Survey on Symptoms, Please Answer

[KimC]

Hi,

If you didn't/don't have SEVERE valvular insufficiency when you first saw a cardiologist, WHAT led you down the path to see a heart doctor, (besides a known congenital condition)?

My cardiologist said that every case is different, but most people don't have symptoms until the valve leak is severe, and even then, some people don't have any symptoms ... I'm curious and would appreciate your input.

Many thanks,

Kim Caroline

 

[Ross]

For me it was tiring very easily and breathlessness more then usual.

 

[RunMartin]

Hi,

I was training for a marathon in 1986 and I was training really hard for it. A few weeks before the marathon I was on a training run and suddenly felt a lack of power/breath etc. The day after I started getting chest pains (tighness in the chest) when I ran. I saw my local doctor but could not find anything wrong. I had a disappointing run in the marathon compared with what I was achieving in training. I found it difficult to run for several months. The feeling was that of a chest infection/virus. I kept going to the local doctors but they could not find anything wrong (one thought it was astma). It took me several months to get back running again. Eventually my doctor did an ECG in 1987 and told me I had thickening of the heart walls?. I was sent to a heart specialist at Wythensawe Hospital Manchester (England) and was told that I would need a new valve with in the next six to twelve months. I also went for an angiagram. The doctors said it is a congenital defect (only two out of the three cusps working - the other is deformed). Eventually I started to run OK again (but not as quick as before!) and the doctor told me to keep on running. It was almost as if I had to learn how to run again. Sixteen years later I am still running and do not feel short of breath etc. but it is now time for the valve to be replaced. I probably would not have known anything about the heart valve but for running. I have moderate valvular insufficiency.

Martin

 

[BillCobit]

Kim -

My GP heard a heart murmur long before I had any complications, and advised me to get an echocardiogram. The echo showed mitral valve prolapse w/ trivial leak, and I was advised to get follow-up echos every few years. Twelve years after the murmur was first detected, and after a month-long "mystery illness" (endocarditis had been ruled out; bad diagnosis), the valve was significantly noisier and leaked more. I started getting annual follow-ups that showed more bad stuff - heart enlargement, falling ejection fraction, more regurgitation. Surgery was finally indicated when I reached a point where there was fear - mostly on my part - of irreversable heart damage if there was no intervention.

BTW, I was considered to be asymptomatic. So even though ejection fraction and heart dimensions indicated surgery, there was reluctance on the part of the docs to pull the trigger because I was very active without apparent problem (nobody was impressed with my awful triathlon times - "some people just suck," said one doc - LOL).

After I read that leading heart centers and their docs were much more inclined to do earlier intervention in order to preserve heart function, I visited the Cleveland Clinic. Docs there agreed it was time for the operation. Almost 2 years after surgery, leak and murmur are gone, heart dimensions are now solidly within normal ranges...and I STILL suck at triathlon!

...so that's my story.

Bill

 

[Yokena]

Pre-Surgery Symptoms

Pre-Surgery Symptoms

Hi! I'm responding even tho I did have a known congenital defect. I had been told it was no big deal and hadn't even seen a cardiologist for twenty years. I just thought I was short of breath and tired all the time because I was middle-aged, overweight and out of shape. The nurse at work took my blood pressure and it was stroke level. That's what started the ball rolling towards surgery for me.

Joyce in Mississippi

 

[bvdr]

Hi Kim,

I was going to make an appointment because of extreme fatigue, shortness of breath, and recurrent irregular fast heart rate. I ended up in ER before I made the appointment with very rapid atrial fib.

That was about a year ago. My first echo showed mild mitral stenosis, mild mitral insufficiency, Moderate aortic insufficiency, and Moderate tri-cuspid insufficiency. Also pulmonary hypertension and an enlarged left atrium. By the time I had MVR in August, the MS and MI were both moderate and the surgeon said the leakage of the aortic valve and tri-cuspid was more like trivial.

I had only a faint murmur.

 

[Nancy]

My husband's aortic valve replacement was done because he passed out playing basketball. He knew he had had rheumatic fever, and was being followed by a cardiologist, but this was almost 26 years ago, and they didn't do as much testing as they do now. So that did it for him at that time. Surgery followed in a couple of weeks.

His mitral surgeries were done because he was extremely short of breath even at rest, extremely fatigued, felt faint and had rampant CHF which could barely be controlled.

 

[MelissaM]

Bacterial endocartitis led me to see the doctor. After that resolved, it was monitor, monitor, monitor.

Biggest symptoms were exercise intolerance and fatigue. Upon excercising, I would go numb in my right arm and hand and would want to take a nap immediately following anything that I did.

At this point they noted my regurge as 4+ and sent me in for surgery.

Melissa

 

[cookie]

When I think back, the only symptom was heart palpitations. These were being chalked up to Menopause until my GP heard a heart murmur on a routine exam. Was sent to a cardio, an echo was done and the aneurysm and aotic valve prolapse was discovered. Was monitored for 2 years and surgery was scheduled. The rest is history!

 

[fyrfytr]

I have known for years about my aortic stenosis with a bicuspid valve. But it was April 1, of this year I was on duty at the Fire Station. We were on a structure fire when I had severe chest pain. I was taken to the ER and my Dr. suggested that I have a Angiogram done to see if I had any blocked arteries. On April 11th, I was taken to Poudre Valley Hospital's Heart Center and I talked to the Cardiologist that was going to do the angiogram and I told him about my aortic stenosis and he said that he would also check that. They found that the stenosis had gotten worse and also found the aortic aneurysm. I had the surgery on April 21st.

Dave
_________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[Heather Fisher]

Kim,

I knew for years about my aortic stenosis and bicuspid valve. I could have sworn I had no symptoms prior to the time was told I needed surgery but my husband noticed a gradually increasing fatigue in me. He was worried long before I was told surgery was necessary.

Heather

 

[McCln]

Kim

Kim

I was born with a defective aortic valve, refers to as a murmur. But with two bypasses, the second with the valve replacement, I feel a lot better and feel more my age. Thanks for asking. And your doctor is correct, no two people with the same severity feel the same symptoms. Take care.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Lorraine]

Hi Kim,

I never even knew i had a heart murmur. In January of 2000 all I noticed is that my ankles would be swollen when I got home at night. I was also finding it harder and harder to take the train everyday and keep up the pace of walking and keeping up with all the train commuters without getting out of breathe. My family doctor was treating me for asthma even though the inhaler wasn't really helping me.

In August of 2000 I had a nose blled that wouldn't quit and I ended up in ER. They told me I had high blood pressure and gave me nytrorclycrine tablet. I didn't believe it though cause my blood pressure has never been high, though I do smoke.

By Oct of 2000 I couldn't walk up a flight of stairs without trying to catch my breathe for 10 minutes. By that time I had quit smoking for a while. I also was getting more and more fatiged.

Finally Then my family doctor sent me to a pulmonary doctor who sent me to see the cardio. So in mid November I finally found out after an angiogram what my real problem was. Blew me away. I had MVR & AVR and triscuspid repair on March 8th, 2001.

No one in my family has had valve related issues. My Dad did have heart problems though. They wanted to do a triple by-pass in 1974 and he wouldn't do it. He died in his sleep in 1978 from a massive heart attack.

I did mention to my doctor since when I turned 40 though that I had wanted him to test me for any heart related issues and he thought I was too young to be having any of those type of problems. One just never knows what may be going on in our bodies!

 

[ccrawford]

I was experiencing temporary episodes of blindness in one eye that would last for about a minute. Turned out these were caused from micro embolysms (mini clots) that were breaking off from a larger clot in my upper carotid artery, presumably generated from my bad aortic valve. I'm one of the few people who experienced Coumadin before valve surgery - lucky me ! Chris

 

[medtronic of borg]

taking part

taking part

overly fatiigued this last time. I was also born with severe as/ai .

 

[Marcia]

symtoms

symtoms

When I was diagnosed 20 some years ago I was just extremely tired and having irregular heartbeats. Was sent to a Cardiologist who put me on Inderal and a diuretic. This all helped until a couple of years ago when I was fatigued all the time along with shortness of breath and a tight feeling in my chest. I also had a couple of toes that would turn blue by the end of the day. This is all gone. The 6 mos prior to surgery, I had 3 bouts with upper respiratory infections. I feel so much better after the replacement.

 

[carlapv]

I had been diagnosed with severe asthma in 1993. for two years I was taking massive doses of steroids and not getting any better. In Feb of 1995 Went to pulmonary specialist and he said chest xray showed that my heart was enlarged and sent me for a cardiac consult. the cardiologist suspected mitral stenosis and insisted on cardiac cath immediately, where i was disagnosed with severe mitral stenosis. Had valuloplasty 10 days later. Did well for several years then noticed fatigue and sob. Now need both mitral and aortic valves replaced.

Carla

 

[Bunny_Rabbit]

Hi Kim

Hi Kim

My symptoms started with fatigue and just general tiredness. Eventually I would have episodes of coughing and severe SOB when I was laying down. My family doctor thought I may have some sort of chest infection and put me on inhalers. After a few months I knew it wasn't getting any better and asked for a chest x-ray. That's when my heart problems were realized.

I've had a Valvuloplasty done and the coughing and SOB while laying down have stopped. However I still have the general tiredness and fatigue.

 

[Bill Hall]

Kim - I always said that I didn't have any symptoms, but did notice being more tired playing softball, especially when I ran fast. I noticed only in the last summer before surgery.

 

[Simon Gee]

no symptoms - just lucky!

no symptoms - just lucky!

I discovered I had a bicuspid aortic valve when I started a new job and was sent for a medical with a local doctor. He listened to my heart and advised me to consult a cardiologist immediately. My heart was severely enlarged but still working perfectly, hence the lack of symptoms. I had an AVR in 2000 and am still in the same job!!

Best regards to all from England,

Simon