Mitral Valve Regurgitation...info please

[sarahjl20]

My husband is 33 years old and has just been diagnosed with Mitral Valve Regurgitation. His cardiologist said after his echo that it is a severe leak. He is scheduled for a transesophageal echocardiogram in a week. The doctor said that will tell us what damage has been done and if the valve can be repaired or if it will have to be replaced. My husband has never had any heart issues or other "usual" problems that cause this. He is very healthy otherwise. He is having symptoms of exhaustion, short of breath PVC's and just not feeling well. I'm not going to lie, I am terrified. I am not so much afraid of the surgery as I am of the time lapse between now and the time of surgery. I don't know how far it has progressed or what our time line is before he gets worse. The doctor said it can lead to heart failure. We have three children and I just can't imagine life without my husband. If anyone can help me with information on this type of surgery, recovery and anything else that I should know, please tell me. Thank you so much!!

 

[Bridgette]

Hi Sarah

I don't really have any answers for you but just wanted to welcome you and wish you both well.
Hopefully after the TOE you will have more information including a recommendation as to if/when surgery should be scheduled.
Really, it's amazing what they can do nowadays to mend people's hearts - and if your husband is otherwise healthy he should recover well.

Best wishes and good luck
Bridgette

 

[ALCapshaw2]

Welcome Aboard Sarah!

While Heart Surgery is Serious Surgery, it has evolved into a Highly Refined Art with Very High Success Rates (1% risk of morbidity, 1% risk of mortality) for first time patients under age 60. The alternative of doing nothing is almost certain mortality within a few years.

I recommend that you browse through the Pre-Surgery and Post-Surgery Forums to see how other members dealt with their situations and emotions. Most conclude that the Waiting is the Worst Part of the whole experience.

'AL Capshaw'

 

[MikeHeim]

The good news I can give you is that you are going through the worst part right now. I went from not knowing I had any heart issue whatsoever to the operating table in about five months, which is about as fast as you can progress. Unfortunately, those months leading up to surgery are awful in that I felt like I was either undergoing tests or waiting for tests for which the end result was already predetermined. I was 28 when I went through mine, so I can at least relate from an age standpoint. The good news is that the surgical risks are minimal in this day and age, and the road you are on is well-traveled. Best wishes going forward.

 

[ponytaila1a]

My husband has never had any heart issues or other "usual" problems that cause this. He is very healthy otherwise. He is having symptoms of exhaustion, short of breath PVC's and just not feeling well. I'm not going to lie, I am terrified. I am not so much afraid of the surgery as I am of the time lapse between now and the time of surgery. Thank you so much!!

I too am waiting for recommendation on the repair or replacement of a mitral valve. I was dx'd at a GYN exam in August. Since then I have seen a family practice guy, on to a cardio, an echo, TEE and heart cath. I had a week or sometimes two between tests and/or result appointments. I agree...the time lapse is a worry. At present I am awaiting a call from the Cleveland Clinic for a recommendation. I am afraid to do too much exercise as I feel I could cause further damage, but my cardio tells me to "maintain your usual activity". You will find lots of answers, comfort and friendship on this site.
Welcome and post any and all questions. I do and have had many fears calmed by all of the responses.
Jennifer

 

[Jkm7]

We all understand your worry and stress. The best suggestion I can offer, Sarah, is to read lots of posts on this BB. So many of us have been through this safely (some of us more than once) and most of us are doing very, very well. We have plenty of young members.

If your DH is other wise healthy, the odds are so hugely in his favor of sailing through this surgery. My cardio encouraged me to continue my usual exercise and activities right up until the day I went to the hospital for my second OHS..... a mitral valve replacement. My surgeon had hoped for a repair but that wasn't possible and, in the end, I think I'm almost happy. I feared a failed OHS which would have required a third OHS. But, I am older than your DH.

Most of us agree the weeks leading up to the surgery are the worst part.
This board and the kind, generous, very knowledgable people here really helped me along. That's what we Do!

Let us help in any way possible. Ask your questoins. Most usually, someone has experienced whatever it is that comes up.

Happy you found us and Welcome.

 

[catwoman]

Sorry that your husband isn't feeling too good right now.
Once you have the TEE, you & your husband can start visiting surgeons. They'll be the best ones to tell whether a repair is in his future. They'll need copies of echoes, TEE and other procedures (probably a heart cath or angio CT scan).

I went through this 5 years ago as a patient and again nearly 18 months ago with my husband. I think I was more nervous than John before his surgery!

John's valve was repaired very successfully (with a minimally invasive incision) and his recovery was pretty quick, compared to mine.

Your husband is very young and should do just fine.

 

[Eva]

He is having symptoms of exhaustion, short of breath PVC's and just not feeling well. I'm not going to lie, I am terrified. I am not so much afraid of the surgery as I am of the time lapse between now and the time of surgery. I don't know how far it has progressed or what our time line is before he gets worse. The doctor said it can lead to heart failure.

Above mentioned are normal symptoms, including your fears, which we all feel when we face the 'unknown'. The good news are how much better we all feel afterwards.

As for heart failure, do not fret either. It has not happened and even if it does, there are medications to help until MV repair/replace surgery will take place, after which the heart muscle will regain its elasticity. The TEE results will determine the timing of the surgery. Until then, have faith that all will go well, and we all here are a living proof!

As for the recovery, the first few days after surgery are tough, but the improvement one feels each day will overcome that. Good luck.

I am afraid to do too much exercise as I feel I could cause further damage, but my cardio tells me to "maintain your usual activity". Jennifer

Jennifer, my humble advise is not to do the strenuous exercises--walking is good and safe until you hear further news. Good luck.

 

[WayneGM]

Welcome to VR. Sorry for the circumstances but glad you found us. I had severe mitral valve regurg and was able to have a repair. The OHS wasn't nearly as bad as I feared. Two and half years later, I'm feeling great and the damage that was done (enlarged heart chamber and thinning of the heart walls) has reversed itself and everything is back to normal. Best wishes and good luck.

 

[ryen0]

I'm with you sarah. This **** seems to come out of nowhere. I don't know if doctor's told the same thing to your husband, but my whole life i was told that mitral valve prolapse is non fatal, that there was no leakage, and i wouldn't need surgery. Then out of no where during a normal check up, my valve had started to leak severly and my left ventricle started to dialate. I had no idea this could even happen. I am 27 and 3 and a half months post op now, and still can't believe it happened. But i did fine, and i know your husband will too. I had minimally invasive robotic surgery, and it feels as if sometimes i didn't have surgery at all. The mental aspect and the waiting are far worse than the actual surgery. I had about a month and a half between diagnosis to surgery. The heart compensates for quite a long time, so i'm sure your husband will be fine until its fixed. please feel free to send me a message if you have any questions. the ONLY good thing about having this done at a young age is that there is a very rare chance of any complications. my surgeon said mine was a very easy repair and i was only in for under two hours. best of luck.

 

[Harmony]

Sarah I dont know if you have seen any other Cardios. I would get some other opinions. See at least 2 other doctors. Your Cardio said you can get heart failure, I have read this. So if he is a candidate for heart failure why is the doctor waiting a week to do a TEE. Also I do not believe you csn tell from a TEE if you will need a repair or a replacement. They only know when they see the valve. Good luck to you and your husband.
Tomorrow I am seeing a surgeon. I too have bad regurgation. I had a angiogram a week ago because I had a arrhythmia. The arrhythmia went away, but my valve leaks really badly. I am very upset and terrified. I dont know what I will do if they can not repair it. Four years ago 2 surgeons wanted to fix it. I had no symptoms and felt open heart surgery without out symptoms sounds crazy. I still have no symptoms but have learned that not having symptoms means nothing. Tomorrow I see 1 surgeon, next week another or maybe 2. I just just keep saying to myself why me.

 

[sarahjl20]

Mike,

Thank you very much for your feedback. Would you mind sharing with me your symptoms prior to surgery. It seems like my husband is more tired and short of breath as each day passes. He has dark circles around his eyes. Today has been a bad day. He had to stop and rest just going up the stairs. Is this normal?

Everyone's comments have been very encouraging and I really appreciate all of you sharing your stories with me. Thank you.
Sarah

 

[Freddie]

I'm kinda like Mike; I went from not knowing I had any heart issue whatsoever to the operating table in 4 days. I too had dark circles around my eyes for at least 20 years prior to surgery but had no symptoms until 12 days before surgery.

There is lots of information as you read and search around the this site.

Oh Yea, Welcome to the family Sarah, don't be shy

 

[Lisa in Katy]

If by heart failure, they mean congestive heart failure, it sounds a lot scarier than it really is. I had severe leakage for 22 years before my valve replacement, and in that time, I had several bouts of congestive heart failure, usually when I was sick with something else. A few years before surgery I went on a diuretic so my heart wouldn't have to work so hard. This flushes the fluid out and minimizes the risk of CHF.

I take it from your post that your husband hadn't been diagnosed with mitral valve prolapse prior to the diagnosis of regurgitation. Did he have a recent infection or dental work? His sudden onset must have been caused by something, and infections are the most common cause.

His symptoms sound pretty typical of sudden onset regurgitation, although if his days keep getting worse I would call the doctor again. When I first had rheumatic fever and endocardits, I had severe SOB, pressure in my chest, exhaustion, etc. for about 3 months. As my heart compensated, I felt much better and really didn't notice the symptoms anymore. However, like others have said, sudden onset regurgitation often leads pretty quickly to the OR.

Good luck to you and your husband!

 

[Mimi]

Hi Sarah,

I had a mitral valve replacement 8 months ago. I had to wait 3 months for heart surgery. Pre-surgery is very difficult because you do not know what to expect and it's difficult to plan ahead for the future. At the time, I had a 6 month old baby and I was concern for my family's future. Waiting for surgery is very stressful. The best advise I can give is to try and stay strong and take one day at a time.

Kind regards,

Liz