How did you discover your valve issue?

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Cactus52

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Oct 10, 2017
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Atlanta GA
I had an irregular EKG in a FAA medical. Turned out it was a Left bundle branch block. The FAA decided to run the gamut so I had a nuke, cath lab and echo and discovered it in the echo.
 

Paleowoman

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I was 25, I had a chest infection and went to a GP - GP listened to my chest and said "you have a heart murmur" but in such a voice that he thought I already knew about it. I didn't. I was referred to a cardiologist who guessed it was bicuspid aortic valve from the sound, had echocardiogram which kind of confirmed that. Fast forward to when I was 53 - saw a gastroenterologist who, when he listened to my abdomen, heard the murmur and said I should see a cardiologist again. I was then followed with echos annually until I was 60 when cardiologist referred me to a cardiac surgeon and I had AVR.
 

sharky7

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Mar 18, 2015
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miami, fla.
Went into DOCTOR for a yearly medical checkup at about 1997 or so, and WALA. I was then informed that she, my doctor/GP, heard something that did not sound right to her. So she set me up to see the CARDIO DOCTOR, and he did an echo and the MITRAL was not closing all of the way, it was a regurge problem, and before it got worse, he snt me up the OHIO for the surgery, and back in 1998/dec, Dr. Cosgrove/surgeon attempted a fix job, and placed a ring on it. it lasted till 2015 when it again got so bad, I now own a SAINT JUDE MITRAL VALVE, and of course will be on WARFARIN forever and a day. I am, 5-22-1953, male, and for the most part, not any other major problems. ALSO retired postal service/MAILHANDLER after 31 yrs/in 2004. and also am USAF! there now ya got it, the entire story. And recently i bought and own a brand new MACHINE to test INR! it is awesome, and for anyone that has the capital, please get one, AND DID I MENTION..........it is an AWESOME MACHINE. [Coaguchek]
 

Protimenow

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If you can afford one (or possibly am in a tax bracket that actually allows you to deduct or amortize the cost), a new meter is a good idea.
If you're on Medicare, supposedly, Medicare will pay for a new meter if your doctor prescribes one. I don't need one, but if I am able to get one of the new CoagChek machines, I might ask.

My point here, though, is that used monitors on eBay are also pretty accurate - Roche and Coagusense design these meters to be error free - the strips come with a chip (CoaguChek) that contains the correct adjustment for the INR reagent, and the Coag-Sense has the adjustment value printed on the strip. Both meters include built in quality control on their strips, practically assuring that test results are accurate.

FWIW - I've occasionally run into significant differences between the values reported by the two meters. Sometimes one meter value is closer to the lab, other times, it's reversed.

I wouldn't hesitate to buy a used meter on eBay - especially from a vendor with a good seller rating, and who will take returns.

There are two sellers on eBay who were (and maybe still are) selling CoaguChek XS meters for as little as $30 or so - the meters are missing the battery cover and a blue strip guide, but can be made to work and, at the price, are a pretty good deal. (I bought one for $30, did the minor modification to make it work, and the results are very close to those from my other XS).

Pricing of these meters shouldn't necessarily be a dealbreaker if you are looking for a meter.
 

John K

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Jan 20, 2020
Messages
27
I was 54 and went into the ER with extreme dizziness and they found a ascending aortic aunerism. Due to damage to the valve discovered when they operated less then a month after discovery the valve was replaced at the same time.

John K
 

Pete81

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5 years ago, just 4 weeks after our first was born, happy times became troubled times. After a week of feeling incredibly tired, I experienced fever of 41 oC for a weekend. Terrible, felt I was dying. Fever dropped but kept feeling really ill for weeks. Had low grade fever, nightsweats to the point the bed was soaking and lost 15Kg in body weight. Knew something was really wrong but GP kept just looking at my somewhat elevated CRP value saying it had to be a simple viral infection. I am never ill like that, hack, never called in sick in my life. After 6 weeks I insisted on referral to the hospital, GP had a last good listen to my heart after which he sent me directly to A&E with a letter. After full day of tests, at 7pm a cardiologist showed up at my bed explaining I was born with bicuspid AV and TTE had shown there was an infection of the valve. Had six weeks of IV penicillin, had TOE on last day and got cleared by infectious disease doctor. The day I thought I was clear of infection a bit of the, what I reason was by then a very brittle AV, broke of and caused an infarction (fortunately) in my right upper thigh. Ten days later I had OHS. After the St Jude regent Mechanical was put in I had two bleeds, first one they took me back in, second time I took a thorax drain by CT-scan guidance. Altogether I spent 11 weeks in and I just realised 28th of October was 5 years ago since surgery 💪🏻. The bug they found was streptococcus gordonii, guess what, the Monday before I felt tired and got my first high fevers in July that year I saw the dental hygienist….endocarditis is pretty much a risk for all of us so felt it was good to mention a few details that should ring alarm bells should anyone ever be unlucky enough.
 

Bill B

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Apr 24, 2009
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Alamo, CA
Mine was discovered serendipitously when I decided to have my nose's deviated septum fixed. I had been totally healthy, ran track in high school, and was a very fast marathoner in my 30s. Jump ahead to age 60, getting my nose fixed. This required a certification I was OK for surgery. I hadn't been to a doctor in 10 years, so I scheduled the required EKG and passed that. As I was putting my shirt back on, the technician said I needed to wait to see the doctor. A doctor I didn't know came in looked at my back and said "You have a suspicious mole. You need to see s dermatologist." Then she listened to my heart and said, "You have a murmur and need an echocardiogram." The mole turned out to be malignant melanoma caught just in time to be excised locally. Had I gone another year, it would have killed me. On echo, the murmur's cause was identified as bicuspid aortic valve with severe aortic stenosis. WHAT!? I never knew and had never had any symptoms and was a fast, effortless runner all my life. The valve deteriorated rapidly with each echo at 3-month intervals and a year later I had it replaced with a mechanical valve and had an aortic arch aneurysm repair. This was in 2009. I remember when I first met the surgeon. He asked me what symptoms I had and I replied none. He asked me again. I gave the same reply. He then said my heart was working overtime to overcome the stenosis and my first symptom could be my last. I knew the echo results were terrible and getting worse rapidly. I went to see the surgeon even though my cardiologist was content to watch and wait for symptoms before surgery. I agreed to surgery immediately and fired my cardiologist. And the doctor who knew my murmur was significant and caught the melanoma in a 5-minute exam became my hero and family doctor.
 

pellicle

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. This required a certification I was OK for surgery. I hadn't been to a doctor in 10 years, so I scheduled the required EKG and passed that. As I was putting my shirt back on, the technician said I needed to wait to see the doctor.
a lucky catch ...

glad you're still with us
 

pellicle

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The bug they found was streptococcus gordonii, guess what, the Monday before I felt tired and got my first high fevers in July that year I saw the dental hygienist
its anecdotal I know, but I still don't get the failure to prescribe antibiotics pre dental cleanings in heart valve patients. All because they worry that some small portion of the population might be contributing to the possibility that some bacteria will become antibiotic resistant.

I'm guessing you take them now before dental cleaning ...

Best Wishes
 

Unicusp

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Jan 30, 2021
Messages
236
The day before my 50th birthday, while at work (in a very stressful management position in a Union environment at a small plant site) I started to feel some strange tingling in my left upper chest and left arm. Not really painful but strange and new to me. I have a high pain threshold so hard to tell sometimes. So, like most men, I drove myself to the ER! Walked in, saw the usual packed room with hours wait ahead of me, and stated that I was having some strange chest pains.

They quickly brought me in, hooked up the machines and started the tests. A young Doctor comes over after the testing and says he has good news and bad news. The good news was they saw no evidence of a heart attack. The bad news was they found an aneurysm. I’m thinking what? I was in top physical condition with no issues ever. The Doctor said they had to admit me for further testing and to gauge how bad it was. So, I was there until the next day and released on my birthday with referrals to a local Cardiologist for determination of next steps.

They found that my ascending aorta was enlarged (over 5cm) and that I had a BAV. I was in disbelief as I had no symptoms, felt great, never on any meds, with regular workout routine. My Cardiologist could not believe that I never smoked as he tried to determine causation and determined it may have been long-term untreated high blood pressure.

So, I thought back and recalled only one physical in my life where the Doctor said he thought he heard a murmur. This was a full day comprehensive Military physical when I entered the Marine Corps Officer Candidate program around age 19. I was running sub 6 - minute miles at the time (3 miles in 17 minutes), so the Doctor said maybe he was wrong. That was that.

So, we monitored the issue for 2 years with echo’s every 6 months, when my Cardiologist said we can’t ignore this any longer when the ascending aorta was around 5.4 cm. I chose the Cleveland Clinic and was scheduled for mini-sternotomy for ascending aorta repair with Dacron graft and he would determine what to do with the valve upon visual inspection. The surgeon confirmed it was in fact a unicuspid valve. Since I was not forceful and left it up to him, he decided it was good, cleaned it up, and said it could last a long time. That was June 2013. In December 2020 after a long workout, had my first syncopal event and discovered the valve had very severe stenosis and calcification. Surgery in Feb 2021. On-X mechanical valve in full sternotomy.

Did some research into family history and discovered that my great grandfather had a massive heart attack at the age of 52 while climbing stairs (my exact age when I had aorta repair). Too bad they did not do autopsies back then. I surmise it was his aorta. And my grandmother on other side also died of a dissecting aorta, but she was much older ~ 82. Good old genetics.
 

Chuck C

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Dec 5, 2020
Messages
1,175
its anecdotal I know, but I still don't get the failure to prescribe antibiotics pre dental cleanings in heart valve patients. All because they worry that some small portion of the population might be contributing to the possibility that some bacteria will become antibiotic resistant.
Having heard so many stories of those with BAV getting endocarditis from a dental cleaning, and having read the arguments for stopping the policy of giving BAV patients anti-biotics prior to dental cleanings, I am coming to this opinion as well. Prior to 2008, it was standard of care to prescribe amoxicillin an hour prior to dental cleanings and procedures. At that point they changed the guidelines and now recommend 2,000mg amoxicillin be taken after one has a prosthetic valve, prior to dental visits, but not if one is BAV, but has not yet had surgery.
I am forming the opinion that they had it right in the previous guidelines. 2,000mg of amoxicillin a couple of times per year is very unlikely to do any harm, and in my view the risk/reward is likely worth it to reduce the chances of endocarditis for BAV patients, even before valve replacement.
 

Deepak khanka

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Jun 24, 2021
Messages
42
5 years ago, just 4 weeks after our first was born, happy times became troubled times. After a week of feeling incredibly tired, I experienced fever of 41 oC for a weekend. Terrible, felt I was dying. Fever dropped but kept feeling really ill for weeks. Had low grade fever, nightsweats to the point the bed was soaking and lost 15Kg in body weight. Knew something was really wrong but GP kept just looking at my somewhat elevated CRP value saying it had to be a simple viral infection. I am never ill like that, hack, never called in sick in my life. After 6 weeks I insisted on referral to the hospital, GP had a last good listen to my heart after which he sent me directly to A&E with a letter. After full day of tests, at 7pm a cardiologist showed up at my bed explaining I was born with bicuspid AV and TTE had shown there was an infection of the valve. Had six weeks of IV penicillin, had TOE on last day and got cleared by infectious disease doctor. The day I thought I was clear of infection a bit of the, what I reason was by then a very brittle AV, broke of and caused an infarction (fortunately) in my right upper thigh. Ten days later I had OHS. After the St Jude regent Mechanical was put in I had two bleeds, first one they took me back in, second time I took a thorax drain by CT-scan guidance. Altogether I spent 11 weeks in and I just realised 28th of October was 5 years ago since surgery 💪🏻. The bug they found was streptococcus gordonii, guess what, the Monday before I felt tired and got my first high fevers in July that year I saw the dental hygienist….endocarditis is pretty much a risk for all of us so felt it was good to mention a few details that should ring alarm bells should anyone ever be unlucky enough.
Pete, thanks for sharing your experience. I am from UK too and was wondering which hospital you got operated and who was your surgeon. I am due to have my surgery at Harefield my surgeon is Mr Baharami
 

Pete81

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its anecdotal I know, but I still don't get the failure to prescribe antibiotics pre dental cleanings in heart valve patients. All because they worry that some small portion of the population might be contributing to the possibility that some bacteria will become antibiotic resistant.

I'm guessing you take them now before dental cleaning ...

Best Wishes
its anecdotal I know, but I still don't get the failure to prescribe antibiotics pre dental cleanings in heart valve patients. All because they worry that some small portion of the population might be contributing to the possibility that some bacteria will become antibiotic resistant.

I'm guessing you take them now before dental cleaning ...

Best Wishes
I was in the UK at the time and indeed most healthcare professionals follow ‘NICE’ guidelines which states antibiotic prophylaxis is not recommended. Fortunately I had a fantastic Australian consultant cardiologist in Addenbrooke’s who gave me a prescription for whenever as she called it ‘people would do things that make holes on the inside’. Now back in the Netherlands, my dentist even insists on me taking AB prophylaxis. I don’t see either why risks are being taken with heart valve patients when I think it is quite evident this fear for ‘superbugs’ should be related to the huge amounts of antibiotic prescriptions given rather easy to patients which are then not taken through the entirety of the prescribed period.
 

Pete81

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Pete, thanks for sharing your experience. I am from UK too and was wondering which hospital you got operated and who was your surgeon. I am due to have my surgery at Harefield my surgeon is Mr Baharami
Hi Deepak, I had my surgery at Papworth hospital which has now moved to Cambridge. Mr Large was my surgeon. Given my complex situation of active endocarditis at the time I was very happy to have such an experienced surgeon.
 

pellicle

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Hi

I was in the UK at the time and indeed most healthcare professionals follow ‘NICE’ guidelines which states antibiotic prophylaxis is not recommended.
agreed ... and its been a topic here from time to time.

Now back in the Netherlands, my dentist even insists on me taking AB prophylaxis.
I'm unfamiliar with this ... does it mean before and after?

I don’t see either why risks are being taken with heart valve patients when I think it is quite evident this fear for ‘superbugs’ should be related to the huge amounts of antibiotic prescriptions given rather easy to patients which are then not taken through the entirety of the prescribed period.
as a guy who did a microbiology / biochemistry degree I'll say its down to committees who aren't always scientists but read notes written by them (and think they are informed). I see this is a large issue in many aspects of life: simplification leading to missing points.
 

Chuck C

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Fortunately I had a fantastic Australian consultant cardiologist in Addenbrooke’s who gave me a prescription for whenever as she called it ‘people would do things that make holes on the inside’.
I like it! As a matter of fact, I just picked up my prescription for amoxicillin at the pharmacy as I have a dental cleaning coming up. But rather than have the dentist call in 2,000mg, I asked him to call it in for 10,000mg, which is enough for 5 doses, so that I always have some on hand. In the event I step on a rusty nail, or my machete juggling act takes a bad turn, I plan to immediately take 2,000mg, rather than wait for a doctor appointment to get it prescribed. Even if the risk of endocarditis is small, I'd rather err on the side of taking antibiotics in such event.
 

ATHENS1964

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Oct 19, 2019
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My story begins if I remember well somewhere around 1995, I happened to go to my wife's job who was then working in a medical center, then a doctor had bought a new ultrasound and asked me to help him with the cables and the connection to the monitor and cardiograph because I was then working as a computer technician. When we finished he asked me to try it on me and then he told me I have BAV, I had surgery in August 2020
 

Lynn

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My dentist, prior to my valve replacement also insisted I take pretreatment antibiotics. They diligently asked every time I went in and the one time I had forgotten to take my dose they refused to do the check up. Prior to taking me on as a patient we discussed the updated guidelines suggestions antibiotics were not recommended for BAV, but that he did not believe they made sense. He would not take me as a patient unless I would agree to a take a premed as they call it. He felt the risk was to high, and was very adamant. I was good with that. Having my first post surgery check up in a couple of weeks and I admit to being a bit nervous, despite the premed. Anyone every ended up with endocarditis even with a premed?
 

sharky7

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miami, fla.
FWIW - I've occasionally run into significant differences between the values reported by the two meters. Sometimes one meter value is closer to the lab, other times, it's reversed.
I would love to know and ask you, what the meaning of that is, "significant differences". I also and at least 2X it has happened. I check the same day that I give blood to the VA, and it is about 0.5, or so lower then what my self testing comes back with. is this what you meant? and they have me I THINK too tight on what my INR needs to be, 2.5-3.5......I think 2-4 INR would do the trick, and keep me safe, and would be an easier target!!!

ANYONE weighting in on this, and finding labs are coming up not exactly what the HOME-TESTing numbers are? and what numbers are coming up, PLEASE share here!!!

AND another and very good question people here also, i think want to know, is there anyone here that give us more of an insight to exactly how those "lab tests" are done, in comparison to how they are suppose to be done. example-my home test]i prick my finger and my machine informs me I have a certain amount of time to place blood onto strip! The VA LAB take my blood then the lab gets, i have no idea even how long it takes the lab to even get it, and once they do, how long it takes them to get to it and test it??? [at my VA those places are not even on the same floor, they draw on 1st floor, and the LABS are on 3rd floor!]
HHO
 
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