What were the signs that lead you to OHS?

[Trinalovescats]

For me,I had this huge long cough and my teeth were bleeding for the last year.I was misdiagnosed with Asthma back in November.So,from November til I was hospitalized in April I was short of breath...couldn't walk anymore.

What weee your symptons?

 

[Paleowoman]

Hi - I had no symptoms at all. Back when I was 25 a doctor listening to my chest heard the murmur from my bicuspid aortic valve. Had an echo, not much done. Fast forward to age 53 and seeing a gastroenterologist for a problem and he heard the murmur much more loudly, recommended I see a cardiologist again. Cardiologist said I would need OHS to replace the valve one day. Started annual echos at this point. When the pressure gradient reached severe/critical and was climbing fast the cardiologist referred me to cardiac surgeon for surgery. I was 60 by then. But no symptoms - in fact I felt very well.

 

[Ryanvs]

Around August 2015 I had an episode of heart palpitations that lasted around 7 hours starting around 3am. In hindsight I shouldve done something then, but at the time I had a sick 3 year old sleeping in bed with me. A 4 month old that wouldn't sleep that i had got up to around a dozen times since midnight, and trying to manage a cold by dosing up on very strong cold & flu tablets. This combinded with working all day, I simply put it down to stress, the medications and the amount of caffeine I'd consumed the day before.

Anyway, I started to get weekly episode's that lasted anywhere from around an hour or more. I finally seen my gp in November who referred me to a specialist, however a week later during another really bad episode I blacked out momentarily and had to call an ambulance. 2 nights in hospital confirmed I had a leaking valve, enlarged left ventricle and an enlarged aortic root.

 

[neil]

nothing, went in for a health chk, doc heard murmur told me to arrange to see cardio, I felt as fit as a fiddle

 

[dornole]

Shortness of breath to the extent I couldn't walk up a flight of stairs, persistent long dry cough especially when lying down that eventually progressed to hacking up quarter-sized blobs of bright red blood. Misdiagnosed with "just pregnant with twins" and "asthma" at first. It was only when the urgent care guy asked "how much blood? is it mucus-y or bright red" that I got sent for an immediate echo, was hospitalized, and within 24 hours transferred from cardiac unit to the delivery unit at another hospital with a NICU for an emergency C-section that saved both me and the twins.

My OB-GYN completely missed it. I had similar but not as severe symptoms with my previous pregnancy that resolved immediately on giving birth. According to the Internets, pregnancy is a common time to reveal mitral stenosis. I had zero idea there was anything wrong with my heart. In fact when they sent me for an "echo," I got there before the order did and told them I needed an "EKG" because I thought they were the same thing! They did the EKG, I went home, and they called me back to say I needed to return for an echo. I laugh to think about just how little I knew. The whole experience was very "ya don't say?!" and out of the blue feeling. I was 35 years old.

 

[VWalk]

I had no symptoms either. The Dr heard a murmur on my annual physical in 2006 and sent me to a cardiologist. He found that I had a bicuspid valve with my leakage. I started going to the cardiologist on an annual basis. In 2013, he discovered that I had an ascending aortic aneurysm that measured 4.1 cm. I went to the hospital for chest pains in March, 2016 (first time I ever had a "symptom"). The aneurysm had grown to 4.6 cm. I decided to have "the surgery" on June 21st. The surgeon advised that the aneurysm measured 5.0.

 

[Trinalovescats]

Dornole-
My shortness of breath was so bad that I would have a hard time walking from the front door to my car..the cough towards the end was getting really bad.

 

[dornole]

Trina, if I recall right we both had mitral stenosis (and thus congestive heart failure / pulmonary edema). So that might explain the similar symptoms.

 

[Mellyouttaphase]

I was born with a heart condition and as an adult was asymptomatic as such but the imaging told a very different story. Damn.

 

[ForeverThankful]

No symptoms. I had a very slight murmur all my life and when I went to our family doctor for a yearly exam (it had actually been 2 years between exams) in August 2015 her eyes got big and she said that my little murmur was huge! She sent me for an echo which showed a bicuspid valve problem and a 4.8 aneurysm. She called me and sent me to a surgeon right away who advised to have the surgery within 8 weeks time which I did. Surgery was in October 2015. I should add that the echo technician must not have been very good because the 4.8 aneurysm turned out to be 7.2!

 

[Terr]

Am 53.

In 2015 my endocrinologist decided to do a stress test on me, then when something was inconclusive on it, sent me to do an echocardiogram. After the echo, the office called me and said that everything was ok and I was all clear.

Then, around July 2016 I noticed that at night I would wake up and have problems breathing. No gasping but.. you know how you usually don't think about breathing, but I had to explicitly breathe. So I went to my GP, who thought it might be asthma but sent me to a chest xray anyway. Then she called me said that xray showed heart enlargement and referred me to a cardiologist. Cardiologist prescribed a diuretic immediately (which BTW took care of all the breathing problems) and scheduled an echo.

Echo time - the echo showed bicuspid valve and an EF of 25% (!!!!!!). The guy sent me for a heart catheterization, and while I was in the hospital they did a battery of tests, including transesophageal echo, heart cat scan, then an MRI etc. Talked to me, said that no problems with vessels, but bicuspid valve, stenosis etc. etc. and need an AVR.

Except for that breathing thing I mentioned above that went away with lasix, all this time there were NO symptoms whatsoever.

Anyway, had my AVR on Sept. 14. Bovine. Recovering fine. Still don't understand how it went from EF of 55% (which is what it showed in the echo in 2015) to 25% in 2016, and how the echo didn't notice the bicuspidness of the valve before... At first they thought maybe I had a silent MI that damaged the heart (thus causing the EF drop) but none of the tests showed anything at all like that.

 

[Rachel]

I had heart palpitations almost every night beginning in January of 2011 – didn’t think much about it since my 42 year old brother had just been killed in a bike accident six months prior so I was grieving and I thought I was stressed.

A couple weeks later I blacked out while driving my car

However, after a FULL medical workup including listening to my heart several times and an EKG, the doctor sent me home with a clean bill of health.

The way I FINALLY found out about my heart condition was that one of the blood tests came back positive for hypothyroidism -- and I was pissed off about that – HAHAHAHAHA!!!

So I went into my primary care physician to explain to her that I didn’t have a thyroid condition. Not only did she confirm the thyroid condition, but she sent me to a cardiologist for the mummer she was hearing.

Anyway – it was 3 months from blackout to diagnosis, and I’m most grateful to my primary for actually listening to my heart.

There’s not a day that goes by that I don’t think about how lucky I am to have discovered this condition – how many doctors missed my mummer!!! I had a 5.2 cm aortic aneurysm and was potentially headed for an early death – just like my brother.

 

[LondonAndy]

Shortness of breath for me - which annoyingly started on the very day that the TV news was warning about bad pollution hitting London from the continent, and so initially I thought it was a respiratory thing. Within days I was only able to walk 100 yards before having to stop and catch my breath. After 3 months an ultrasound showed the blocked aortic valve, and another month later I had what I thought was a heart attack but turned out to be a "cardiac event" - intense dizziness, nausea and sweating, but apparently no actual damage to heart. Off to hospital by ambulance, and everything then sorted out.

 

[DougWyndham]

Guess in a way I was lucky After moving to South Africa from Botswana a very attentive school nurse heard a murmur. Turned out to be a bicuspid valve and was monitored for meany years - leading to OHS in Leeds. Yorkshire, UK in 2012 Mind you the swollen aorta prompted surgery faster but without the regular check ups whose to say I'd have made it.
PS I think the NHS in the UK is absolutely fantastic
PS PS : the school nurse was also amazing and I wish I knew her name

 

[epstns]

My story actually started about 11 years before my surgery. I noticed, at age 52, that my running times were slipping and my exercise tolerance was diminishing. I had a complete physical and my internist said "All is normal. You're getting older. Get over it." I wasn't satisfied, so I pressed for a referral to an endocrinologist to check thyroid, hormones, etc. The endo, bless his heart, did another physical. He then, very seriously, asked me "How long have you had the heart murmur?" When I regained my emotional senses, we talked about it. He heart a very pronounced, late-peaking murmur and advised me "I don't want to alarm you, but I advise you to have this evaluated sooner rather than later." I went to see a cardiologist, had an echo, and was diagnosed with moderate to severe aortic stenosis. That lead to a couple of cardiologist changes and ultimately my most recent cardio (about 10 years with him now) told me "I won't have to tell you when it is time for surgery. You will tell me."

He was right. After a total of 11 years in The Waiting Room, I told him "I'm tired of being tired." My only real symptom was increasing fatigue, but it was time. Had the surgery, hit all the speed bumps in recovery, and I'm still here to gripe about it.

 

[David W]

A car drove into me at 35mph when i was cycling in London. Rushed to the hospital and after a last minute scan i was told that in addition to go home and get some rest i would also need OHS...........charming!!

 

[jwinter]

The first time I thought I had a virus. Fatigue and shortness of breath were the worst I have ever had. After dragging around for two weeks I was making the bed when I went down. Blacked out, woke up, ambulance to nearest hospital in AZ where we were staying. The on call Cardiologist didn't find it. The sweet little gal doing an ultrasound on my chest found it (I was on life support by then) helicopter to Las Vegas where I went down again and I was out until after surgery.
This time I had complete cardio work up in February in AZ. Traveled to MT in April and shortness of breath shortly after. One day I started hyperventilating and went to local small clinic where I was told to calm down and breath into a paper bag (loved that) Sent home with a calm pill of some kind and before we got home they called back and said my hemoglobin was 6. Air flight to Billings, 3 units blood transfused, and the attending Cardio found my problem. They wanted to do a TAVR first, then open heart, then decided they were not able to handle my condition so I will have surgery at Mayo in Rochester, MN November 1.

 

[Agian]

Haemoglobin of 6! But why? I didn't know valve problems could cause that.

 

[jwinter]

Agian, They are not really sure yet. There is a condition that the valve somehow "munches" the red blood cells causing this to happen but the test was negative for that. I have other issues that all came about after my first valve but it appears to all go round and round between my heart, liver, and the abdominal aorta. I was hoping to get answers to this at Mayo Clinic as I had full cardio and liver work ups done. It has been trying the last four years, being thrown into open heart surgery ( I even told them, No it just can't be) and then starting two months later I develop esophageal varices, have two vomiting episodes that landed me in hospital getting the varices banded, then they biopsy my liver (all clear) and in between I have been transfused 3 times. Where IS the blood going. No one knows.
All I know for sure is I hope getting this valve helps as one cardio surgeon said my tissue valve was too small also. Could that have caused it all? I have to let go of yesterdays going forward as the only person that gets upset is ME.

 

[Paleowoman]

two months later I develop esophageal varices, have two vomiting episodes that landed me in hospital getting the varices banded, then they biopsy my liver (all clear) and in between I have been transfused 3 times. Where IS the blood going. No one knows..

When I read that I kind of freaked because there was another forum member here, don't know if she is still around who had issues with an obscure bleeding problem which wasn't investigated fully prior to surgery. She was given a mechanical valve and then had massive, massive problems with bleeding post surgery for many months, several transfusions, bcause the warfain aggravated the bleeding problem (search for posts username harrietW ). I don't know what's happened to her now, if they've been able to stabilise her.I do hope you have had thorough investigations.

All I know for sure is I hope getting this valve helps as one cardio surgeon said my tissue valve was too small also. Could that have caused it all?

My tissue valve is a bit too small for me, presure gradient in the moderatley stenotic range after only two years, with mild left ventrocular hypertrophy. No issue with anaemia though.