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[briansmom]

Just a couple of thoughts -
1. Please stay on top of the enlarged ventricle. As you can see from this site most people who go into this surgery healthy, come out healthy. So fix this BEFORE it causes permanent damage. My son's heart is permanently damaged which really sucks!
2. My son has an On-X valve and we couldn't be happier with it, but please see the post about a new valve surgery that is done via catheter. Anyone who has an artificial valve will definitely not be able to have this surgery on the next go round, but maybe if you go tissue, then the next surgery will not even be a surgery (very hard to predict the future though).
3. Talk to a surgeon also, not just cardiologists.

Best of luck, keep us posted.

 

[tcopel]

Hey CBS

Just wanted to pitch in again.

It's natural to feel the shock from all this crap your going through (and your family) but once you recover so to speak, start focusing on the decisions that your going to have to make.

1. When to start seriously considering surgery. Educate yourself on what parameters this decision is made (ventricle size, age, ect) so that you can participate with your cardiologist and cardiothoracic surgeon. Of course, your doc is your best resource but it doesnt hurt to know how they are basing this decision. A second opinion by a trusted doc is invaluable and I know that you are considering this. Google, talk with people who have been down this path, medical articles pertaining to aortic regurg, ect. Be proactive in understanding why someone advocates surgery now or why they want to delay surgery. By the way, it seems to me that cardiologists tend to be conservative in general and delay surgery sometimes with risks that are not inconsequential.

2. The huge decision is the valve choice. It is a topic that is regularly brought up here on VR. You will find members here that are clear in their opinion about what the best choice is. Consider what is suggested by your doc but I would encourage you to find out the pros and cons of each valve for yourself. Consider your lifestyle, your age, what your thoughts about repeat surgery (necessary with biological). The bottom line is that it is definitely a personal choice. For me, I simply wanted to avoid anticoagulation but that's just me. The vast majority of individuals here have done very well with coumadin and have probably avoided a repeat surgery that may be in my future. So, you see, the debate between valve choices is decisive issue and, for me, the hardest decision that I ever have had to make. Better to start now with finding out the pros and cons of each valve choice so that you can feel comfortable. My cardiologist initially recommended a mechanical valve but after plowing through intimating information, I just knew in my heart (sorry) that I would rather try another route and he understood my reasoning
There are some really smart dudes here on VR that can give you detailed and substantial information. AlCapshaw is one of them.

3.Please remember, that your life has not ended. It is just a detour. Once your mended so to speak, all will be well. There are runners here on VR that make me sick with how many miles they run.

Keep us posted.

 

[cbsmith]

3.Please remember, that your life has not ended. It is just a detour.

That's exactly it. I can't live scared (writing this so I believe it).

 

[Magic8Ball]

The fear will disappear with knowledge.

I think you are right to talk to another cardiologist and also talk to a couple of the good surgeons that are around your area.

Your initial cardiologist doesn't sound too cluey.....delaying surgery 'just because its better at your age' doesn't sound that great of a reason and also the fear of anticoagulation and refering to it as a blood thinner does not put her high on the score sheet for everyone here.

The heart will recover from abuse remarkably sometimes but its not always great to rely on that...an early intervention can be better sometimes.

Also, the size of your heart will (in my uneducated opinion) be more than likely be caused by the dodgy valve and the extra work needing to be done to double pump the blood through it....not blood pressure.

Generally, cardiologists want to treat you with pills, surgeons want to open you up...unless you get a good one of either you will have to push for what you think is the best compromise.

& yes, all the reasurance in the world from us strangers isn't going to help in these early stages....we all cried, swore, did the why me, worried about leaving family behind etc etc.....then we read, asked, read, asked and for me, by the time i was sat there waiting for surgery i was so calm it was funny. I knew everything that was going to happen to me and in which order and it wasn't that bad...other than the cough pillow (search on that)

Again, welcome, you have found the right place and in no time you will be calm...ask away, everything from what to ask the cardiologist to what to pack into your hospital bag and where to sleep when you get home.

 

[cbsmith]

That's a good attitude.

I'm feeling better today. Forced myself out of the house this morning for a 7 mile run. That helped.

Maybe I can focus on work today too.

Thanks again everyone. It's great to have a place like this where people understand what you're going through.

 

[ALCapshaw2]

Thanks again everyone.

I went for the stress test today and had another visit with the cardiologist.

The stress test went well. My exercise tolerance is excellent. No issues there.

The Doctor went back and looked at the echo. She said the regurgitation was strong-moderate. Not quite severe yet. Based on her review, I was not born with the issue as the valve looks like a normal shape.

She did say, that I will eventually need surgery. It's just a matter of when, which we're going to try and determine. (She said the longer we can delay the need for surgery the better given my age.) My left ventrical is enlarged. She wants to find out why. Since my blood pressure is high, she put me on Antacand. If the blood pressure comes down, and it shrinks my heart, that will help answer the question. However, if the heart doesn't shrink, it's more likely due to the regurgitation which would put me closer to surgery.

She also said she would recommend a biological valve since I would need to be on blood thinner with the mechanical valve. I need to do some research there.

I can continue to run - just no marathons which I was planning. I can stick with what I am doing currently (25-30 miles per week). Also, no real weight lifting - light toning work is allowed though.

I go back to the Cardiologist in three weeks to review my medication tolerance.

I have a lot more to learn.

MY recommendation for you at this time would be to start interviewing SURGEONS. You already know that you have a valve issue and the options for Cardiologists are to try to prolong the life of your existing valve with medications or to refer you to a Surgeon.

Surgeons like to FIX the problem BEFORE there is Permanent Damage to the Heart Muscles and Walls.

Since your main issue seems to be Regurgitation, you may want to look for a TOP Rated Aortic Valve Surgeon who *might* be able to REPAIR your Valve rather than replace it.

Note that Valve Repairs are more common with the Mitral Valve, but for Regurgitation of the Aortic Valve, it is sometimes possible to achieve a repair. This is only done at MAJOR Heart Centers to the best of my knowledge, notably the Cleveland Clinic. And it needs to be done BEFORE there is Permanent Damage. After that, REPLACEMENT is the only option.

Just for a point of reference, I had Aortic Stenosis. One Cardio recommended surgery right away but I freaked out and sought a second opinion. The second cardiologist thought I might be able to get another 3 to 5 years out of my valve with BP medication.

ONE YEAR later, my valve area had decreased to the 'trigger point' for surgery. It took 2 months to meet the recommended surgeon and set a date.
I got there "just in time".

One of our famous expressions is:
"The Worse it Gets, the Faster it gets Worse".

This is especially true for the Aortic Valve.

'AL Capshaw'

 

[cbsmith]

I would like to talk with a second cardiologist. My Primary Care Physician recommended the current one I'm seeing. Apart from blindly picking one out of United Healthcares Network, how can I find a recommended Doctor?

I live in North/Central NJ. Is there a resource that rates Doctors?

 

[ALCapshaw2]

I would like to talk with a second cardiologist. My Primary Care Physician recommended the current one I'm seeing. Apart from blindly picking one out of United Healthcares Network, how can I find a recommended Doctor?

I live in North/Central NJ. Is there a resource that rates Doctors?

You may be able to get some very basic information (where they went to medical school, where they did their residency) for Free, but for anything more, you have to PAY. One source is www.HealthGrades.com

Another option is to GOOGLE keyword Physicians or Physician Ratings, etc.

Bob H. (a.k.a. TobagoTwo lives somewhere in NJ - maybe he can help)

I've had great success simply calling Surgeon's Offices and asking specific questions. One gave me an appt in one WEEK, another called me back after sending my echo and cath reports.

IF you are interested in pursuing a REPAIR, I expect the only place you will get any useful information is from a Top Rated Aortic Surgeon. The Cleveland Clinic has an online 'Second Opinion' Service for a few hundred $$$. They probably do more Repairs than any Heart Center in the country.

'AL Capshaw'

 

[cbsmith]

I go to the second cardiologist a week from tomorrow.

I may also do the Cleveland eClinic. I need to look into that some more. Has anyone used that service?

So much for focusing on work today.

 

[tcopel]

Repairs should only be attempted by surgeons who are very experienced and have done many. Dr. Zehr did my surgery in Pittsburg, and thus far, am doing well. I am not sure what he could do for your individual case but you could google him and look at his CV, training and whatnot. I suspect there has to be many surgeons capable in your area in NJ. Perhaps others here on VR can come along and suggest good docs in the region. I know that several individuals here on VR have gone to Cleveland Clinic and I believe most have very positive things to say about it.

 

[cp172]

Hi CB,

Welcome to VR! I too just recently learned I will be needing a valve job. Six years ago a sugeon told me to see him in 10 years but it looks like my mitral valve will need fixing sooner than I had hoped. I certainly understand the freaking out phase of finding out you have a problem. This forum is full of great folks ready to answer any question. Also I do not think you will find anyone else who can understand you better than the VR family.

 

[ALCapshaw2]

CB,

You may want to start a New Thread in the Pre-Surgery Forum stating that you are looking for a Surgeon in NJ.

I was hoping Bob H. (a.k.a. TobagoTwo) would chime in as he lives in NJ and is one of our most prolific and thorough responders.

'AL Capshaw'

 

[cbsmith]

CB,

You may want to start a New Thread in the Pre-Surgery Forum stating that you are looking for a Surgeon in NJ.

I was hoping Bob H. (a.k.a. TobagoTwo) would chime in as he lives in NJ and is one of our most prolific and thorough responders.

'AL Capshaw'

I contacted Bob via PM. Thanks for the suggestion. He gave me some good information.