Aortic Stenosis & Valve Replacement

Congential heart defect( bicuspid aotic valve) I was born with and never knew I had, also a heart murmer. I never had any problems as a child. I swam competitively until my late teens. Fast forward to today, Male 52 years old fairly good health. In 2016 I was diagnosed with bicuspid aortic valve stenosis after experience loss of energy, fatigue, chest tightness, shortness of breath, sometimes doing minimally everyday tasks.
I' ve had two echos, heart cath, two treadmill stress tests. Since the first tests, until the most recent testsJanuary 2019 my stenosis is showing worsening. My cardio has suggested I need to have valve replacement surgery in

Welcome to Connect @tjmcdon. You may notice that I moved your message and combined it with this existing discussion on "Aortic Stenosis & Valve Replacement" as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some more information from Mayo Clinic about aortic valve stenosis https://www.mayoclinic.org/diseases-conditions/aortic-stenosis/symptoms-causes/syc-20353139
I’d also encourage you to view this video on Connect where Dr. Joseph Dearani, Chair, Cardiovascular Surgery, and Dr. Juan Crestanello, cardiovascular surgeon, talk about heart valve disease and surgical options: https://connect.mayoclinic.org/webinar/video-qa-about-heart-valve-disease-and-surgical-options/

Besides members in this group, I’d like to introduce you to a few others whose insights might be helpful to you; please meet @degarden_girl @yoanne @twocents @lynnw @camaroyo @yorlik

@tjmcdon, are there any aspects about heart valve surgery that you have questions about?

My original post got cut off some how. Here it is....
I have congential heart defect( bicuspid aotic valve stenosis) evidently I was born with this
( bicuspid aortic valve) and never knew, also have a heart murmer. I never had any problems as a child. I swam competitively until my late teens. Fast forward to today, I'm a male 52 years old in fairly good health, some cholesterol
issues, but under control with a statin drug. In 2016/2017 I was diagnosed with bicuspid aortic valve stenosis, after experiencing loss of energy, fatigue, chest tightness, some light headedness/ dizziness and shortness of breath, sometimes just doing minimally everyday tasks.
I've had two echos, heart cath, two treadmill stress tests.
Since the first tests, until the most recent tests in January 2019, my stenosis is showing more narrowing. My cardio has suggested I need to have valve replacement surgery( mechanical valve) in the next 3-6 months and has recommended a surgeon along with more testing. Im overwhelmed at the thought of facing open heart surgery... what is my life expectancy without having the surgery? 3-5 years? I have alot to digest right now. What question should I be asking? Very overwhelmed.

@tjmcdon Welcome to our caring group .I'm Lioness and in 1996 I had open heart ,Triple by pass it you have faith in your Cardiologist don't be afraid they do a good job. My friend had a valve replacement with the pig valve no problems I hope this reasures some .

@lioness, thank you, I really need the support right now at making the hardiest decision(s) of my life.

@tjmcdon I understand but look at the alternative Best wishes

Welcome to our caring group... Some of us are not as PC as others... I had EXACTLY same as your issue and had open heart surgery to replace mine 9/10/2018. EXACTLY!!

I joined, like you, a short period before my surgery...

I wrestled thru hi school - if you know about 6 minute wrestling you know there is nothing more strenuous to heart than that. I got a scholarship to college as wrestler after 29:1 season as sr in hi school. NO SYMPTOMS. Call it a genetic 'defect' if you must, but I disagree. YOU and I both know we survived all these years without a 'defect' getting in our way. YA, a two-fer instead of a three-yer lets less blood thru each pump, but it didn't bother us our whole lives! I do not call it a 'defect.' 'snuff said on that.

Fast forward to 2018, your story is IDENTICAL to mine. IDENTICAL @tjcmdon! Then in 2018 FAMILY DOC says OMG!!!! the burber I heard first 2 yrs ago and made you take an echo is WORSE! YOU WILL DIE IF YOU DON'T DO WHAT I SAY. Sure, latest echo showed significant less flow, etc, then 2017. Cardiologist told me I had equivalent to a drink straw worth of blood going through each pump!

OK, OK,... well in my case - after 10 years as black belt in karate and competitions (what was that about being a defect??) - AND NO ADVERSE ISSUES, I developed hip pain. Slowed me down! to point I walked less and less, did things SLOW. I HAD NO FREAKIN CLUE my heart was slowing down too due to this bicuspid thing and hardening up (stenosis)... I had no clue of the heart issue 'cuz I slowed down due to my stupid hip! But 1 week before surgery I had to go to ER for racing heart, skipping beats, sweating like a pig (probably 2 cups in 30 minutes)... OK, perhaps I DO need this heart valve replaced after all...

Did it, hip still hurt, so I felt NO BETTER AFTER SURGERY. Dah... began physical therapy for the dam hip, getting better, and guess what? No shortness of breath, energy not an issue. so guess the heart valve replacement made that (apparent to me) none issue go away.

DO IT. JUST FREAKIN DO IT!!

You have no alternative...

You are younger than my 66 yrs so you get the mechanical valve instead of pigskin (think football) version I got. So you get to take blood thinners but you have no choice.

You can do it or not. Not and watch your life terminate or begin downhill as your heart begins not being able to pump enough. Perhaps if you can make your hip hurt so bad you slow down naturally you can put it off as I did another 5 years? Sound like a plan?

YOU ARE NOT ALONE. MANY OF US HAVE BEEN THERE, DONE THAT. Mechanical valve said to last the rest of your life. finished, done.

GO FOR IT.

BTW, I see medical technology improving, & 10-15yrs from now them coming back to you and replacement that mechanical gadget with something else, thereby stopping your blood thinners and improving you once more...

PS: Only advice I can give you - other than DO IT before too late - is research your Dr/hospital... do not kick yourself afterwards for not allowing one of the best to do it... If something bad happens that would not have if you have picked a top notch Dr & hospital! I THOUGHT our local hospital with its fancy heart addition was in top 10... found a few days before surgery they were down at like 75th in ranking for this in my state... I began second guessing my decision: if not for having a wife who believed in this particular hospital I would have called it off and scheduled to #1... I got lucky and got a great surgeon who excelled at aortic valve replacement! Instead I gave my 35yr experience surgeon the privilege of being able to say he finally got to use the largest aortic valve replacement in the kit (29cm)! And letting him brag he used more wire on putting my chest back together than any in his whole career. (Ya, I AM a big guy 😉 )

DO IT! STOP QUESTIONING IT!

Hello @tjmcdon

I can understand your concerns regarding heart surgery. Like @lioness said it has become more of a routine procedure now. I have been faced with this same situation and I would like to share with you some of the questions or procedures that I have followed:

1. Always get a second opinion before considering surgery.
2. Question your doctors as to how many of these procedures they have personally done.
3. Do a little research and find out which medical facility and doctors have the best experience with these types of surgery, (i.e., is their a heart center at a university medical school where you could go for your second opinion?).
4. Why is the doctor suggesting a mechanical valve rather than a pig valve (mechanical valves depend on the use of blood thinners after surgery while pig valves often do not).

I wish you well as you make an informed choice both to the surgery and where and who performs the surgery.

Will you post again and let me know how you are doing with the decision process?

My husband learned in late 2016 he had an enlarged heart valve. He was prescribed statin. In 2017 he had echo that showed bicuspid aortic valve, aortic stenosis and aortic aneurysm. He was told they would monitor each year for size and explained symptoms to let them know. In 2018 had echo the tech asked if he was light headed or dizzy as his heart rate was 40. He said no. The NP said watch and wait. After that I noticed he was fatigued, sometimes he would get lightheaded when standing, sat to rest when out, etc. He always told me he was good. In February 2019 we took him to ER as diabetes was high, fatigue, fell into chairs, etc. The doc found he had a silent stroke at some time. Neurologist did so much work up for her purposes and other doctors. Had event monitoring for 30 days. Had to call for finding after 1 1/2 months. Received message from cardiologist office RN that said fine. In may we called 911 cuz he fell and then passed out cold with eyes open. The ER said all was okay and PC and hospitalist didn't think he needed to be admitted. BUT, they kept him for three days to monitor. Found out after he was in telemetry. Went for follow up this week he is now hypotension and bradycardia. Has another event monitoring now for 30 days and was told he would have echo-tavr test. Not sure what is happening. Any thoughts?

Hello @elina1, welcome to Connect. You may notice I combined your discussion with another discussion titled, "Aortic stenosis & valve replacement." I did this so the other members on Connect already discussing aortic issues would see your message and have a chance to share their thoughts with your post, and so you could read through some of the messages already posted as well. If you are replying by email, you can click on VIEW & REPLY to see where your message is now located and so you can read through previous messages.

@elina1, while we wait for other members to join, would you mind sharing what the current event monitoring is looking for? Has your current provider shared with you what they may be looking for?