Jean's Journal

Louanna Miller  It has been monitored every 5 years with an echocardiogram. I was not aware that it had progressed to severe until my annual physical and my MD referred me for an echocargiogram at 4 years rather than waiting for the 5th year. This indicated a progression of the regurgitation from mild, to moderate to severe. Then I had a TEE and it indicated severe regurgitation with enlargement of my atrium. Was referred for surgery.

I had MV repair by Dr. McCarthy at Northwestern Medicine on August 20.

If I can answer any questions, please do not hesitate asking. We are here to support one another.

Nancy LeClair Gottlieb  I was moderate for 18 years. Live and enjoy life. Get an echo every year. Call your doctor if you develop syptoms. I joined this sight a long time ago and basically stopped visiting it until I truly needed it.

Darlene Smith  Exactly! I learned there is no objective standard and its all subject to the interpretation of the cardiologist or whoever is looking at the pictures.

Mark Wilbur  [edited/updated] My cardiologist told me that reading an echo isn't an exact science and that there is a degree of tolerance that they allow in the values. In your case, consider the time between when the echos were done and how significant is the difference between them. Also, if one is a standard echo and the other is a TEE, there will be differences between them. The TEE is considered the more accurate of the two. If the disparity between them is disconcerting to you, you should ask your cardiologist for a professional explanation. Do it soon to alleviate any worry or anxiety. Good luck to you, Jean.

Jean Hochevar  Hi Mark, my two echos where taken a month a part. One was saying moderate to severe and the other was saying mild . The mild being the latest. Neither of them were the TEE. So frustrating and unnerving!

Judy Shaw  I agree Tim. On my last echo my surgeon thought he saw an aortic aneurysm so he ordered a CT with contrast. This showed no aneurysm.

Rose Madura  Have you discussed this with your cardiologist? I also think that the technicians are only human and may not get the same measurements which is one reason they do a heart Cath and CT scans with contrast.

Mark Wilbur  Jean, there has to be a reason for such a disparity between the two reports. It's good that you have an appointment in a few weeks when you should get clarification. In the meantime, don't worry as your condition won't change much in that amount of time. I have my own curiosity regarding my last three annual echos. In my case, I know that things are progressing more than the most recent echo would have me believe. I'll see my cardiologist again in the fall and will pursue the issue further, too. Hope you get a meaningful explanation when you see your doctor!

Kim Lonergan  Yes I have it frequently. I never related it to my heart issues until recently. Mine is on my left side. I feel as if my rib is cracked. Very uncomfortable and some nights I can't lay on my left side.

Susan Lynn  Once I was informed of my regurgitation, I had more symptoms. Although it may have been mind over matter, my symptoms were definitely more pronounced with stress and exertion. You'll have more info after your TEE. Until then, do what you can to stay relaxed. You'll be just fine.

Kelly Stoll  Hi Jean. Mine went fine. I actually had a delayed reaction to the sedative (no worries- it's a "me" thing) and it still went smoothly. Honestly I got more worked up before the procedure than it was worth. Take deep breaths and try to not worry too much. It will go by faster than you think. Best wishes and thinking of you.

Susan Lynn  I was quite nervous, but the sedation was awesome! Didn't remember a thing and felt rested and energized afterward. I also had a great nurse who made the experience stress free. Good luck. You'll be fine!

Kelly Stoll  I completely agree. Several years ago I went through an unrelated health-crisis that taught me a lot about patience in regards to medical tests. I now try to always remember that no matter what my tests results say, taking the test itself will help provide an answer. It's not always comfortable and the answers may not be ones we like or hope for, but they do help us get to a place where we can say that's what it is.... that's why I have felt the way I do. Test results tell us things that are there or not there or maybe lead to other tests that eventually lead to some sort of a solution. Try to stay positive and remember it's okay to be overwhelemed. We've (almost?) all been there. By Wednesday, this will all be past.

Gina Fiorentino  This test was a snap and delivers lots of information so I felt very reassured. I was originally quite nervous, but it went very smooth. First you gargle/swallow a liquid that's a dark color, tastes kind of yucky and numbs your throat, then a shot to put you in a twilight state (which I don't remember at all), and before I knew anything else, the test was over. I "came too" and the technician was still holding my hand for comfort, and I felt relaxed. Within minutes, the Dr. told me what he saw with the pictures. Done.

Anna Jones  Hi Jean, welcome to the club. I had the same history: 2013 MVP with mild regurgitation. Oct. 2017 was diagnosed with moderate to severe regurgitation and by Jan. 2018 the diagnosis was changed to severe. I also have symptoms: swelling ankles, short of breath, extreme exhaustion. Some days there is chest pain.

My heart is compensating. However, all surgeons consulted felt that with the onset of symptoms surgery needed to happen. My former cardiologist was the lone voice against surgery. He wanted me to wait until my heart was no longer compensating. The surgeons all agreed that was a bad idea as it makes the surgery and recovery more difficult.

You will find lots of answers here and lots of people in your boat. Sending best wishes.

Steve Farthing  I had severe regurgitation and very mild symptoms. All the docs said get the mitral valve repaired soon since any symptoms at all are an immediate indication for surgery if the regurgitation is not moderate but clearly severe.

Ivana Okereke  Hi Jean, I was diagnosed with MVP a year ago with moderate regurgitation, it has progressed to severe now. I am basically asymptomatic (only palpitations occasionally) I will have repair surgery in June to fix my valve. I prefer to do it before any damage is done to my heart.

Susan Lynn  I had symptoms with exertion and was advised to have surgery before my heart sustained any damage. There are different schools of thought regarding timing; find the surgeon you trust and make an informed decision. Best of luck!

Rose Madura  Glad you are getting a second opinion. I had always been told that with my aortic valve issue, once symptoms start, on average, you need to get surgery within 2 years. But everyone is different. I actually had four opinions since I have a brother who is a doctor and his friend who is a thoracic surgeon.

Sophia Ridley  Hi, I knew I had a MVP/mild but never told to get it checked out beyond 2004. Two kids later and feeling I wasn’t firing on all cylinders but put it down to just life then hit with chest pain June 2015. MVP was severe and had repair Nov 2015. I was asymptomatic until probably a month before and was beginning to struggle. I got my notes, to find that the pre-op echo said the leaflet was redundant, I’m so glad I didn’t wait and had started the process. Looking back, there were probably symptoms but I didn’t know what they were. Now, 2.5yrs on, best thing I’ve ever done (apart from obviously my kids!). Have whooping scar that I wear with pride and can now get on with living. Can take a year to get over it, especially if have AF, and be kind to yourself 💕