Yearly echo--AV regurg. increased to mod./severe

[francie12]

Hi everyone, Nervous Mom here...
Matt's yearly echo was last week and the results were a mixed bag. The good news--his heart dimensions, including asc. aorta, have remained relatively stable from the last echo. Excellent. The cardio credits Lisinopril. The not-so-good news--the aortic regurgitation has increased from moderate to moderate/severe, and it is now a question whether he may be at the beginning of being symptomatic (trouble keeping up in PE).
I thought I was walking in there like an educated pro, ready for anything but expecting no real change...by the time we got to the echo room, my heart was banging...and then the brand-new word "severe." I feel like a complete wimp next to all of you who have been through so much, while we are just getting our feet wet...but I'm worried.
With very mild symptoms and mod./severe regurg. along with mod. dilated LV and asc. AO, can I continue to feel confident that a yearly echo is frequent enough? (The left atrium is mildly dilated and the "main pulmonary artery segment" is significantly dilated.) The cardio thinks so, and we do trust him, but you guys seem to be in the know beyond so many doctors...I just need to run it by you!
Thanks in advance. By now you all feel like old friends.

 

[MrP]

Having another echo in a year or sooner if symptoms worsen seems safe and reasonable. Ranking regurgitation is a subjective measure, and Matt's degree of insufficiency may have only progressed slightly over the last echo. I know firsthand the symptoms of moderate/severe aortic regurgitation include not being able to run as far as others in PE without becoming winded. He should definitely avoid heavy lifting as you know, and instead of running distances or exertional exercise, power walking two or three miles a day will benefit him in the long run...he may want to gradually work up to this distance. Ask him to let you know if he begins having any sharp chest pain which may be indicative of increased regurgitation.

Has he had a CT scan (with contrast) or MRA, and if he has, how large is the ascending aorta from this measurement? If he hasn't had either of these tests, I'd talk to your cardiologist about the advantages of establishing a baseline measurement now and keeping a keen eye on any increased dilation over the years. An echocardiogram will only provide limited visibility of the ascending aorta and less accurate than CT scan or MRA.

All my best,
MrP

 

[MrP]

Francie,
I found an article by Melvin D. Cheitlin, MD at Univ of Calif, San Francisco School of Medicine regarding when should surgery be considered for chronic regurgitation...from American Family Physician, Nov 15, 2001/Volume 64, Number 10. He writes..., "in asymptomatic patients with moderate to severe aortic regurgitation and normal systolic function, periodic quantitative evaluation of left ventricular function in the absence of a change in clinical status is recommended to look for the development of left ventricular dysfunction. No evidence supports a specific time between evaluations, but the current recommendation is every six months."
MrP

 

[francie12]

Mr. P--Thanks for all your input, past, present and future. I know you've "been there," and it has been extremely helpful to hear from you. I guess my biggest concern now comes from being told by one of our cardios that the LV dimensions tend to grow at a faster rate when you move more into the "severe" catagory...and Matt's LV (and LA) were already growing fast enough when he was just "moderate!"
To answer your question about the MRA, yes, he has had one and the dimensions of everything agreed with the echo numbers. His asc. aorta is big, but in the three years we've been monitoring it has not enlarged further, I'm happy to say.
And thanks so much for the article. I had a feeling I had read that 6 month intervals were appropriate for mod./severe regurgitation but wasn't sure where it was. I'll be in touch with Matt's cardio to discuss it.
Hope all is well on your side and heart concerns are in the background for you.

 

[gijanet]

I think you are right to be concerned.

I think you are right to be concerned.

(((hugs)))) I know all too well what you are feeling! Katie rode at moderate for a couple of years, but once we stepped up to that severe category things progressed pretty rapidly. While we weren't in crisis mode, her surgeon was adamant that we address her valve before any permanent damage was done to her heart. In Katie's case, it was her ventricles that we were concerned with. Our surgeon told us that there was no magic formula to predict when that would occur, so sooner was better. (Remember, though, that Katie's heart is truly unique, so Matt's might not deteriorate as soon! )

The things that concern me: Matt is beginning to exhibit symptoms and his left atrium, left ventricle, and his pulmonary artery are already dilated. I would insist on echoes every six months, and, if he begins to become more symptomatic, I would insist he be seen ASAP! BTW, we just graduated to six month echoes today. We've been doing them every three to four months!!! Bet our insurance companies are breaking out the champagne bottles! I know you like your PC, but you might even consider a second opinion. You can send a copy of his latest echo and the verbage to just about any of the surgeons at the bigger ped heart centers and they will give you a second opinion at no cost. (I did this several times!) It takes about four to six weeks to get their input, but it might provide some peace of mind.

Keep us posted. You guys will be inour prayers. Hugs. J.

 

[francie12]

Thanks Janet. I was hoping you'd see this and weigh in. Congratulations on Katie's moving to six-month echos. Now THAT is moving in the right direction! Matt's symptoms, though mild, are relatively new and are concerning me more from the gut level than the big word "severe." That's a good point about sending echo tapes, etc. for a second opinion, if needed. If Matt requires surgery while he is still in the pediatric catagory we will go to your guy, Dr.Bove... (I hope he will still be practicing for the next few years in case we--and all other children in same or similar boats!--need him.)
Hugs of congratulation to you and Katie. Give her a kiss from us!