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Looking for information...concerned
Hello all....I honestly didn't think I would ever be posting here at age 52 with a valve condition but I am and I do, and I would appreciate any guidance you all can offer as I have been more than a little concerned about my diagnosis and what lies ahead...basically, I had been diagnosed with moderate to severe asthma back in 2012 which was successfully brought under control in the recent years..with that, comes annual checkups involving heart evaluations with my allergist...after 5 years of hearing normal beats in my heart, at the end of last year, during my checkup he asked, "Have you ever had a heart murmur?" when I said I hadn't, he said, "Well, I think you have one now...I recommend a checkup with your primary or cardiologist".
Fast forward to this October...during my annual physical with my primary, I brought this up and he listened and confirmed the murmur. He recommended an EKG and an Echo..the EKG showed normal sinus rhythm with a little blip showing a potential abnormality which he thought could be either MVP or MVR...when I went for the echo a few days later, they confirmed Mitral Valve Regurgitation and recommended a Trans Esophogheal Echocardiogram as a follow up.
Yesterday, I met with the primary to discuss the results..he said LV function is good but the cardiologist wrote "possible severe MVR". I'm assuming this is what the TEE is for..however, I'm not focusing on "possible"..I'm assuming it's there and it's severe, hence the anxiety...based on my age, the fact that I was clear at least over a year ago, and now all of this. I should also say that other than the murmur, I have no symptoms..3-4 times a week I do a brisk walk at lunchtime that involves a very steep hill near where I work and I don't experience any shortness of breath or lightheadedness. However, I'm coming to realize that being asymptomatic means nothing with MVR in terms of why I would acquire this condition. Also, I am guilty of over researching this condition online. Again, this brings up the anxiety.
So any help from those of you who have gone through this would be greatly appreciated..My concerns are quality of life afterwards, why the cardiologist is unsure as to whether the condition is severe or not after an echo was done, why did this condition come on so fast from the murmur to the potential seriousness of the regurgitation and anything else you may consider helpful to maybe alleviate my concerns. The TEE is scheduled for December 11th.
Thank you so much for your help..
AmbassadorMR, December 1, 2018 1:29pm EST
First off, welcome to the Heart Valve Forum and you are indeed in the right place for discussion of your condition and the feelings and concerns associated with being diagnosed with a heart valve issue. My issue and treatment involved my aortic valve but since the aortic and mitral valves are located on the higher pressure pumping side of the heart (left), they are most often affected by heart valve disease. Since you indicate that you have already done a lot of research online regarding mitral valve disease, I won't immediately refer you to additional information links. Instead, just know that all of us who are or have dealt with the diagnosis, treatment and recovery from heart valve surgery have also felt the concerns and anxiety that you describe.
It is not unusual for a heart murmur to show up "out of the blue" without prior history or recognized symptoms. Valve disease is often associated with and more prevalent in aging hearts but it can also develop in young patients. Research hasn't yet determined the exact cause of valve disease progression but when it shows, it is important to monitor it closely and decide with your cardiologist and surgeon on the best timing and type of treatment for you. The technology and treatment choices available for valve disease have never been better and the vast majority of us as heart valve patients are successfully treated and resume normal active lives.
Let us know here in the Forum once you have your TEE results so that we can further discuss your particular situation and possible treatment plans. We are here to help and support you in any way that we can. Your feelings and concerns are valid and understandable so don't hesitate to reach out to any of us for encouragement.
Yours In Heart Health,
Tony81266, December 1, 2018 4:30pm EST
Thank you so much for your reply...I have never been great in handling personal medical diagnoses unless it was straightforward and resulted in medication from a pharmacy that very day..so you can imagine how his “wait and see” period is going with me..I will certainly update this post once the TEE is done and it is reassuring that many people here have gone down the road that I may travel and are leading normal and active lives. I am still trying to comprehend how I went from a clean bill of health one year, to a murmur the next year to possible severe MR the next..I’m just very happy I have had regular checkups and it was noticed before significant symptoms appeared.
It is very helpful to know that there are support forums like this available to us who are in need of it!
Suzette, December 2, 2018 12:16am EST
I am somewhat new to this forum, but I have been dealing with MVR For about 3 years. I'm sort of the opposite of you, I had symptoms from the beginning.
One thing I have learned is that some people have symptoms & others are asymtomatic. With me, I had shortness of breath which doctors sometimes brushed off as my asthma. But I always made a point to say that is was not my asthma. It was distinctly different.
I will be having surgery Dec 7. It was supposed to be Dec 3, but got pushed back because of an inpatient emergency.
Having the TEE will give your doctor a better view of the heart. I don't know how much you have researched about having .TEE, but just so you are prepared, you will get a numbing spray & numbing drops to swallow. It is a weird feeling, but you are ok. The nurse kept telling me, "you're ok. We have you hooked up to monitors. You're breathing fine even though it feels weird."
So just remember that! For me, the numbing spray and drops were the worst part. So if it feels uncomfortable for you, just tell yourself, this is the worst part & I'm ok.
I wish you lots of luck on Dec 11! I hope you will have a better insight on your murmur and plan of care to treat it.
Tony81266, December 2, 2018 8:14am EST
Thank you, Suzette...I wish you all the best with your surgery. I know my primary told me these surgeries now are routine and very tolerable.
‘I greatly appreciate your advice on the TEE..I have done some research on TEE and in talking to my primary, he says that a standard echo while very informative, is only a 2D image and cardiologists sometimes need a better view of the heart to see where the MVR is coming from based on the heart’s positioning in the body. I am supposed to be receiving something from the hospital as to how to prepare but haven’t reset as of it so any advice is greatly appreciated. Good luck on the 7th!
AHAASAKatie, December 3, 2018 9:06am EST
Good morning, I am so glad that you are here with us and sharing what is happening in your world. I can provide the patient education resources about HV disease and treatments for you. I see that several of our members have already responded, which is wonderful. Please let us know how else we can help you. Best Katie
Chg1122, December 8, 2018 3:11pm EST
I am in the same boat, 51 and have been told I have tricuspid valve regurgitation. I have no symptoms other than I cannot breath because I am so anxious.
Alexisnwill, December 10, 2018 4:23pm EST
Hi Tony -
I am 31 years old and currently going through the same thing. I could do intense workouts and feel fine but walk up a short flight of stairs and feel very short of breath. This went on for years and doctors told me I was out of shape but I knew it was something else. This past July, my doctor heard a murmur that was never there and told me to get an echo. The echo showed mitral stenosis (Rheumatic) which resulted in my cardiologist ordering a TEE. That procedure takes an hour and is no sweat! The TEE confirmed my mitral stenosis was severe and I had a valvuloplasty (balloon procedure through a catheter) to open up the valve. It was not as successful as they thought so I am scheduled to have a full valve replacement. While your outcome may be different, know that many doctors do this procedure every day and I have met many people recently who have had the same surgery and feel so much better. The anxiety is defintitely normal but try not to jump to conclusions before you know what the deal is. When you get the final diagnosis and plan of action, get a second opinion as (at least in my experience) doctors approach this situation differently.
Best of luck!
Tony81266, December 11, 2018 3:31pm EST
Thank you everyone for your kind words...the TEE was done today..basically one of the chordae had severed off the mitral valve which is causing the regurgitation..the cardiologist said that the rest of my heart is “perfect” so the surgery will be low risk..and that we can do a repair of the valve. He said that I would probably start experiencing symptoms in about a year or so if nothing was done but that as of right now I’m not limited in any activities. I do know from (extensive) research that any sort of severe regurgitation will involve surgery sooner rather than later rather than a “watch and wait” process..I think they want to do it now while the heart is still in great shape. So we are looking at a 6 month window with a visit to the surgeon in a couple months.
i won’t lie, it’s still a shock and my wife is pretty distraught but things could have been a lot worse...fortunately, the murmur was detected right from the onset and evaluation was done within 12 months of that..my heart other than the mitral valve is good and he said it’s low risk and once I have it, in his words, I will be able to live a normal healthy life...the strange thing is how it severed in the first place...he called it a freak thing...I’m just glad I had it checked.
i appreciate everyone’s support and input...whatever advice you have going forward I will greatly appreciate!