Mitral valve regurgitation ~ echo results tomorrow

[Melissa]

Hi all. I have been lurking here for a couple of weeks after my visit with a cardiologist. I've always known I had a "heart murmur" but no doctor has ever told me that I needed to have it monitored.
Last year, I was diagnosed with hypothyroid, and it has been treated and hormone levels are normal. So...I started having symptoms of thyroid disorder (or what I thought was thyroid). Swelling, couldn't catch my breath, trouble with exercise. So, I have every blood test imaginable, and my endocrinologist says it's not my thyroid. He says that because of my murmur, I should have an echo "within the next couple of weeks."
Well, three weeks ago, I had the echo. The tech and doctor downplayed it, but I could tell that the regurgitation backed up about 3/4 of the way into my other chamber. The exercise stress test, my heart rate shot up quickly, and I made it about 5 minutes. I had been running for 2-3 miles until last fall/winter. The tech tells me that since I'm not exercising as much that's why I'm feeling so bad. In passing, the doctor says, "We usually treat with betablockers, but your blood pressure is low, so we probably can't do that." He also said, "You have high blood pressure in your lungs." But then again didn't seem really concerned. They both said that the fatigue, breathlessness and swelling weren't related to the regurgitation.
So....you know I went home and googled. I discovered that the doctor had downplayed something that looks pretty serious and like I will probably need surgery. I'm not so worried about the surgery as I am that the doctor will say that I DON'T need it. My symptoms are getting worse, and the stress is sending me over the edge. I had to stay home from work today, because I couldn't sleep last night, and I can't breathe well today.
I guess my questions are
1) what should I listen for the doctor to tell me tomorrow?
2) I am pretty sure I need surgery now, so if he puts me off, what should I say?
3) Reading online, I think this is pretty serious. What if he acts like it's no big deal?
4) What should I expect after tomorrow's appointment.

Thank you all SO much for any information. I'm having a really hard time with the anticipation, as well as the symptoms.

Melissa

 

[doberman]

Hi, I went through a similar situation had a second opinion and did end up having surgery. Saying that though you do need to trust your doctor, do you have access to a 2nd opinion? is your doctor a cardiologist? If you can see another cardiologist I would try that. It is understandable that you are worried. As I mentioned I endured a similar ordeal and did end up seeing a doctor that specialized in congenital heart conditions. I assume you are not a doctor so I wouldn't get too caught up in what you read on the internet as you will just scare yourself silly. What I found from my situation was that not all doctors agree on when surgery is necessary. Let your doc's know how stressed you are about this and make sure you get a clear picture of what he discovered from the Echo.
Hope this helps, I found talking to people on this site really helped me feel better. Keep asking questions as there are a lot of very caring folks here at VR.com they will help you through this. Stay positive as you will get through this.
John

 

[Melissa]

Thank you so much for your response. Yes, my doctor is a cardiologist. He is also my mother's cardiologist. She had an aortic valve replacement and triple bypass two years ago, which I think has left me with PTSD lol. I know that my issues are nothing like hers, but her surgery was a life changing event for me, not to mention for her.

I guess the closet control freak is coming out in me. I want to feel better so badly, and if I need surgery, I don't want to have to wait...I think I would drive myself crazy. I also have a time frame in my mind of when I want to have the surgery, if it's warranted. I'm a speech pathologist in an elementary school, so the end of May would be best. I know...that's pretty funny since it will be on their schedule, not mine.
I understand that the doctor probably didn't want to tell me anything until he had all the information, but I wish he would have at least told me that my symptoms could be related to the regurgitation. It's really hard to not know *why* I feel so crappy all the time. Hopefully, he will give me more information tomorrow.

Your advice is right on the money, and I'm going to follow it. I've GOT to just relax and "let go and let God" "rejoice in my trials" and thank God, because I know that there are things that could be so much worse.
Pity parties are much more fun with a glass of wine, so I think I'll go pour one right now
Thanks again for your response. I am so thankful that this group is here!

 

[Marcia58]

Melissa,

I'd had a "heart murmur" for years, and when i developed your symptoms, my cardio told me it was time for surgery. The way he put it was, "We've reached the point where the benefits outweigh the risks." There is a point when the extra effort begins to damage your heart--you don't want to wait until then! Ask your dr what you heart's pumping efficiency is.

I'd say you'd benefit from a 2nd opiinion (cardio, or cardiac surgeon). You might to talk with a cardiac surgeon, since you're hoping for a little more aggressive approach, rather than just "watchful waiting".

Listen to your body. Listen to your instincts. And remember, you're paying the doctor--he works for you! An employee who isn't doing their job is a candidate for replacement.

Good luck tomorrow, and don't be afraid to question the doc, have him write the info down, give you a copy of records and reports. God did NOT retire on the day after creation and leave your dr in charge!

Marcia

 

[Melissa]

Marcia,
Thank you so much! I will take notes and I am going to ask for a copy of my results. I think I will talk to him about a referral for a cardio surgeon tomorrow regardless of what he says, and go from there. I know (from reading this board) about the different types of surgery, and I guess I should check online for doctors who have experience with the least invasive (I'm assuming the robotically assisted?).
I tend to go on and on and on when I'm nervous, so I will resist that urge now
Thank you again for your responses, and I will let you know what the doctor says after I see him tomorrow.

Melissa

 

[Luana]

Well, three weeks ago, I had the echo. The tech and doctor downplayed it, but I could tell that the regurgitation backed up about 3/4 of the way into my other chamber.
Melissa

Melissa, unless you are an echo tech, I don't know how you were able to see the regurgitation. I've had quite a few echos, and I can't tell one thing from another on an echo and have never been positioned well enough to see the screen.

My cardiologist suggested a cath after my echo didn't look so good, before he could be sure about recommending surgery. An echo is not the most reliable test. Probably your doc is going to want more information before making a decision.

 

[Greg a]

Hi all. I have been lurking here for a couple of weeks after my visit with a cardiologist. I've always known I had a "heart murmur" but no doctor has ever told me that I needed to have it monitored.
Last year, I was diagnosed with hypothyroid, and it has been treated and hormone levels are normal. So...I started having symptoms of thyroid disorder (or what I thought was thyroid). Swelling, couldn't catch my breath, trouble with exercise. So, I have every blood test imaginable, and my endocrinologist says it's not my thyroid. He says that because of my murmur, I should have an echo "within the next couple of weeks."
Well, three weeks ago, I had the echo. The tech and doctor downplayed it, but I could tell that the regurgitation backed up about 3/4 of the way into my other chamber. The exercise stress test, my heart rate shot up quickly, and I made it about 5 minutes. I had been running for 2-3 miles until last fall/winter. The tech tells me that since I'm not exercising as much that's why I'm feeling so bad. In passing, the doctor says, "We usually treat with betablockers, but your blood pressure is low, so we probably can't do that." He also said, "You have high blood pressure in your lungs." But then again didn't seem really concerned. They both said that the fatigue, breathlessness and swelling weren't related to the regurgitation.
So....you know I went home and googled. I discovered that the doctor had downplayed something that looks pretty serious and like I will probably need surgery. I'm not so worried about the surgery as I am that the doctor will say that I DON'T need it. My symptoms are getting worse, and the stress is sending me over the edge. I had to stay home from work today, because I couldn't sleep last night, and I can't breathe well today.
I guess my questions are
1) what should I listen for the doctor to tell me tomorrow? The straight facts and their implications
2) I am pretty sure I need surgery now, so if he puts me off, what should I say?TELL HIM that upi feel strongly that sooner is better than later!
3) Reading online, I think this is pretty serious. What if he acts like it's no big deal? Stress to him what this uncertanty is doing to you and your family
4) What should I expect after tomorrow's appointment. Satisfaction and knowledge that you are fully aware of your own health and that you are master of your destiny

Thank you all SO much for any information. I'm having a really hard time with the anticipation, as well as the symptoms.

Melissa

Jake, a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking and there is swealth of knowledge here for the future ..... Questions to include I have highlighted here

-a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary


-what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well

 

[Melissa]

Well, I guess I was way off. The echo results came back normal. The doctor says I have "minimal" regurgitation, and it's not causing my symptoms. Resting echo: " normal motion and thickening of all ventricular segments EF 60%
Mild mitral regurgitation and mild tricuspid regurgitation by color flow. Mildly elevated RSVP estimated 37mmHg. Exercise capacity: diminished
The Holter monitor showed five "episodes" so he is going to send an event monitor for me to wear for a month and I'm having a CT scan next week to rule out anything pulmonary (like embolism) that would cause the shortness of breath.
I feel like I should be on Mystery Diagnosis

Thanks for all of your responses and information. This is a very caring forum

Melissa

 

[Lynlw]

Thanks for the update. I'm glad your heart cho looks good, but I know how frustrating it can be trying to get a diagnoses so they can figure out what will make you feel better. i hope you get some answers soon

 

[Melissa]

Thanks Lyn. Yes, it's very frustrating, and I'm trying so hard not to go into pity party mode. I'm beginning to think I'm crazy, but my husband sees the symptoms, and he's concerned, too, so I don't think it's all in my head.
I guess I'll just do the best I can with how I feel. And stay off google lol

Melissa

 

[Michelle D]

I was really short of breath lying down and that's when I knew something serious was going on. I could breath pretty okay while upright. Everyone has some regurgitation so ask for the number. Mine was +4 which is the worst, I had a 3 on my tricuspid and they didn't worry about that and it did get better after my mitral was fixed. So find out that number, and if it is a 3 or more go to a new doc, if it is a 1 or 2 they usually don't worry about it.