The Writing's On the Wall

[JetService]

Hello all. I'm a 37 male in good health. I'm 6'3", 215. I drink occasionally, rarely exercise, but am active with the kids (3 of them) like coaching soccer, playing outside, etc. I'm an avid bass fisherman and bowler. Also, I don't smoke (unless I'm on fire) and don't do any rec. drugs. Anyway, about a month ago, but family doctor picked up a murmur. He was already treating me for hypertension which ran around 155/95. I told him I recall my pediatrian telling my mom I had a murmur when I was very young but nothing came of it. But he was concerned and ordered an echo for the next week. I called his office about 5 days later and was told I had a consultation with a cardiologist. The cardiologist told me right then he suspects AV Insufficiency. He went right into the details of what it is, how its treated, etc. He asked me if I had symptoms which I replied I only get palps which seem to be associtated with my reactive hypoglycemia (which was diagnosed the prior year). He asked if that happened with exertion and to his suprise, I told him 'no, only when I'm resting; especially lying down'. He ordered a TEE. Then, at the follow-up, he said the leak was severe and ordered a cath (which is tomorrow). He told me that during the follow-up for that, I would meet my surgeon(!!!). I asked him how long it would be until I needed surgery and all he said was 'the sooner, the better'. OK, did that mean? within a few years? Months? Weeks? Anyway, he did fill me in on the details of the surgery telling me it relatively common and sage and has only about a 2% mortality rate, but that includes the elderly. He said at my age, its even less of a risk (I'm thinking to myself, 'well good, butcause 1 out of 50 didn't sound good to me!). He said my heart has no damage yet and this surgery would cure my AVI. He went right into the mechanical valve details, saying I would be on Coumadin the rest of my life. He said that would last me a lifetime barring problems or complications which are very rare. He said it would require a bit of a lifestyle change, but more associated with the drug than the valve. Anyway, I'm really freaked out and scared, but after reading your posts for a few days and doing some research, I feel a little better. Also, the cardiologist is being VERY good about giving me a lot of details and making himself accessable. Of course I have a lot of questions, but I guess I just wanted to get aquainted. I notice a lot of you pick your surgeons. I live in Fort Wayne, IN and we have some pretty good facilities with one particularly good for the heart. I don't know one thing about any surgeons in the area, so I guess I'll just trust the one I get. Also, I'm being told by everyone I tell the news that I should seek a second opinion. Did you folks do that? Does the second doc redo all the tests or do they take the info already done and evaluate it? Who should do a 2nd? Should my family doc refer someone? Thanks for putting up with the lengthy post. I'm sure I'll have a lot more questions!!!! Also, its nice to meet you.

D

 

[Christina L]

Hi D,

Everything is happening really fast for you. I have had a few years being tested every four months until now; my cardiologist says I need the surgery by the end of the year. My problem is the mitral valve.

This is a great site and you will get MUCH help from all these wonderful people. I know I have.

As for second opinions - well, this is my opinion - a person can never have too many doctors' opinions - a second and even a third would be good. This is your heart/your life you are talking about. I'm sure your cardiologist is just great and knows his stuff, but if it were me, I would be getting some more input into your situation.

I know I did that when the ball started rolling for me about 1-1/2 years ago. I talked to about three cardiologists and three surgeons.

You sound like you have a great attitude (even though I know you are scared) and that will carry you through this.

God bless -
Chris

 

[Ross]

Hello there and welcome aboard.

If your indeed showing Severe Regurgitation, without knowing all of your test results I'd say your looking at surgery anywhere from right now up to 1 year. If it's severe, you don't want to wait for heart damage to start.

As for a second opinion, sure you can get one. They'll look over the tests that you've already had done if you request them to and offer an opinion, but I'm betting your going to hear exactly the samething. None the less, it doesn't hurt to check. I would take my second opinions from 2 surgeons. Cardiologists tend to want to wait for damage to start where surgeons would rather nail it before then.

All of this is overwhelming at first. Just remember that those persons taking care of you are highly skilled at what they do. You will be fine. Let us know what the tests reveal when you know.

Again welcome aboard.

 

[Susan BAV]

Hi "D" -

Ditto to what they said in the above posts.

Also, have you read the "One Valve For Life" thread, started by chilihead? It's in "Heart Talk" and had some very interesting information.

I've seen three surgeons in the past month or so and I've just arranged for the films and CDs and tapes of the tests to be sent on (or I've carried some by hand to each appointment) for the other surgeons to read because they all seem to want to read the things on their own and not go by the report and measurements that someone else came up with. All three of these extraordinary experts have all been fairly close in their recommendations, and my husband and I liked them all.

Hoping things go very well for you, ~Susan

P.S. Isn't this a wonderful and informative site?!?!

 

[hensylee]

Mornin D - well, you surely came to the right place because the second name for VR.com is the Freaked and Scared site. All the members try to peel you off the wall so you can get down to the business at hand in a bit calmer frame of mind. The information all over this site will get you to that point. Read and study - and speak to us, asking every question that comes to mind and you will get answers from every corner. Second opinions usually make us a bit more confident that the first one is legitimate, whether we like the outcome or not. I bet when this is all said and done you will be fine, but you do have to walk the walk. And we are always sorry about that, but you are amongst good company. Welcome to VR, take a chair and read on. The others are comin. God bless

 

[Fitzy]

Just to say that I'm about the same age as you (35) and am scheduled to go for my AVR next Wed- 01/10/03. Was really nervous at first but with the help of this forum and speaking with my doctor I made what I feel was the correct choice for me. I have decided for a Mechanical Replacement valve, because of its lifespan. I am just looking forward to getting on with the show now. When you are feeling a little low just have a look at your wife and kids and think of the long life you have ahead of you with them once you have this behind you.( it works for me !)
Hope things go well for you.
Fitzy

 

[rcatalano]

Welcome,

I had my first AVR at age 31. From the time I was told I needed surgery to the actual surgery, about 4 months elapsed. Its a bad news/good news scenario. The bad news is obvious. Also, once surgery is scheduled, its a tough wait. The good news, its elective instead of emergency surgery. You're heart is not damaged yet, so your prospects are bright! I had absolutely no impact on lifestyle, which included running, biking, and a couple of triathlons. I was never able to run as fast as I could prior to surgery, however.

Getting a second/third opinion is probably in your best interest, if only for your peace of mind. Unfortunately, there is no other 'cure' for severe AI. In addition to asking about your condition and need for surgery, ask about advice on heart valves. Its always a tough call here, a lot of conflicting information. Better to get as much information as you can before the surgery. You may find each cardiologist or surgeon has a different opinion. For my first AVR, they left the choice totally up to me. For my second, the surgeon pretty much insisted on a mechanical. I agreed, otherwise I would have looked for a different surgeon.

Take some time to sort this out, understand whats going on, and prepare yourself. Once the surgery is scheduled, check back here for advice on how to prepare yourself and family.

 

[ccrawford]

Hi D - Welcme from another Hoosier. I had my aortic valve replaced about five months ago and I'm doing really great. Of course you're scared, we all were. Given your young age, you should do really well, and should experience fast recovery. You want a surgeon who has done a bunch of these. One place to get information about doctors and hospitals is http://www.healthgrades.com Your cardiologist can discuss how he feels about surgeons in your area as well. I encourage you to learn as much from this site as possible. The more you learn, the easier your path through all of this will be. Chris - Coal City, IN

 

[MelissaM]

Hi D - welcome to the site! It is quite a shock to go from "fine" to needing heart surgery in a week, huh? Be kind to yourself and give yourself sometime to be shocked and totally freaked out - it is totally natural and will most likely lessen as you learn more and have more time to digest your situation.

You have to make the call on how much you want a second opinion. I think it really depends on how active you want to be in your healthcare. The good thing about second opinions is that you get more information. The bad things is. . .you get more information. What I mean is that with one opinion you ask a few questions and then the procedure usually proceeds as the doctor plans. With two opinions, you can start to have choices, analyzing and weighing those choices can be difficult. Again - it depends on how active you want to be w/r/t your healthcare. As this site might indicate, there are a lot of angles to this heart valve stuff.

Fer instance: Your cardiologist is pushing the mechanical valve and indicating that you will have some adjustment with the Coumadin, but that is most likely the best choice for you. If you go and get a second opinion, you might run into a cardiologist/surgeon that thinks because you are so young and advances are coming so quickly, a tissue valve is best for you. Have one put in now, and fifteen years from now, when robotic surgery may be perfected you can have another one put in w/out much pain and w/out having to make the lifestyle adjustments Coumadin requires.

See the dilemma? Now you have two very different opinions to weigh. Just some food for thought. . .

Keep us posted on your progress and welcome to the forum.

Melissa

 

[JetService]

Thank everyone. Wow! The prodecure must be pretty successful considering how vibriant and plentiful this group is. Always great to hear from people that have been through it. The first site i found was a general health board with heart section and no one responded to my question. I thought, "Oh my GOD! NO ONE SURVIVED!!!! AHHHH!! But this site explained why. You're all HERE! This is great. I do suspect any second opinion will produce the same results, and would really do it more for the peace of mind knowing its the right decision. My cariologist did make it clear that this is inevitable and I honestly can't think of any reason to put it off other than scheduling around work. My wife has even already planned it for me telling me if I do it the week before Thanksgiving, I should be back by Christmas. LOL!!! My cardio did talk a little about the bio valves but explained at my age, I would probably wear it our very quickly. I do agree with you about the prospect of new technology but right now I'm definately leaning towards the mechanical and hoping for advances in anticoagulents rather than valves. Knowing that that is the only downside of this (other than being filleted) makes me more comfortable. I did check out the grade on the hospital I would have this done and they were rated at 'As expected'. I don't know the name of the surgeon that has been picked for me, but I'm looking forward to looking up his/her name. I do have an insider with my sister working for a family practice group who do some recon for me. Also my neighbor's brother is a retired cariologist from Ohio and he said he would talk to him and 'see what he thought'. Anyway, I'll let you all know how the cath goes tomorrow. I was hoping to sneak some fishing in afterward, but it sounds like I have to lay down for several hours afterward. Phooey! I do have one question that maybe someone can answer. My cardiologist did give me a percentage that represented something but I couldn't tell what he meant. He said the normal range for the heart is 50-55%. After the initial echo, he said it indicated my heart was at 60% which was fine, but the TEE showed 45-50%. He said that meant my heart was working to hard and he changed my med from Avatal to Lisinopril. I'm not sure that was all about. He did assure me that this is not permanent and once the valve is replaced, it will be normal again. Thanks all! I'll look forward to coming back!!

 

[JimL]

D, the percentage you mention is consistent with the EF, or ejection fraction. I've been told that the maximum is 75%, that 75% of the blood is pumped out of your heart with each beat. Some say that anything over 50% is normal. I was around 30% before surgery, and 69% a year after surgery. I recently had an echo in preparation for my two-year check-up, but the technician was short on factual information -- "Oh, you're normal." I have to wait until I see the cardiologist to find out what my EF currently is. Of course, it could be something else entirely.....

 

[Guest]

Hi D!

Well, I don't think I can add too much more to all the advice and words of wisdom that you've all ready been given. You will come through this surgery with flying colors!
You might try sending a private message to one of our other members-- tlhudson --- he's from Ft. Wayne and he might be able to recomend you to a good surgeon. He and I both had our surgery around the same time last year (Nov. 8th for me ) and I know that Terry can also lend you words of comfort!!
Keep us informed on how your cath. went ....we will all be thinking about you!

Julia

 

[Nancy]

Hi D-

It's the most natural thing in the world to be anxious at this time frame. It's kind of a shock to find out that you need heart valve surgery. We usually hear about folks who have had bypass surgery, but not too many of the people we know have had valve surgery.

I applaud your doctors for being right up front with all the information. When you know what you're facing, you can adjust after a while. This is a fantastic site to educate people with valve problems. There are many, many here who do lots of research into their conditions. Knowledge is power and once you get over the initial shock, start reading as much as you can take in one sitting. It's important and will eventually give you some peace of mind. Make sure you read the personal stories section on the main page.

This surgery is highly perfected, the surgeons who do it are very expert and dedicated. They are in people's hearts many times each week, and can address anything they find. The risks are low, and the 2 percent that you heard is right on target, and probably even better for someone who is in good health. You will be taken care of with great skill and kindness while in the hospital. You will be hooked up to every kind of gizmo imaginable, all of them beeping and making noises, and all to keep your little bod safe. You will do just fine with your surgery, and when the healing is over, you will be feeling much better, will have your quality of life back and will have your life saved.

My husband has had 3 valve surgeries, 2 lung surgeries and has a pacemaker (he had rheumatic fever). He has mechanical valves, and has been on Coumadin for 25 years. When he was a younger man, such as yourself (he's 72 now), he was very active and didn't miss too many oportunities in life.

So stick here with us and we'll get you ready for opening day, we know just how to do it.

Best wishes,

 

[csutherland]

My husband was pretty freaked as well when he was told his "moderate" AR had become "severe" AS in 6 months! Still don't understand why it changed from regurgitation to stenosis, but that's history!

As for the 2nd opinion--in Springfield Mo there are two networks, St John's Medical Center and Cox Medical Center. Jerry was under my insurance plan at the time that was with Cox. All their cardiologists are on one floor in one clinic, not necessarily "together" but it seemed unlikely one would disagree with another. So we paid extra to have his echo tape looked at by a St John's surgeon--one that we had heard was top notch. He said he couldn't even read the echo tape, it was defective or something. This Surgeon did say that he would prefer a stentless pig valve if he did it.

Later we were told by Jerry's Cox cardio that the St John's surgeon didn't have the proper type "VCR" or whatever kind of viewer he needed. We just thought "whatever" and went ahead with the Cox people, and everything turned out fine. By the way, the Cox man strongly recommended the St Judes Mechanical.

It's really hard to get a 2nd opinion we think. Perhaps in a bigger market than Springfield it would be easier.

 

[JetService]

JimL, that sounds exactly what I heard. Thanks for the info!! I wanted to research that further. Much appreciated. mommy3, I look forward to meeting my fellow Fort Wayner...errrrr....Fort Waynite...hmm. I've ready met a follow Hoosier (who fishes even!). This is a great place. My next step is to get my ugly mug on here so you folks have a grill to put the words to. I noticed tlhudson had his work done a Parkview. A fine facility whom I owe a lot of gratitude for saving ALL my childrens' lives. All three when into NICU after birth. #1 has born in shock with cord wrapped around his neck, #2 had a subdural hemotoma and went downhill fast and #3 needed to be bagged for five minutes because he was just shy of stillborn. A class act, that place and they're good at saving babies' lives. Heck I was even born there in '66 and had my gallbladder removed about 7 years ago there. Lot of memories there for me. However, my heart medical group seems to do business at Luthern Hospital across town. Its supposed to be a primo heart center in the area also. Nancy, like others here, your message is extremely heart-warming. I'm grateful to hear your husband's story. It's extremely inspirational and really puts things into perspective. I can see where I'm going to turn when I need a lift (outside of my biological family). I hoping for some miracle during tomorrow's test and they tell me they made a mistake and everything is normal. hehehe. OK, back to reality now. Talk to you later!!!!