How did you discover your valve issue?

[Mr V]

Just wanted to throw this out there. I got my ST Jude mitral valve in1996. Was 35 at the time. After shoveling snow started to feel a flutter. Had them before but not as long as this one. Went to the Dr. and heard a murmur. When I had the TEE showed severe regurgitation and all my chords holding the valve were broke. I think it had been going on for awhile as they term my left atrium enlargement as severe. Think it was hereditary as when my grandfather passed away they said it was the biggest heart they had ever seen. Thinking he had valve issues too that were never found. Lived into his 70's though. He lived in a small rural town and died in the 1970's.

 

[pellicle]

I was diagnosed young, about 5 years old

 

[Chuck C]

Hi Mr. V.

At age 50, I was getting a physical exam, as required prior to a boxing match. My doctor picked up a murmur and referred me to cardiology to get checked out before he would sign off. The cardiologist wanted to run several tests, including an echo. I had not yet hit my deductible yet and all the tests were going to set me back a few thousand. I really wanted to fight, so I tried my luck at another doctor's office who did not detect the murmur and since all my vitals were good and I did well on the stress test, he signed off and I had my match.

About a year later, I had eye surgery and met my deductible, so I decided it would be a good time to revisit the cardiologist again and get all the tests done. The echo picked up that I had moderate aortic stenosis and a bicuspid valve.

 

[Mr V]

Wow. Both boxing at 50 and with a bad valve.

 

[Chuck C]

Wow. Both boxing at 50 and with a bad valve.

My boxing career was short lived. I had my first match at age 50, then my 2nd one at age 51. It was a lot of fun, but thought it best that I retire from boxing, especially after my mechanical valve. Warfarin and boxing do not go together well.

 

[Superman]

Less than a year old. In the hospital for some illness I think and still had a murmur strong enough that warranted further testing. Always understood that I had aortic stenosis from the outset. And a leaky valve. Best of both worlds i guess.

Followed every six months to a year from that point on. I’m 48 now. Had my valve replaced at 17 in 1990 and aneurysm repaired at 36.

 

[dick0236]

My mother said I was born with a heart murmur. I had Scarlet Fever at age 6. Some docs think I had a bicuspid aortic valve, some think it was due to scarlet fever (maybe misdiagnosed rheumatic fever).....and some think I probably had both a bicuspid valve and rheumatic fever. No issues until age 30. I had a mechanical valve implanted at 31. Have had no surgery or living restrictions since my original surgery in 1967..

 

[almost_hectic]

I was around 30 and made a few unplanned trips to the ER with a-fib and thought I was dying. Thats when they found the valve issue. Was told it wouldn't be an issue for many years to come. 14 years later was when I was due for surgery. So it was what some would say was a long time, but they had always told me I would be an old man before it was ever an issue. So at 44 it came as a shock to say the least. Didn't consider myself an old man yet.

 

[Beach77]

When I was about 32, during one my final oncology appointments, one doctor heard a slight murmur. He said he could refer me to a cardiologist but since no other doctor had heard it (through 2 pregnancies and my cancer & follow-ups every 3 months), he gave me an option to not to put it in my records. He said sometimes nothing will come of it but something might when I was older. I decided I was done with doctors at the time. About 20+ years later, I asked a new doctor (we had just moved back to San Diego) for an echo stress test. My dad had a major heart attack in his 40's. She reluctantly said okay. (My one and only visit with her) The test discovered a bicuspid valve with a mild regurgitation. The doctor said come back in 10 years or sooner, if I had any symptoms. Then about 15 years later, I started to feel very mild symptoms, the echo and CT showed it had moved to moderate and I was followed every year after. That's when I was told I would need a valve replacemtn surgery sometime in the future. That was about 4 or 5 years ago. In October 2020, at my yearly exam, I was told the valve needed to be replaced. I first wanted a TAVR but in meeting with a few doctors, and the approval of my heart team recommendation, the TAVR or a mechanical would be a good choice for me. The choice was mine, I was 64. It took me about a couple of weeks to decide which one I wanted. I went with the On-X. My surgery was Dec. 3, 2020. It's been almost one year! I've had a great year!

 

[Warrick]

I broke my hand about 15 yrs ago and had to have it straightened and thats when they picked up a murmur, had an echo a few months later. Told over the phone results were everything fine. Went 5 yrs no doctors and then 10 yrs ago this month I had a medical to renew my heavy drivers licence ( medical next week to renew again) and I asked about the echo and was told by my GP how the aortic valve had 2 leaflets instead of 3, and “its nothing to worry about just have it checked in 10 yrs time”. Replaced 4 yrs later lol

 

[Shanith]

At 31

 

[Justmadi]

I was totally asymptomatic until one day while I was on the phone with a customer. I felt such pressure in my neck and head. Ambulance was called, had all day tests at the ER..blood tests, stress test. My back was really killing me. The ER doc said they might send me home..I asked what he thought because I knew something was really wrong.. He said to have one more test, a CT scan. Within MINUTES I was being prepped for surgery. They had discovered an Ascending Aortic Aneurism. Had that repaired with a graft. Year later, another aneurysm closer to valve so another OHS and voila…going on 9 nears with my St Jude.
i look back and think docs missed the dissection I had going on several years earlier. I complained about such gastrointestinal pain at times it took my breath away. They diagnosed acid reflux.now I think it was dissection..imho.

 

[carolinemc]

It was thought I was a twin, double heart beat, before ultra sound. And it was official after I was born and when they discovered my yellow jauntice. Had replacement of the aortic valve at age 36 and been doing good since. it is a St. Jude's valve and take warfarin.

 

[Superman]

Interesting thread. I want to “like” some of the stories, but it feels like, “Yay! You have a heart defect!”

 

[Lynn]

In my mid 40’s when a rheumatologist heard a murmur. After an echo that revealed a bicuspid aortic valve I was sent to an internist (old school, retired soon after) who said I would never need anything done with the valve. A quick visit to the google revealed this wan’t true, so my GP and I monitored it with periodic echos. Stenosis progressed very slowly, until it didn’t. Surgery April 1st at 58, On-x valve and a pacemaker.

 

[Critter]

About 6 years ago I was working out too hard and I became near syncopal. Got checked and found the bicuspid valve with area of 1.3 (moderate stenosis) went to .7 over the course till replaced a little over 7 months ago.

 

[TomM]

Was diagnosed at birth with a murmer. OHS in 1990 at 7 years old. Aortic valve homograft at 17 that lasted only 5 years so repeat Aortic valve homograft at 22- was given the option of homograft, mechanical valve or Ross procedure for that surgery. Last year was feeling a good bit tired after exercise - I played a fair amount of soccer. Then one night last October 2020, in them middle of the night time I heard an unusual swishing noise with every pulse from my heart. My wife listened to my chest with her ear and could hear the noise. Went to GP the next day who sent me to the ER. Initial treatment was for infection of the aortic valve but a trans oseopheagal echo showed my aortic valve was somewhat flapping around in my heart. Had bentall procedure with some of my aorta replaced with Dacron and a mechanical aortic valve inserted. Came out of the surgery which was good in itself. A few days later while still in hospital my pulse dropped to about 23 BPM. I had a pacemaker inserted. When discharged I could hear a thumping noise from my heart. With covid restrictions cardiologist was only able to put a stethoscope on me the following March. It turns out I have a fistula in my heart that I'm told is not much risk. The risk being infection so I have to be careful with my dental care. It can get a bit noisy when at night going to sleep but I'm getting used to it. One year later almost and going pretty well considering what I've had. I go for walks every day about 3 km to keep in shape. I was back in work the following March, working from the desk. It's a change of pace of life for me since the surgery last year but it's given me even more perspective on life than before.....it's good to be alive

 

[Protimenow]

When I was 11 or 12, all of us 7th graders had to take P.E. We had to do some running around the track, and at the end, I passed out very briefly, falling into the kid in front of me (Chris Merlin, FWIW), and he said something like 'watch it.' This was after a doctor cleared me for physical activities. I didn't think much of it, and didn't tell my parents, so the P.E. teacher didn't see or report it to my parents. This was a very brief syncopal episode - probably a second or less.

Through the rest of Junior High and High School, I tried to avoid activities that involved a lot of running. I tried weight training, I did gymnastics. I was a slow runner - probably because I instinctively didn't want to push too hard - when my heart started pumping very fast (or perhaps my blood pressure spiked) I would slow down.

I got through High School as the slow, or lazy, or 'no guts' kid - but I got through.

When I was an undergrad at UCLA, one of the med students heard a murmur - something that all the other doctors missed. UCLA Student Health evaluated it. They concluded that I had an aortic insufficiency murmur that would probably have to be repaired in about '20 years.'

So, in answer to your question, although I had early symptoms, it wasn't until I was in my early 20s that the thing was diagnosed.

 

[Michael O]

Routine physical in April 2021 and the GP just barely picked up a faint murmer - he said it's a little elusive, but considering that there's a little family history, just go get an echo to be sure it's not the beginning of a problem. Got an echo, bounced to a cardiologist (who couldn't hear a murmer, but on the strength of the echo bounced me to a surgeon). On my 56th birthday, the first surgeon said "You need to schedule surgery absolutely as soon as you can." I was floored - no symptoms other than the occasional bout of SoB while sparring. Consult with a second surgeon (at a much bigger hospital) where they said that my 2 year survival rate was estimated at less than 50%. Diagnosis was a bicuspid valve, with evidence of malformed valves within the heart.

Very easily could have been one of those people for whom the first symptom was dropping dead. Instead, I had OHS to repair the internal valves and get a bovine atrial valve put in on August 9. Hell of a 90 days.

 

[MartinF]

Just before my 50th birthday the doctor diagnosed my heart murmur during my yearly physical. I think it was shortly before my 55th birthday I was on an 8 mile run and about 4 miles out I had shortness of breath. Had to walk back. Told my wife I wasn't running well. She said I wasn't running enough. Then ended up seeing a cardiologist. Wife was surprised that I needed to see a heart surgeon for valve repair/replacement. It was my mitral valve, chords were torn. Surgeon thought it was a connective tissue disorder.