Followup with cardio/TEE

[Buckeye in MI]

Hi,

Seems like I'm "in the waiting room" indefinately. My TEE showed Moderate to Severe (more on the moderate side) so I am to have echo's every 6 months. Interesting... The TEE showed basically that I am leaking but really no other signs. My doc did tell me that if I ever do need to get my valve repaired/replaced that I need to go to a center that is well versed in the procedure. I assumed he meant the Cleveland Clinic but he told me that the University of Michigan also has a well respected center for this.

So, the TEE is a better test for regurgitation that is for sure. Since I've never had a TEE before this I may have been "moderate to severe" for a long time and not even known it. The 6 month echo's are in my future.

I feel like I can relax a bit now.

Thanks and I appreciate everyone's advice.

Buckeye in MI

Moderate to Severe MR
In the waiting room
6 month echo's

 

[ALCapshaw2]

You may also want to check out Beaumont Hospital in Royal Oak, MI.

One of our members reports that they do more OHS per year than Cleveland Clinic and are rated above U of M !

'AL Capshaw'

 

[PegB]

Good for you!!! Now you just have to put this out of your mind until those 6 mo. rechecks are due. I know it seems hard, but you just can't keep worrying about it. I would go in for my echoes, and then wait until I saw the Dr. with the results, and when he would give me another 6 mos, I'd feel like I just won the lottery. Six mo. is so long when you're not worrying. They might just have that clip thing worked out by the time you need it (running a clip up your artery to your valve and putting it into position...no more leak!). I was just telling my Dr. today that I would like to wait for the clip, and she said I have SEVERE regurg, and I would never qualify.

Hope you still stick around here in the meantime. I have one week from this Mon. I'm sort of swinging from feeling nauseous at the whole idea to "let's get this thing over with". I go up this Wed. for my all day pre-op.

Keep in touch, and I will try to keep my post-op reports uplifting

 

[susieq14]

Hi Jane,

Very good news that you don't need surgery like you originally thought. What a relief for you! I'm happy for you.

I guess this means that I'll be seeing you in the "Waiting Room" which is good because I'm hoping that your relaxed attitude will rub off on me! I'm also on 6 month check-ups and I'm anything but relaxed especially the weeks right before. Actually I had a cardiac MRI in May (at my prior appointment in Nov 05 I asked for a test more definitive than just an echo - was hoping for a TEE but my cardio said MRI) and now my cardiologist said that the MRI shows my MR was more on the mild to moderate side instead of the original moderate to severe diagnosis in August 04. And he didn't even schedule me for an echo in December just a check-up with him. I've been fretting over that ever since. I worry how he can know what is going inside my heart without doing an echo! I don't know which is worse the uncertainty of not knowing when you might need surgery or finding out that you need it ASAP???? I know I should be thankful that "all is well" and just put it out of my head like PegB suggests but some things are easier said than done.

Sorry to put a damper on your good news. I am really happy for you!

And PegB I wish you all the best as you prepare for your upcoming surgery.

Susie

 

[Adrienne]

In the meantime, Buckeye in MI, I would do lots of research on not only the clip procedure but the minimaly invasive mitral valve repair which is done with a small incision between the ribs on the right side. I wish I could have had that, but my situation was too complicated. I still feel very lucky since I was able to have a repair.

As for PegB, good luck at your pre-op on Wednesday and on the 25th for your operation. I have an appointment with my cardiologist on the 25th. I will be thinking about you when I am there!

 

[Buckeye in MI]

Yes, I am a bit relieved that surgery isn't "around the corner" and I am trying to take PegB's advice to just let it go. Actually, I am doing pretty good with that. I look at it as by getting the TEE done I really know what is going on and there isn't any putting my head in the sand. My doc told me that really I may have been this way for years and I may stay this way for years. The only reason I know is because of my family history which forced the doctor's to take a better look.

I do have 2 brothers with St.Jude valves and I see how well they are doing which is a calming effect as well!

My ejection factor is 68. That made me very happy because 2 of my older brothers (51 and 56) have cardiomyopathy and both were asymptomatic. Their ef's are both 35. I have an aunt who is 86 with a leaky mitral valve which has been leaking all of her life too. So, I think it could go either way.

I am interested in the clip procedure. This is all so new to me really so the 6 month check will just give me some more time to digest and research.

PegB, I've got the 25th marked for you! I have a strong feeling that you are going to breeze through this. Can't wait to hear about Dr. Cosgrove...

Jane
Buckeye in MI
Moderate to Severe MR
In the waiting room...

 

[davidfortune]

My ejection factor is 68. That made me very happy because 2 of my older brothers (51 and 56) have cardiomyopathy and both were asymptomatic. Their ef's are both 35. I have an aunt who is 86 with a leaky mitral valve which has been leaking all of her life too. So, I think it could go either way.

Jane
Buckeye in MI
Moderate to Severe MR
In the waiting room...

Please realize that EF (Ejection Fraction) is not the definitive measure for when surgery is necessary. Dilation of the Left Ventricle is more important since that indicates that the heart is enlarging to compensate for the diminished valve function. My EF has actually increase over the last 6 month as my left ventricle has enlarged. 6 months ago my EF was 45 - 50% and now was rated at 60 - 65 % (which is in the Normal range) through TEE . My regurgitation was rated at SEVERE at that same TEE. Translation - the valve is leaking like hell and the heart is working like hell to get enough blood to my body. The enlarging (this is really BAD) heart muscle is pushing a higher PERCENTAGE (EF) of the blood but a LOWER overall blood volume since the available blood volume itself has increase due to the significant increase in volume of the left ventricle during diastolic (or rest).

All this is BAD eventhough my Ejection Fraction (which is the percentage but not the actual volume of blood) has increased from when my heart was smaller.

Not intended to worry you but intended to make sure that everyone understands that EF is not the definitive measure of heart function. Your cardio should be looking more at left ventricle measurements than EF to determine timing for surgery.

Actually I had a cardiac MRI in May (at my prior appointment in Nov 05 I asked for a test more definitive than just an echo - was hoping for a TEE but my cardio said MRI) and now my cardiologist said that the MRI shows my MR was more on the mild to moderate side instead of the original moderate to severe diagnosis in August 04. And he didn't even schedule me for an echo in December just a check-up with him. I've been fretting over that ever since. I worry how he can know what is going inside my heart without doing an echo! I don't know which is worse the uncertainty of not knowing when you might need surgery or finding out that you need it ASAP????

Susie - I would NOT accept "I'm just gonna talk to you in 6 months". You are absolutely correct. He CANNOT know what your heart is doing without an echo. I rescheduled my last cardio appt because scheduling didn't have the echo scheduled prior to my cardio meeting. My comment to them was "I like Doctor Harper but I'm not driving all the way over there to have him say "How do you feel" without him having the ability to see inside my chest. That would be a waste of my time and his. They rescheduled the echo then the appt with the Doc. This the echo that determined my heart was enlarging to the point that it was time for surgery. If I had not had the echo then we would have missed this critical development. We then went for TEE after that to get even more definition of regurgitation and heart valve structure. An echo IS MANDATORY. Sorry to contradict your doc (I normally wouldn't be that brash) but talking to him without an echo - y'all may as well just do lunch.

 

[debster913]

Buckeye--

Isn't a nice feeling, though, to know that surgery doesn't seem to be in your immediate future? I bet you'll be able to relax, but try not to let the "waiting room" thing worry you. I know when my cardio put me on 6-mo checkups instead of 1-yr checkups, I started thinking, will this be it? Will I need surgery this year? I learned to let the worry go, and suddenly, two weeks after my most recent checkup, I'd become symptomatic. I never expected it. I thought I wouldn't need surgery for another 10 years or so, but the wondering was always in the back of my mind when I'd see the cardio.

One thing I'd learned was not to ignore my symptoms. I'd inititally thought my dyspnea and fatigue were stress-related and maybe minorly related to my valve, but as far as I knew, I had mild regurgitation (third quarter at school was ending, and I'd had lots of grading to do). I wasn't planning on seeing my cardio until our already-scheduled checkup/echo in September, and I thought I'd just wait and mention it to him then. It wasn't until my principal called me at home (after I'd had such severe symptoms that I was rushed to the hospital from work) and told me I wasn't allowed back until I saw my cardio that I went to him, thinking he'd sign me off and I'd return to work the next day. Instead, I got on the fast track, with a severely leaking valve ,to surgery

If you start having symptoms (I truly hope you don't, and I assume you're not symptomatic or your cardio would be testing you further and sending you to a surgeon), see your cardio right away! I had to fight with my cardio's secretary to get in and see him. She said he'd wouldn't be available for another three weeks, and I couldn't just sit at home and wait! I got in ASAP. Dyspnea and fatigue, among other symptoms, are a red flag.

Keep us updated and don't be a stranger. Take care of yourself!

David: I see my cardio in 6 months for another check-up without an echo. Maybe I ought to just invite him out for lunch instead and we can talk about my valve! That would be a bit more entertaining!

Debi (debster913)

 

[Buckeye in MI]

For David,

Oh, I much realize that ef isn't an indicator for surgery. The cardioyopathy in my family scares me more than anything so with an ef of 68 I am doing well. I have 2 of 3 brothers with a St. Jude valve that replaced their mitral valve 16 and 8 years ago and they are doing so well. The mitral valve can be repaired or replaced. When you start to lose heart function not much one can do about that. Heart disease in my family is quite interesting as my 51 year old brother is the only one of us 5 children that does not have/had MVP. However at age 50 he is diagnosed with cardiomyopathy.

I have no enlargements of anything at this point. I am happy I am having the 6 month echo's to stay on top of what is going on. At this point I just figure I'll relax until 6 months are here! I promised my cardiologist that I wouldn't forget about the 6 month echo. Once my heart starts to show weakness of anything I'm ready to fix it.

Buckeye in MI
MVP/MR
Moderate to Severe MR

 

[susieq14]

Why is this so confusing?????

Why is this so confusing?????

Please realize that EF (Ejection Fraction) is not the definitive measure for when surgery is necessary. Dilation of the Left Ventricle is more important since that indicates that the heart is enlarging to compensate for the diminished valve function. My EF has actually increase over the last 6 month as my left ventricle has enlarged. 6 months ago my EF was 45 - 50% and now was rated at 60 - 65 % (which is in the Normal range) through TEE . My regurgitation was rated at SEVERE at that same TEE. Translation - the valve is leaking like hell and the heart is working like hell to get enough blood to my body. The enlarging (this is really BAD) heart muscle is pushing a higher PERCENTAGE (EF) of the blood but a LOWER overall blood volume since the available blood volume itself has increase due to the significant increase in volume of the left ventricle during diastolic (or rest).

All this is BAD eventhough my Ejection Fraction (which is the percentage but not the actual volume of blood) has increased from when my heart was smaller.

Not intended to worry you but intended to make sure that everyone understands that EF is not the definitive measure of heart function. Your cardio should be looking more at left ventricle measurements than EF to determine timing for surgery.



Susie - I would NOT accept "I'm just gonna talk to you in 6 months". You are absolutely correct. He CANNOT know what your heart is doing without an echo. I rescheduled my last cardio appt because scheduling didn't have the echo scheduled prior to my cardio meeting. My comment to them was "I like Doctor Harper but I'm not driving all the way over there to have him say "How do you feel" without him having the ability to see inside my chest. That would be a waste of my time and his. They rescheduled the echo then the appt with the Doc. This the echo that determined my heart was enlarging to the point that it was time for surgery. If I had not had the echo then we would have missed this critical development. We then went for TEE after that to get even more definition of regurgitation and heart valve structure. An echo IS MANDATORY. Sorry to contradict your doc (I normally wouldn't be that brash) but talking to him without an echo - y'all may as well just do lunch.

David,
Please don't apologize for being brash because I find your posts and opinions very informative! I also thank you for your comments and for confirming what I've been thinking since May when my card said I'll see you in 6 months but just for an appointment. (He actually did this once before i.e. just had me come in for a follow-up and didn?t order a 6 month echo.)

Ironically in November 2005 after my 3rd echo I asked him which numbers on the report he was watching and he circled the LV Diastolic and LV Systolic Dimensions but emphasized the systolic was more important. According to the printed report a normal reading is 2.0 - 3.5 cm. Well my LV systolic has changed from 27 mm at my first echo in July 04 (done at a different facility and read by a different cardio) to 3.0 cm in November 05 and 33mm on my May 06 MRI. In the letter he wrote to my PCP, he wrote: ?Her end-systolic dimension was 33 mm, which is only slightly larger than it had been by echo when it was 30mm. This is probably just a difference in technique.? Well isn't that even more of a reason to do another echo in 6 months instead of a year???

Jane: I?m so sorry for hijacking your post!

 

[davidfortune]

Deb,

That's an interesting thought. My comment was specifically directed to pre-surgery management and evaluation. Your cardio can't tell jack squat just by talking to you and listening to your heart and even EKG (unless symptoms are much stronger than you want to let them get). In order to be pre-emptive and prevent permanent damage an echo is necessary to evaluate heart dimensions.

Post surgery - I would think the same philosophy applies. They can't evaluate valve or heart function without an echo. Not sure if the standard for echo should be 6 months or annual unless you are BAV. Based on the growing research that BAV is apparently closely associate with Cystic Medial Degeration and post valve-replacement dilation of the ascending aorta and/or aortic root, I would expect 6 months echos to be the requirement for life (or at least till it doesn't matter any more) of a Bicuspid Aortic Valve patient. I personally would not settle for annual echos with BAV. Changes can occur more rapidly than predicted and symptoms may lag heart damage by a considerable period.


Susie,

Measurement do vary slightly do primarily to either technician skill or interpretation technique (doctor or tech measured at an angle vs. straight across the ventricle). I personally would wonder at the purpose of a follow up without an echo. It sound like going to the eye doctor just to talk about your vision. If you have noticed a change well then he knows something needs to be done. However glaucoma, and diseases of the retina don't always have noticeable symptoms so the doctor needs to look inside the eye via testing. Same with valve function and heart function. If you have obvious symptoms the everybody knows you gotta do something NOW. If you don't have symptoms - do you want to wait for damage to the heart to cause symptoms? I don't so he's gotta see inside - therefore echo...

Yes on the concept that more data points could confirm a slow increase in size or confirm that it really was a variation in technique.


Jane,
Great to hear! For you and your bothers (that they are doing well I mean). Glad to hear that you and your doc are actively monitoring ventricular measurements.

David

 

[Mary]

David,
Don't be surprised if you don't have six month echos after surgery--with or without a BAV.

 

[davidfortune]

Mary,

Something else for me to look into. I don't like that idea at present but I'll get back to you on it after I do some research (haven't looked into that one in detail yet). However, it does sound like BAV patients should have more frequent monitoring for life. Thanks for the thought.... One more thing on my "upcoming discussion with cardio" list and my "additional things to research list".

David

 

[debster913]

David--
I had an echo 6 weeks after my surgery, so that was almost two months ago now. At my follow-up with the cardio last week, he said he was very confident in how my valve looked on the echo (he wouldn't let me go back to work until he saw my valve) and saw no need to do another one for a year. He still wants me to come see him in March so he can see how I'm feeling. He says he can tell my condition (in particular) a lot just by looking at me. Said if he hears a murmur, he'd skip the echo and do a TEE. His justification for only doing an echo yearly is because of Blue Cross; they get very itchy about "too many" echoes. I'd had two this year simply because one was diagnostic after I'd begun displaying symptoms, and the other was post-surgical follow-up.

Understand the reasoning behind the pre-surgery justifications for more echoes, but I was just being facetious. Actually, I wouldn't mind taking the cardio out to lunch. He's an interesting guy and I'm sure we'd have a great conversation.