swim, fish, golf, work, whatever...you'll be fine. Maybe stop reading this forumfor 6 months to a year. All my best, MrP

 

[Jeanie]

I just ran across something mind-blowing, which could mean that Roxx's anxiety may have a physical not mental cause. Take a look via search engine at something called Dysautonomia. (My apologies for not knowing before that there is such a thing.)
Jeanie