New to the site

[fireftr]

Thanks so much for providing such an informative and supportive site! Here is a little about my situation:

Went to my annual physical for work which is usually just quick 10 minute formality for my job as a Firefighter/Paramedic. The doctor heard a murmur and what he thought were carotid bruits. He encouraged me to follow up with a cardiologist. I was sent for an echo and appointment with the cardiologist. I assumed it was all going to be a waste of time and money as I had always been healthy; and besides, wouldn't they have noticed something on a past physical if there was really something going on? My echo revealed a bicuspid aortic valve with moderate to severe aortic insufficiency. Luckily there is no stenosis yet and other values such as LV internal diameter are within normal limits including an EF of 65-75%. After comparing some of the numbers to normal values I have found on the internet, it looks to me like I am in the upper ranges of normal though. My cardiologist didn't spend a lot of time with me and didn't seem too concerned though didn't deny the fact that AVR was inevitable. I think he could tell I was very nervous so he didn't want to make a big deal out of the situation as it is a very common defect and sudden death probably won't happen tomorow.There was never an EKG run so out of curiosity I ran one on myself at work and I'm showing many signs of LV hypertrophy which concerned me a little. I'm sure the echo is much more sensitive so it is nothing to worry about but I will be bringing my EKG strip in with me to my next appointment. I'm sure he must have some concern though as he set me up for a follow up at two months. He never really gave me an indication of how long I could go on my current valve. I am having trouble figuring out if I am mildly symptomatic. I've experienced a couple of episodes of "lightheadedness" and shortness of breath while lifting heavy people and lifting weights in the gym. I can't figure out if it's all in my head. I think the doctor thinks it is all in my head as my EF is still more than normal. Part of me wishes I could just go in and get it replaced so I could move on with my life. The waiting game really messes with your head. I know deciding when surgery is appropriate isn't black and white but I'm the type of person that wants to make a plan and it's hard to do when you don't know if it could happen within a year or 20 years.

I am a little freaked out. I'm 30 y/o with two young daughters and a wife. I love my job and fear I won't be able to do it after surgery (especially if I am required to be on Coumadin for life). I know that there are several options for surgery that wouldn't require anticoagulation though I also fear being back under the knife in 10 years. I just really appreciate the site. You are all an incredibly strong and supportive group of people! I've learned a lot by just browsing around the site the last couple of weeks. Thanks for allowing me to be a part of it.

Eric

 

[Ross]

Hi Eric and welcome. Sounds like you'll be in the waiting room for a while yet. We all know what you mean and understand completely about waiting and wanting to plan things. It's just not possible with this deal. You may be fine for quite a while yet, then again, things could down hill in a hurry. Hopefully, they want to see you every 6 months at this point. Main thing is, get it done before your heart enlarges too much. Mine did and has never shrunk back down and it's no fun.

Others will be along to share. Meanwhile, read as much as you can, starting with the stickies in the valve selection forum, unless you already know what you want etc. Your fears are everyones. You simply have to decide for yourself which has the lesser evils for your life. Coumadin isn't the monster it's purported to be, but I don't think anyones convinced the fire fighters association of that as of yet.

Hang in there. Were here.

P.S. Eric you might want to talk to fyrtytr Dave. I'm sure things are different between states as far as requirements go, but perhaps he can be of some help to you in the job area. If nothing else, your brother fire fighters and I know he's lonely here. We have another that shows up from time to time, Harpoon, but havne't seem him lately.

 

[fyrfytr]

Welcome!

Welcome!

Hey Eric
I want to Welcome you to this Great Site.
Glad you found us. I didn't fine this site until after my surgery.
I am just to the east of Ft. Collins in Sterling and was a Firefighter for 24 yrs.
I am sending you a PM.
Again WELCOME!

 

[Granbonny]

Hi Eric

Hi Eric

Just want to welcome you to our great site...My son is a policeman..under a lot of stress. so his doctor does have him on a mild b/p pill...He is older than you..age 37......How are your vital signs...B/P normal, ect.....If so..I would not worry..Wait until your next Cardio visit and let us know. Bonnie

 

[Karlynn]

Welcome Eric! It can be very overwhelming. Rest assured that there is a lot of great medical procedures ready to fix you when the time comes.

It never hurts to get a 2nd opinion, particularly if you are unsure and don't know what to think. If both doctors are saying the same thing, you know you're probably on the right road.

I had my mitral valve replaced when my children were in kindergarten and 2nd grade. 16 years later I can tell you that life has been good and unencumbered by my valve issues.

 

[hensylee]

Welcome, Eric. I'm not sure who is in 'charge' of the waiting room these but we do have quite a few folks sittin in there!~

You found a good site. Being a medic, you already know a whole lot about your situation. In here there is much in the way of personal experiences to share, along with support and general information. Glad to have you with us.

 

[Superbob]

Welcome, Eric. I am sure you will find a lot of information, advice, and encouragement from the wonderful people on here.

Just thought I would mention that a doctor first detected my murmur when I was in my 20s and said I would have to have surgery eventually. That time for OHS came when I was 63. During those intervening 40 years, I led a very active life.

Not saying your time in the waiting room will be that long. But it does sound like you have time to do your homework on heart issues, and meanwhile continue with your regular pursuits. The good news is that you have had the condition diagnosed. Now it can be monitored and taken care of when it needs to be, with a very very high success rate.

Cheers,

 

[WayneGM]

Welcome to the VR community, Eric. You'll find lots of information, advice, support, and inspiration here. Glad you found us.

You're story sounds similar to mine. I was feeling perfectly fine and went for my annual check-up (my wife started making me go when I hit 40). Every year the results are fine, except this time the doc heard a murmur that wasn't there before so I was referred to a Cardiologist. It turned out to be a moderate mitral valve leak and was told I'd likely need surgery sometime in the future but no sense of timing. So I was scheduled to go back every six months to monitor the rate of progress. In my case, the wait wasn't too long, to even the Cards surprise, as I went from moderate to severe rather quickly. 18 months after discovering the murmur, I had my OHS.

You are right about the waiting messing your head. I was actually kind of relieved when I was advised to schedule the surgery.

Best wishes and good luck.

 

[fireftr]

Thanks to all

Thanks to all

Thanks to everyone for the kind words! There's a good chance I'll be lingering around for a while in waiting. I do feel lucky that I should have plenty of time to do my research and get things in line before things progress. I know there are many people who haven't had that luxury. Eric

 

[Freddie]

Welcome Eric,
You are such lucky man to find this site before surgery. Like Wayne, I too was thought to be in perfect health. To make a long story short. I found out that I needed a MVR. All was said and done in 10 days. I had no time to think or ask the right questions. I found this site long after my surgery.
Good luck to you in finding all the information you need to climb this mountain.

 

[Marguerite53]

Hello Eric.

We're so glad you've joined our group! If it's any consolation to you, I knew I had a bicuspid valve for 25 years, then noticed the symptoms you mention (tho I wasn't doing heavy lifting) went to the cardiologist and was told things were heading toward a valve replacement. I waited 3 years. It was tough. Really tough. BUT!! Now I'm close to 18 months post-op and quite frankly, don't ever even think about how stressful the wait was unless it comes up like this. I am renewed!! I am whole. I am here!! So no matter how much it messes with your head, please know that quite likely, you will get through this whole thing just fine, and then.....your life will go on so beautifully that this stress you are feeling now will hardly be a memory.

Remember that we are here for all feelings, questions, complaints.......come back anytime!

Marguerite

 

[dlangton]

The luxury of waiting...

The luxury of waiting...

This is conjecture since I am not a medico, but considering your situation (especially the wonderful EF figure), you probably have many years to go before you must go on the table for this condition, which to most people on this forum probably seems like more of a luxury than a problem. From my perspective, if you don't absolutely need to have the surgery done soon then it's probably worth waiting for the new technology that we can only dream about now, like the ability to grow a specific valve for you from your own stem cells --- the sort of thing that is now being developed in the research labs. It is very scary to be diagnosed with BAV and aortic insufficiency so it may sound odd to be told that you're in an enviable position, but the later you can jump on the technological merry-go-round, the better off you're likely to be. (Just my $.02.)

 

[Cooker]

Eric,
Welcome to the zoo!! Great place, great people. Wishing you the best.

 

[surfsparky]

Welcome Eric!

Your story echoes ours...Chris found out about his BAV accidentally by our doctor detecting a murmur at an annual check up, and within a couple of years he had surgery. He was quite asymptomatic before OHS although looking back he was quite tired but we thought that was due to our 3 year old and very wakeful 3 month old!
After researching, Chris opted for the Ross Procedure. I remember it being such a scary, emotional and teary time but we were also so thankful for our 2 little ones...they were a beautiful distraction. There have been so many golden moments as a result of OHS...the biggest being we certainly cherish life so much more.
We're glad that you found this site...it's a valuable and supportive place. Feel free to vent, chat & ask all of your questions...nothing's too trivial around here.

Take care,
Yolanda

 

[epstns]

Hi, Eric, and welcome to The Waiting Room -- the virtual room in which many of us await our own turns at valve surgery. I'm another of those who was always thought to be in great health until a new doctor, at an exam for something thought to not be heart related, asked the bombshell question "How long have you had that murmur?" Since it was news to me, he advised me to have it evaluated by a cardio ASAP. My diagnosis was aortic stenosis, but other than the murmur I was asymptomatic.

Fast forward almost 5 years. I am now approaching 60 and still jog 4 miles daily and lift light weights. I am still working 50-60 hours a week, although I don't have the energy reserves I once had. I relate all this to help you understand that you may (or may not) be waiting for a number of years prior to surgery. This site, and the wonderful people here, will help you deal with the many emotional and informational issues you will encounter. The folks here are among the most knowledgeable and willing to share their real life experiences, so please feel free to ask lots of questions and browse the site to learn all you care to absorb.

We're glad to have you, and glad that you found us before your surgery. This site, and the "family" here, have helped me to maintain a charade of sanity through all this (yeah, I'm kidding about the charade. . . or, am I? <g>)

 

[tobagotwo]

Glad to have you aboard, Eric. It's a bit tough to get your head around this kind of news. Of course, some of us get no time to think about it at all. It's hard to know which is more difficult.

A couple of thoughts...

Your cardio isn't evading you. You aren't about to keel over any time soon. You should consider asking him to check your aorta size, though, to ensure that you don't have any aortic enlargement.

While your LV is within normal limits, that's just an arbitrary number used for convenience's sake. Your ventricle may already have grown significantly within that "normal" limit. Get and keep your test findings for later comparison of LV sizes.

In terms of normal, the 65%-75% range for EF is normal for highly toned athletes and bicycle racers. For normal humans, if there are other factors present (aortic regurgitation - a.k.a. insufficiency - would certainly qualify), it's generally indicative of the beginnings of Left Ventricluar Hypertrophy. Don't get too concerned: LVH is a long process.

For heart valves, Stenosis is when there are mineral deposits (or other obstructions, such as scar tissue) around the valve that prevent it from opening fully or just plain obstruct the bloodflow. The heart has to pump harder to get enough blood through the narrowed opening. Regurgitation (which you have) is when the valve doesn't close fully. Your heart uses its energy to pump the blood out into the aorta, but some of it just slides back in, wasting the effort. Mineral deposits (apatite) can also be involved, if they are on the valve leaflet edges, and are keeping the leaflets from closing completely.

Which is worse? They both require surgery. Aortic stenosis is easier to measure, which (along with SOB and other symptoms) can help in getting an earlier surgery date. In rare cases, severe stenosis can cause sudden death from overexertion. On the other hand, aortic regurgitation probably makes you more tired on exertion in general, and the surgery date is more guided by guessing and symptoms. In reality, by the time they have surgery, most people actively have both conditions.

Symptoms are important, and shouldn't be witheld from the cardiologist, as they can affect the timing of the surgery. However, you will find that it becomes increasingly difficult to monitor your own symptoms, as you start to have doubts as to which ones are real and which ones you might be manufacturing in your head from fear. (Yes, fear. It's allowed. This is the Real Thing: it's a big deal.)

The negative odds for the surgery only run about 1%. And you are on the good side of that in terms of age and general condition. Still, we all know how much that percent can eat at you in idle moments. You can talk to people here. We really do understand about this, and how it can make you feel.

Best wishes,

 

[jimbo]

Hello Eric

Hello Eric

Hello Eric. I too was diagnosed with a bicuspid aortic valve about two years ago. I had no symptoms and the day after I was diagnosed, I hiked to the top of Mt. Whitney. I'm a 20 year law enforcement veteran ( from Southern California) and always have beeen extremely active. I was fine up until the begining of ths year when I had A-fib problems and I could barely walk up a flight of stairs. I bit the bullet and told the docs make me better than new. I had the surgery at the end of April (5 months ago) and I'm starting to again feel like a million bucks. I've been back to work a little over a month and I feel like I'm better every week. Like you, I was scared to death when they told me I'd have to have surgery! I'm not yet a 100 percent, but I'm a whole lot better than before the surgery. E-mail directly if you want to talk about recovery, returning to work, cumadin, etc...

 

[Bina]

Hey Eric, nice to meet you, and welcome to the group/family.
My doc found my heart murmur when I was 20, I was supposed to have surgery at age 44, but stalled until I was 46....(not a good idea).
You may want to talk to your doc about taking antibiotics for dental procedures.
There are differing opinions on this.

 

[imhayley]

Welcome Eric!

Welcome Eric!

I am so glad you found us here at VR.com. I just wanted to welcome you and tell you that I hope things go well for you. I take coumadin and consider myself one of those "running with scisors" type of girl. No worries!!! Promise! Lots of folks take coumadin and well I just remember it's my spice of life Good luck and best wishes to you.

 

[cpt278]

Sorry about your news FF.
Think of the consequenses if you did not find out.
I too am a FF (NYC).When I found out I could not be in the field anymore I was more upset of that then knowing I had to have AVR in Nov 05.
I am on coumadin and a self tester. Makes it a lot easier.
Only major problem with coumadin is not getting back in the field after 27 yrs.

Sometimes I wish I had tissue valve so I could get back to work.With all the new advancements maybe by the time I wore it out there would be something new.
My lifestyle withe mechanical is almost as before the surgey and I feel great.I am just a little more carefull but not much. My wife has been great thru the whole process.

The choice is yours & be happy with what you chose.
Take a look at your family and think of the grerat years you have ahead.

Good look, I will be thinking of you