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R

ruth

I've been lurking here for a month or so learning a LOT from all your personal insights and for that I thank you all. :)

I had rheumatic fever as a child and have 3 damaged valves, the worst of which is the mitral valve at 3+. My aortic and tricuspid are both 2+.

I've known for years that I have mitral valve regurgitation but I was pretty floored when my most recent echo showed that I'd need surgery soon. Geez, I'm only 47 :cool: . Unfortunately, my left atrium is quite enlarged and it's about time to deal with this surgically.

A few months ago what was an occasional irregular heartbeat evolved into daily PVCs that are most annoying and this drove me back to the cardiologist after a dozen plus years of ignorant bliss. Now I'm on atenol 50mg (25 mg twice per day) and I sleep like a baby on the stuff, unlike others here I know, go figure. Maybe its because I don't lay awake counting skipped beats :eek:

Right now my best guess is OHS in Feb/Mar and I remain "in the waiting room" until then.

Again, thank you all for creating this wealth of information and personal experience online.

All my best,
Ruth
 
Welcome, Ruth. As you wait for surgery, I hope you are able to get all your questions, fears, etc. answered here. Be sure to check out the valve selection thread and pre-surgery thread. Keep us informed on your decisions- we wish you the best!
 
Welcome Ruth! I'm glad the Atenolol is helping with the arrhythmia (common to mitral valve problems). I had my mitral valve replaced at 32, 15 years ago. There are many of us that have you beat in the surgery age department - so don't feel too bad that it hits you at 47.

You find lots of support here.
 
Hi Ruth,

Welcome to VR.com and to the waiting room. I understand how frightening it is to find out you will need OHS (and I am only 38) but stick around here long enough and you will see so many people go through it successfully. There are also many people on here who have had their surgery years ago and are still going well. Ask any questions you may have - someone is bound to be able to answer them!!!
 
You have come to a great place. Just ask any questions you have and someone will come along and answer it for you. This place will make you feel relaxed about having your surgery.Welcome
 
Hi Ruth and welcome to this board. We have an ever growing family here and am glad to have you as part of it.

I too have rheumatic heart disease and to some extent all my valves were affected. My left atrium was very enlarged (between 5.5 and 6.0) at the time of mitral valve replacement and it has come back down to 4.3 on the last echo. As a result of the enlargement I began having a lot of arrhythmias and ended up in atrial fib and on coumadin before my valve replacement.

I remember that feeling I had when I found this site and all of a sudden I no longer felt alone. We have quite a few others here that received invitations from rheumatic fever. I am 58 and had my St. Jude mitral valve implanted 3 years ago. Ask any questions that you have and someone will try to answer or point you in the direction to search.

Take advantage of the Reference forum and especially the "Must Have" area. There is a real wealth of information kept there that is sometimes overlooked. One of my favorite is http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct

Again welcome!
 
Welcome, Ruth, to the waiting room. Did they tell you that new members to the waiting room have to keep the coffee pot fresh?

We are glad that you have found this site. Read on and ask anything you want to know about, no matter what it is.
 
Welcome to the CR.com community, Ruth. There's lot of experience, insights, and support here, that's for sure. I had severe mitral valve regurg and had it repaired last Feb 28 at age 51 as my atrium was also enlarging. All the best!
 
Welcome Ruth! We're glad you found us. I, too, had rheumatic fever, although it was undiagnosed at the time. I found out later what caused the damage to my valves. I had my mitral valve replaced back in 1981 with a St. Jude mechanical. That valve has lasted for 25 years, three months, 24 days, and counting!:D Anyway, this is a wonderful place with wonderful people, and we are happy to have you as part of the VR.com family! LINDA
 
My doctors say that I must have had rhuematic fever when I was young and that it disguised itself as a bad sore throat. Anyway, I was diagnosed with aortic stenosis at 43 and mitral stenosis about 5 years after that and now I'm 53 and just had a double valve replacement with mechanical valves on Nov. 1st. I think that the anticipation of the surgery was worse than the recovery! I'm grateful that I was out during the surgery and when I came to the ventillator tube was already removed and I wasn't feeling too bad! This web site has given me so mch support and help! I'm glad you found it and I hope we can help you with any questionyou may have. Welcome Ruth!

Marcie
 
Hi Ruth. I am also in the "waiting room". I am 44 yrs old and am looking at surgery in Feb. I have a bicuspid aortic valve with regugitatin and mitral valve prolasp with regugitation. You have found the right place to be right now. The people here are GREAT!! Good luck and ask away!
 
Hi Ruth and welcome to the forum. My regurg was watched by docs for 40 years but I was still aghast the day a cardio said I should have surgery soon. It's never easy to hear that news. But the prospects for a better life post-surgery are very high, as you will read here. Call on the "family" here for their personal experiences and slants on things. Since you are in DC metro area, you have access to some of the best heart surgeons and facilities anywhere. I was tremendously pleased with Inova Fairfax but I know there are other excellent ones in the VA/DC/MD metro region.

All best wishes,
 
Welcome Aboard Ruth !

The fact that you have an enlarged chamber gives me some concern. Have you interviewed any SURGEONS yet?
If not, I highly recommend that you do so ASAP.

Surgeons like to operate BEFORE there is an PERMANENT DAMAGE to the Heart Muscles and Walls. Enlargement is a definite indicator that damage is being done. Hopefully you have not crossed the line into Permanent Damage yet.

I'm in the "Sooner is Better" camp and recommend letting the SURGEON make the call on WHEN to have surgery. Note that many cardiologists (old school thinking) often advise waiting until symptoms (and DAMAGE) become noticable before recommending surgery.

'AL Capshaw'
 
Thank you all !

Thank you all !

Thanks for the warm welcome!

Yes, I'm going to see the surgeon soon, this is all happening pretty fast, I just got the echo results back. I'm also going for an 'exercise echo' in a couple of weeks probably right around the same time that I talk with the surgeon. From this I believe the cardiologist will get a better idea of how soon I need surgery?

I've known about the murmor since I was 12 and my rheumatic fever did masquerade as a horrible sore throat that lasted a long time. I had follow up echos at ages 18 and 29 (pre babies) and was given the all clear for the whole preggie/childbirth thing. Since then I've been happily raising my two (now teen) boys until I starting feeling uncomfortable from an irregular heartbeat several weeks ago. Since then I've had the echo and worn a holter monitor, thankfully no afib [yet] just some PVCs and some extra beats (forget the name for it) and I'm quickly coming to terms with the fact that I really do have to deal with this [now] before permanent damage. Whether or not the enlarged atrium is permanent or not I don't really know, I suspect at least some of its size increase likely is, I was of the impression the goal was to nip this before it is so big that afib starts or the ventricle changes. Forgive me if I've got this wrong, I'm still trying to get all this straight in my mind.

Now maybe the Docs were just bluffing but my whole life so far the card's have always just treated the murmur like it was totally benign, I mean I knew I would never win the olympics or join the NBA but I really wasn't expecting OHS in my 40's either. Call me naiive but I wasn't *ever* expecting OHS, just 4 tablets of pennicillian before dentist visits for the rest of my life. Am I alone in that?

I do have one question for the group. I often feel the need for a really deep breath, I don't think of it as being short of breath per se but a cousin of it. Is that common with valve problems? It may just be psychological too, seems to have gotten worse since learning that I'll need valve surgery.... :p

I'm really delighted by your warm welcome and I really appreciate all of the insight here, thank you.

Ruth
 
ruth said:
Now maybe the Docs were just bluffing but my whole life so far the card's have always just treated the murmur like it was totally benign, I mean I knew I would never win the olympics or join the NBA but I really wasn't expecting OHS in my 40's either. Call me naiive but I wasn't *ever* expecting OHS, just 4 tablets of pennicillian before dentist visits for the rest of my life. Am I alone in that?
Click to expand...

Anyone with valve problems should be premedicating with antibiotics before any dental work and invasive procedures.

My MVP was diagnosed when I was 22. I was told I would probably make it to a rip old age without any issues. 5 years later my valve tanked during my second pregnancy and 4 years after that it was being replaced. If I were a betting person, my guess is the majority of us were told it was benign and wouldn't cause problems. Most doctors just aren't geared towards anyone young having heart problems. With the exception of ACHD doctors.

The breath issue could be valve related.

One thing to keep in mind is that cardiologist tend to want to see signs that the heart is having damage done to it before they refer to a surgeon. Most surgeons like to get it fixed before damage is done.

Best wishes.
 
ruth said:
Now maybe the Docs were just bluffing but my whole life so far the card's have always just treated the murmur like it was totally benign, I mean I knew I would never win the olympics or join the NBA but I really wasn't expecting OHS in my 40's either. Call me naiive but I wasn't *ever* expecting OHS, just 4 tablets of pennicillian before dentist visits for the rest of my life. Am I alone in that?
Click to expand...

No, you are certainly not alone in this. All my life (since diagnosis of MVP at 13) I was told I had a "benign" condition. Doctors brushed it off as a nothing condition and made the comment - "Everyone has that". I was even told by a GP that I was "lucky" my cardiologist agreed to see me every year for a check-up. It only made the news more shocking when I was suddenly told - "Oh hang on - you'll need OHS and quite soon" in Feb 06. Makes you wonder how many people don't go for check ups because they have been told it is a "nothing" condition.

Good luck with the echo test and visit to the surgeon :)
 
hensylee said:
Did they tell you that new members to the waiting room have to keep the coffee pot fresh?
Click to expand...

...and bring in chocolate chip cookies on Thursdays. Don't forget the cookies. Hey, today is Thursday.

I had Rheumatic fever twice at ages 5 and 10. The damage was evident shortly after the second bout, so I lived with the knowledge that it would give me trouble most of my life.
 
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