new one seeks advice

[7tonemonte]

Ok Ill try to keep this short. First I was turned on to this site by Knightfan2691.I was told a few weeks back that I have severe aortic regurgitation,due to a bicuspid valve. and I needed an aortic valve transplant asap! I went to see another cardiologist for a 2nd opinion and this on ( who came very highly recommended) told me it wasnt as urgent as I was lead to believe and according to "uptodate" a cardiologist "bible" that my numbers werent up to recommended levels for transplant surgery yet. I was put on niphedipine to aid my heart. The numbers I was given for ejection fraction were still above the recommended level for replacement. I need to have it done eventually but now I guess the decision lies on me as to when. Just wandering what some opinions are on this matter. I am 35 years old and have a wife and 2 1/2 year old daughter. Do I wait it out for a while and moniter the situation after this medication and check the echograms for 6 month intervals or do I go and get this out of the way? Now I am leaning towards riding it out for a bit after talking to a family member who is a dr, but would like some input on this from you all who know best! Thank you for your input!
Tony

 

[Ross]

Hi Tony. I thought you were going to ask where Cort was.

Do you have your results in hand that you could post?

 

[Guest]

I am 35 years old and have a wife and 2 1/2 year old daughter.

*sighs*

Tony, bud, you forgot the most important element of this introductory information ... your 1st gen Monte Carlo . He he he

Tony and I know each other through the First Generation MC Club. When Tony first posted about his heart issues, I spotted the topic title and thought someone was asking about me...heh...was I shocked when I read Tony's initial and subsequent posts about what he was experiencing now.

Tony, I'm glad you posted. I'm sure people will start giving you some replies/insights/etc. shortly.


Oh, and Ross, I'm at home ... sadly enough .



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Wouldn't that be something?" ... Finger 11 ... '1 Thing'

 

[cam4est]

when to have surgery

when to have surgery

Tony,Of course you have to make the choice that best suits your lifestyle but here is my observation for what it is worth. Before my first PVR in March of '04 I was having lots of symptoms and let it slide, attributing them to old age(46), hard work, whatever. This was because I didnt know I had a heart "issue" and because my husband had been laid off and I was the sole breadwinner. By the time I had surgery I was in the gutter with right heart failure, severe fatigue, very, very SOB, and zero exerc. tolerance. AFter that surgery I worked hard at rehab, got myself into MUCH better shape, lost 25 pounds and felt GREAT by the time a year went by. It took me a lONG time to recover because I had no physical resources. The 2nd time I had OHS this past Sept, I was in good shape, wasnt in failure, and the symptoms had only been noticable for a couple of months. It was MUCH easier in the first 3 months than before. Even though I am still having a stamina issue at work, overall I felt better afterwards than the first time. All this to say, dont let your heart get to that point before surgery. It is WAY better to go into it in a 'healthier" physical and emotional state than at the last minute when you think you are going to die and sometimes wish you would just get it over with. This was my experience for what it is worth. Good luck on your decision. Karen

 

[Christine]

Hi Tony, welcome.. cool another "neighbor" - i'm just a hop, skip and a jump from you in Pottstown.. I too had a biscupid aortic.. my situation was a little different as I didn't have a choice.. bacterial endocarditis did me in.. on my death bed by the time they correctly diagnosed me.. so I may not be the best person to weigh in on this subject.. I agree with Ross, would need to know some numbers (ejection fraction etc..) I was 35 when I had my aortic replaced 4 years ago.. I believe if I (and my GP) had been on top of my BAV, then I would have had more options available to me rather then the emergency mechanical valve as my heart was too weak to handle a Ross procedure.. so I guess I lean towards taking care of it while all is well vrs waiting until things get worse.. but weigh your options, more here will lend their opinions.. do what feels right for you..

again, welcome! hope you're not too flooded. Pottstown got hit abit.

Chris

 

[Der Biermeister]

Tony - I would advise this:

Many of the tests cardiologists use for screening are notoriously inaccurate - such as the standard echocardiogram. Numbers such as ejection fraction will jump all over the place. An echo has to see its way through a lot of bone and muscle, etc.

To aid you in your decision - try to get a more accurate test done, such as a TEE. (Trans esophogeal echo). That gives the cardiologist a much better look at your heart. I had one done last September, and it was no big deal in terms of discomfort.

I also am quite skeptical of these 6 month waiting periods for review. My heart deteriorated quite bad in the six months prior to surgery - it supprised all the docs. I only hope now that I have a complete engine overhaul, I am able to "remodel" it like so many do.

 

[7tonemonte]

Ok sorry I didnt reply sooner but power went out last night. My ejection fraction was 59%. and my LV end-systolic dimension was 47 mm. Im just learning some of these terms so forgive me. Im not experiencing any real excercise intolerance as far as shortness of breath and/or lightheadedness or dizzyness. Is anyone else on this Nifedipine and has this helped out at all? I was told that patients on this medication generally are helped by it after surgery also, meaning that people who have taken this recovered better and more quickly. Seem right?? I am learning alot here on the site, maybe reading too much because this is turning into a roller coaster for me.Every time Ive made a decision I read something to change my mind. I am making an appt with the surgeon at Lankeneau...(spelling??) hospital and hoping to get some further info with him. I will definately ask about this TEE test.Thanks for the help so far, and any input on the test results Ive posted will be appreciated. And yes Cort I did forget my Monte Carlo.. but it is in my profile! Right now it has been put on the back burner till I figure out what is going on with this stuff.
Tony

 

[hensylee]

Hey, Tony. Welcome to VR. Cort is a good guy to send you here. You'll get lots of information from this site, while on your journey to the mountain. We are glad to have you aboard.

 

[Christine]

Hi Tony, Ross, correct me if i'm wrong, but 59% is not bad for EF.. if I remember correctly, 65-75% is normal, 40-65% isn't great, but not "heart failure", below 40% is when they classify it as CHF (heart failure) of course symptoms play a big role in when you need to have it done.. to give a little perspective.. I was in CHF for at least 6 months before being properly diagnosed (hindsight into my symptoms) when DRs realized what was going on, my EF was 22%, I could barely walk down the hallway, couldn't keep anything down, ankles were swollen, as other parts due to retaining fluid..

I agree, a TEE gives a much better picture of what is going on.. after that comes the catherization, to give even a better picture.. the echo is the first step in tests to determine problems.. I was admitted to the hospital from the Dr. office and had the TEE same day.. I had to wait a week for the cath as I had the infection still in me (bacterial endocarditis did my valve, probably from a dental procedure) once given the all clear, the cath was done, they had hoped to send me home on meds to bring the pressures down before doing surgery, but I was too bad off, surgeon cleared his schedule and I was his the following morning.. the good news and my point to all of this, as bad as I was, within a month I bounced back.. my EF was back in the low 60's within 30 days, after 90 days and since then i've been in the high normal.. I now have some PACs and PVCs that flair up now and then, but my biggest challenge now is managing my coumadin, but with home testing and self dosing, isn't that much of a hassle anymore..

Tony, I feel for you and your family.. just finding out this news is nerve racking to say the least.. since we're practically neighbors, feel free to PM me if you or your wife ever want to meet or call to talk about it.. i'll keep you in my thoughts and prayers.

Chris

 

[Ross]

Well it's not terrible, but keep in mind that surgeons like to get in there before damage begins and Cardiologists try to wait until it just begins. From the very limited info given, I'd say you have a ways to go yet, but I would need word for word results from documentation. The drug is ok for now, but it doesn't make recovery any quicker. Nothing makes that any quicker.

 

[epstns]

Hi, Tony!

Welcome to The Waiting Room, the virtual room where many of us await our own turns at valve surgery.

My situation is somewhat different than yours -- I also have a "probable" bicuspid aortic valve, but mine has manifested itself as aortic stenosis, a reduction in the opening capability of the valve. Your regurgitation is the inability of the valve to close fully, thus leak (just like a burned exhaust valve. . . ). Same cause, different effects.

I'd tend to side with those who recommend getting the best measures you can, then find a cardiologist you can trust and discuss plans. I'm now in year 4 of a holding pattern, no real symptoms but we know what's coming -- just not sure when.

Again, welcome.

 

[strawberry]

Hi Tony,

I don't have much advice to contribute...my aortic regurg is still mild as of the last echo. I just wanted to say hi because I see you're from Coatesville. I'm right down the bypass in Downingtown.

 

[Mary]

I'm just dropping in to say Hi and "How do you do?"

 

[Georgia]

Hi, Tony. Welcome to the site. Any friend of Cort's . . .

I'm curious about how you got diagnosed. You say you don't have symptoms; what took you to a cardiologist?

Please note that cardio's a usually conservative re: surgery. Now you have one saying you need surgery soonest, and another willing to go with 6 month follow-up. Irrespective of the second being highly regarded, you'd certainly want to get at least a tie-breaker. This will probably be the surgeon.

At your age you really don't want to wait longer than an optimal time. If your regurg is severe, you probably won't delay it long enough to make much of a difference in your home or work life. You can go south really fast with a bad valve.

Just keep all of this in mind. I'm of the opinion that you don't wait until your heart's damaged. Mine was, and it took an awfully long time to recover.

Good luck; this is a very difficult thing to deal with. And you will probably continue to seesaw for a while.

 

[jax3172]

Symptoms

Symptoms

Tony,

Just my opinion...

If you are not having any symptoms and you're tolerating exercise well, I would not rush into surgery. An echo (if done by an experienced technician under the supervision of a good cardio) is a decent test for checking the overall healt of the heart with respect to AVD. In addition to the obvious AV readings, the measurements on LV wall thickness, aortic root, ascending aorta, Pulmonary Artery Pressure, and the general health of other valves (e.g., regurge) are very helpful. You do want to get surgery before "stuff" begins to go South (like even mild heart failure or enlargement - makes recoup easier). But some folks can lead a normal life for years with an EF of approx 60 and no other problems, especially if they tolerate exercise well.

So...my suggestions: 1) get a good cardio, 2) get a good cardio, and 3) get a good cardio (with AVD experience). If you have an EF of 60, how bad can your regurge be and what else is it affecting? If you're feeling good, get an echo by the same good folks every 3-6 months and monitor things closely. If you really need surgery, you and your cardio will know it. Do not jump into surgery unless you need it.

 

[ALCapshaw2]

Welcome to our world Tony.

As has been said alrready, many cardiologists like to postpone surgery as long as possible, citing surgical risks.

Valve surgery has evolved into a highly refined art with only a 2% risk of mortality (1%) or morbidity (stroke 1%) for first time patients under the age of 60.

Surgeons usually prefer to operate BEFORE the heart deteriorates further, given that the problem WILL need to be addressed sometime in the future.

Many of us believe that the BEST person to determine the TIMING of Surgery is a good Surgeon with LOTS of experience with your valve and condition.

If I were in your situation, I would ask your cardiologists (both of them) WHO they would recommend for REPLACING (NOT transplanting) your defective valve. If they don't want to refer you at this time, you can start looking on your own, asking about their experience, especially experience with Bicuspid Aortic Valves.

You may also want to browse around in the Valve Selection Forum to learn about the different types of Tissue Valves (last 10 to 20 years but usually do NOT require anticoagulation therapy after a few weeks) and Mechanical Valves (last forever but require anticoagulation therapy for life).

After some research and reading others experiences / opinions, you will get a 'feel' for what best suits you and your lifestyle.

'AL Capshaw'

 

[jax3172]

A surgeon in your area...

A surgeon in your area...

Al makes a good point. It's best to weigh opinions between your surgeon and your cardio with the understanding that the cardio will tend to put it off and the surgeon will tend to want to get it done. I can highly recommend Dr. Bavaria at U of Penn, which is fairly close to where you live. He did my surgery. He's the Johnny Rock Star of heart surgeons in the greater Phila area. An appointment will take about 3 months to get so start now. I'd like to know more about your echo measurements but it appears that you have some time. IMO, I'd still recommend getting on that "frequent echo with a good cardio train".

 

[7tonemonte]

Ive been given Dr Bavarias name and also Dr Goldman in Lankenau Hosp. This whole proceess stemmed from a routine physical when my family dr heard a heart murmur. I told him about a sharp pain I would get every once in a while in my chest that I could feel coming on before it hit, and it was followed immediately by a numb or tingling left arm. The murmur is apparantly very severe and noticable by what 4 dr and nurses have told me in the past month. He sent me for a stress test and it kind of snowballed from there. By what my original cardiologist said I needed replacement asap. I was recommended to Dr Laporte in Paoli Hosp by a family member who is a dr and used him personally in his own heart problems. Dr Laporte is the one I trust more here and I have made an appt with Dr Goldman for mid July. I appreciate the help and advice here and from what I have gathered lately my EF of 59% isnt all that bad at all! I suppose thats good news. Ill keep everyone posted on my surgeons take on this and once again thanks to Cort(knightfan2691) Who would have known a common interest in a First Generation Monte Carlo would have helped me in this matter? Cort... Let me know if your going to montemadness in De. this month. Im gonna try and make it just for the heck of it even though my car is sitting in pieces now!
Tony

 

[Guest]

And yes Cort I did forget my Monte Carlo.. but it is in my profile! Right now it has been put on the back burner till I figure out what is going on with this stuff.

He he...I was kiddin' with you, I hope ya know, Tony . Heh...I know all too well about having to put things (particularly my Monte Carlos) on the "back burner" due to health issues. It is always frustrating....

Ill keep everyone posted on my surgeons take on this and once again thanks to Cort(knightfan2691) Who would have known a common interest in a First Generation Monte Carlo would have helped me in this matter?

*chuckles*

Ya see ... this is why I am a firm believer in meeting people. Yeah, I know you and I haven't met yet, but in my experiences, whether it be just conversations on a web board or meeting in person or a combination thereof, you tend to find you have a lot more in common than an interest in a certain car ... or a common health issue.

Cort... Let me know if your going to montemadness in De. this month. Im gonna try and make it just for the heck of it even though my car is sitting in pieces now!

He he he...sounds good . I do plan to get to Monte MadneSS this month ... just not sure yet about scheduling, etc. I may have to be back for an appointment that Monday, so it may be a very quick trip for me ... in which case, it'd be better if I could find someone to either ride with me part of the way, or all of the way, or a combination. But, plenty of time to work things out .

 

[strawberry]

I was recommended to Dr Laporte in Paoli Hosp by a family member who is a dr and used him personally in his own heart problems. Dr Laporte is the one I trust more here and I have made an appt with Dr Goldman for mid July. Tony

Tony, I have a friend, who has a friend who had even the surgery at Paoli and he's doing very well. I'll see if I can find out who is Dr. and Cardio were.