Cardiac questions

[Jim]

I will be having my 4th echo done next week w/ a follow up cardiologist appointment 3 months later if nothing shocking shows up on the echo. I have experienced no changes in my heath from last year; however, I will still go in thinking it's a 50/50 chance that this will be the year. Last year, the cardiologist said that if my heart experiences any change in size, that he will advise me on an operation.

I often wondered what are the best questions one could ask when visiting the cardiologist. Could you folks give me some advice on practical questions to ask about my condition that would keep me better informed? My present condition is that I have aortic stenosis w/ severe regurgitation. I don't know what my ejection faction is, so this will be one of the questions I will ask.

Also, if the cardiologist recommends an operation, are there other tests I should get done so the surgeons will be better informed on the specifics prior to operation?

Thanks,
Jim

 

[Marguerite53]

hope others will chime in for you

hope others will chime in for you

Hi Jim.

I'm still waiting, too, so my advice is limited. I have found it very helpful to have copies of all echo reports sent to me so that I could try to decipher them (with some wonderful help from the people on this forum!). If yours have all come from the same place, then changes in your condition will be more obvious as the reports should be consisitently produced. Mine are from all over the place!

I found it very interesting to ask the cardio when she would recommend me to a surgeon, that is, at what diameter (of the aortic valve opening). Many on this forum suggest that a surgeon may want to proceed once the opening falls below 1 cm squared. Surely there are many other factors which they consider, too. My cardio does not recommend a surgeon until the opening closes to .75 cm squared. I am now at .95 and am scheduling a conference with her as I do not really understand why she is waiting.

I have also asked her what she listens for, as she spends a great deal of time listening thru the stethoscope.

It is also very important to note any changes in the size of the heart (enlarglement due to compensation for the weakening valve), so be sure to find out if your heart has changed over time.

I found it very helpful when I went in for my last echo to really quiz the tech who was performing the echo during the actual test. He was happy to oblige me all my questions regarding what he was looking at and how and why he was where he was in the exploration. I learned a lot about how the blood is travelling through my heart and body. When I quizzed him about the size of my aortic valve opening, he said, oh, .75 I think. Then I mentioned that that was QUITE a change from 6 months ago and he didn't realize there were past echoes in my chart (different cardios). He then assessed those (as a tech is supposed to do, actually) and changed his number to the .95cm squared. I have been frustrated by this conflicting measure, but unwilling to "throw the tech under the bus" by mentioning it to the cardio. They are supposed to compare past readings, so his reassessment was appropriate. My intuition is that my "time" is coming up sooner than later, also, so that is why I have scheduled this conference. (I also have a son graduating from college in May and a daughter graduating high school in early June and I really don't want to miss either of those because of a pokey cardiologist!!)

Hope this helps. I'm sure others will be along with more ideas.

Good luck!

Marguerite

 

[tobagotwo]

I think Marguerite has steered you right. She's a smart cookie.

If you're interested in actually knowing where you are in things, you will need copies of the echo reports you have had, preferably from the last few years. The cardiologist's staff usually provides them with no problem. Comparison is important, because for parts of understanding your plight, you are your own best measuring stick.

If you're interested, but don't want to know "too much," then I would suggest you ask the cardiologist about how your heart is handling the stress: Has the heart enlarged enough to be concerning? How big is your aortic valve opening? At what point will you move ahead, to avoid permanent damage that would remain after the surgery? Those are fair questions.

The fact that you have both stenosis and regurgitation is not unusual for a potential valve recipient, but it is a sign that your heart is working very hard to supply you. The combination is usually a result of fairly heavy calcification of the valve. It also means that you are likely to be nearing surgery, since your regurgitation has been labeled severe.

Basically, your heart is struggling very hard to push the blood out through the stenotic (narrow) aortic valve opening, to your body. But then the valve doesn't close all the way, so some of it leaks back (regurgitates) after the beat. Very frustrating for your heart. Sisyphean effort.

Figuring out "when" is something of a dilemma. The point I would stress is that at under a cm², the measurements are not terribly accurate, even from a catheterization. Of course, most interventional cardiologists won't admit to that. The calcification seems to be partly to blame, as it can block the actual aperture from in front, behind, or from the side, like people standing in the doorway. The catheter's pictures don't always show the whole crowd.

Also, the changes to the size of the heart's walls and chambers are generally much more indicative than just the valve opening size, especially with the margin of error. A heart with both stenosis and regurgitation is under more stress than is made apparent by just the valve size.

Best wishes,

 

[Jim]

Re Cardiologist questions

Re Cardiologist questions

Thanks for the advice everyone. I think my cariologist is on the right track looking very closely to any changes in the size of the heart. After my initial reading, he prescribed some high blood pressure medication to attempt to help w/ the stenosis. It seemed to have worked since my heart actually reduced in size from my original visit to the second. It was funny since my wife thought this meant that everything was going away and my heart would get better (denial). Thanks to this forum, I had to bring her back to reality.

On this visit, I will request the echo copies. I may even post it to hieroglyphics experts in this forum to help me decipher what the heck it means. I almost want the doctor to tell me that it is time to get this done. I am probably going to be in a job transition the next year and want to be healthy out of the gates when I get started. This valve problem has been hovering over me for the past 4 years and I think it is going to put me on hold in deciding about an upcoming job transition.

Thanks again for the advice. Keep it coming.

Jim

 

[ALCapshaw2]

Jim,

Several of us got to the table 'just in time' so I am a strong proponent of the notion that "SOONER IS BETTER".

IMHO, it would also be better to be recovered from your surgery before undertaking a new job, not to mention insurance issues. Be sure to tell your cardiologist about this issue.

I would just come out and ask for a referal to a surgeon. If he refuses, then "let your fingers do the walking" and start calling around to see a surgeon on a self referal. Ask your cardiologist for a copy of your Echo TAPE(s) as well as the written report. Surgeons like to look over the tapes and make up their own mind about how/when to proceed.

'AL'

 

[Jim]

Re Echo Test

Re Echo Test

Well, I had my echo today. I did not receive an urgent call from my cardiologist so I guess it can wait until my official visit w/ him in March. I did take your advice on asking the tech some questions. My first question was whether I had a biscupid or tricuspid valve. She said that it is often too hard to tell if there has been a lot of progression in calcification.

My second question was "where is my aoritc valve in all this stuff I see?" Interesting enough, I asked at the right time because she was about to show a top view of it looking down. What an amazing sight! I could see the leaflets that looked quite calcified and not closing all the way. I can understand why it would be difficult to tell whether it was bi or tri cuspid w/ all the calcification.

Thats all for now. I will keep everyone posted if any new news comes up in March or before then.

 

[Phyllis]

I think it's hard to tell from the echo if the valve is bicuspid. They thought ****'s was, but after the operation that was one of the questions I asked the surgeon and he said, "no, just extremely calcified!".

 

[Nancy]

One of the best things you can do for yourself is to ask for copies of each test that is done. That way you can compare them line for line at your leisure and the questions will almost ask themselves. So start with the echo that was just done and also ask for the copies of all the other ones.

 

[Marguerite53]

Jim,

Jim,

Jim. Jim. Jim. Aren't you more curious? We are!! Please ask to have the copies of all your echoes faxed or mailed to you. The most recent one still will have to be read by the cardio. They take forever. They are supposed to personally view the film and make their assessement. THen they write a little blurb summarizing their assessment at the bottom of all the stats, or on a separate page. It is quite interesting what they are saying about YOUR heart!! Once you get the copies, you can start looking over all those fancy numbers. You won't know what they mean and it will really make you wonder. Then you'll come up with your own questions and the cardio's office (or this forum) will be there to help you decipher it all.

My cardios (I've had 3 in 25 years) all have a special nurse who fields the calls to the doctor and answers questions patiently and thoroughly,or tells you how to get an answer. Use them. have you looked at your bill for these things??? Those people are there for YOU and you've already paid for them! It's great. Knowledge is power. Please get after it!

Here's wishing you "mild" and almost normal results. Good luck!

Marguerite

 

[ALCapshaw2]

Jim,

In addition to getting copies of your echo reports (and tapes) I recommend that you start interviewing SURGEONS . . . NOW, before your cardiologist says, "Oh, it's time you have surgery" and you find that the top surgeon in your area has a 3 month waiting list.

Remember the Boy Scout Motto: BE PREPARED

'AL'

 

[Jim]

Re Cardiac Visit

Re Cardiac Visit

Great advice guys! I hate to use excuses but I am in the middle of a very large work project I cannot pry myself away for the next couple of weeks. I will promise everyone I will request the echo reports and share the results w/ the group sometime before my visit. I PROMISE! I agree that it would good to have these beforehand so I can ask more intelligent quesitons when I visit the cardiologist in March.

Al, thanks for the advice about interviewing the surgeons beforehand. Who do you call to get information about the surgeons / hospitals you are interested in? I would like to get the best surgeon who has done several minimal invasive surgeries. Any advice in this area would be great. I also think it is important to figure out how your insurance would work outside of network and whether you have the right company / insurance plan.

Thanks again. Keep up the good advice!

Jim