mitral valve and cardiomyopathy

[phil z]

My Hx. 10 yrs agohad episode Afib lasting 24 hours. Converted after sleeping. Since then been monitored via ecco and had EF 50% with slight LVH. I've had transient (lasting less than 1 min.) episodes of Afib. My EF and LVH have been stable for 10 years, including ecco done in Jan. Decided to have mitral repair and Maze Aug. 3, 04.  Immediately after surgery was in sinus tach 115/min. After 2 weeks of taching, did ecco. EF20%. Went back and looked at presurg. TEE. It was 35%. No recording of TEE post surg. Docs missed that my EF had dropped 15% since Jan. I was readmitted to hospital and placed on amiodarone. Rate dropped to 95. EP study done and revealed true sinus tach w/ no ectopic foci and no induceable arrythmias. Placed on lopressor and got rate down to upper 80's. Currently on 50 toprol xl, 81 of aspirin. My B.P. has been on the low side but is comming up slightly. Doc plans to reeval for meds in 5 weeks. EP study also revealed pressures in heart are all low. I am asymptomatic as far as CHF is concerned. I am working, can climb stairs, lay down, all with no problem. No edema. The 2 symptoms i do have are the elevated heart rate and when i'm still and especially when i lay down, from my abdomen through my chest into my head i feel my heartbeat pounding. Difficult to sleep. What do you make of this pounding? I understand the drop in Ef from 35 to 20 may be due to repaired valve. But I Never had pounding heart or elevalted rate pre surgery. Was it wise to have surg with 35% EF? Why would Surgery bring about these symptoms? I'm 34 year old dentist. Surgery done at Brigham

[beccaelizabeth]

Thanks for the info, Phil.  I wore a Halter monitor last November for two weeks after my doctor performed my last EKG.  He said that my combined symptoms (fluttering in my chest/upper body, dull moderate chest pain, hard heart beat, and sometimes rapid heart rate) and something he saw on the EKG printout could warrant further exploring from an electrical standpoint.  I wore the monitor for two weeks, and nothing "raising any concern" was found.  For the most part, I feel like I am recovering, but of course I still have concerns.  I feel foolish now for not knowing more about my own case, I guess naivety got the best of me since I have just been nodding my head to my doctor through all of this.  I will be doing some major research between now and my next appt. and if I feel like I am still not being taken seriously or that my questions are not being answered, then I will switch doctors.  I would like to be evaluated at a major heart center, too.  I think that would make me feel much more confident in my decisions.  I will be getting married within the next two years and as I mentioned before, I would like to have a second child--but that's not something I can just decide to do.  I think I should have more testing done and I should be monitored a little more closely.  Thanks again for your help and advice--the point you made about being a dentist and seeing poor dental work in patients really made me think.  Take care,
Rebecca

[phil z]

Hi again Rebecca. As far as questions you should ask, it's hard to say. I don't know what your episodes entail. Besides feeling lousy, does your heart race, fibrilate, or what? A cardiac cath is the test that measures your heart's pressures. It's probably not indicated for everyone. If your heart really does have episodes where it's rhythm changes, you might need an EP doctor.They are cardiologists who are experts at understanding heart rhythm. I had an EP study done in Boston after my surgery to help us understand what was going on. This study will let you know if your heart might be undergoing irregular rhythms. Nothing is certain but the more info the better. Have you ever worn a Halter monitor? Have they recorded any irregular rhythm's in the past several years? This going on again/off again meds sounds a bit nuts. It would drive me nuts. I don't know of any major heart centers near Virginia, but if you are really still having problems, you may want to take a trip. The clevland clinic is considered tops almost without dispute. If i had to get in a plane it's where i would go. Like i said, there really is a big differnce between doctors and often that is the difference between life and death. Sorry to sound so profound, but it's true. It's fact that the mortality rate(death rate) at major medical institutions is considerably lower than at local hospitals. I am a dentist. Some of the dental work i see in new patient blows my mind. Again, all docs are not created equally. PHIL

[beccaelizabeth]

Hello Phil,
Thanks for the support/advice!  I swear sometimes I feel like I'm just crazy over this.  I felt so sad reading the end of your response--I relate; totally.  I remember being in the hospital when I was 19 for almost three weeks and not even being able to see my brand new baby (bcs. I was in ICU)--all I could think about was that I had to make it through because otherwise, what would happen to my daughter?  That has always been my biggest concern--being there for my kiddo.  I had a small bout of counseling after the whole ordeal because I was very depressed, angry and freaked out.  I wish I had known about this website back then, because I think it would have helped a lot.  Good for you that you are exercising again--that is a great thing.  I am pulling for you!  Those little girls are a helluva motivation, aren't they?  Right now my EF is 50, highest it's been since 1996, pressures are normal, and my regurge is mild.  As for the thickening; I will have that rechecked at my next appt (10/6).  In my records, it states that there was some enlargement and thickening in 1996, but it is never mentioned again.  Is that something that can improve?  I have done a lot of reading on the subject of MVP/Regurge, but I have a ton still to learn.  I am living in Virginia Beach, VA and my doctor is not affilliated with a major heart center.  I have never had a heart cath--is that a recommended procedure for this condition?  I do know that my numbers have steadily improved (slowly) over the past 8 years, but I still go through these episodes where I lapse into some whacky unstable mess from time to time.  My appointment is in two weeks, and I was wondering if you could help me think of some questions I need to be asking (in addition to the ones you mentioned yesterday in your response).  I hate to ask you, but you have given me a lot of useful info and you seem very informed on the matter. Thanks and take care!
Rebecca

[phil z]

Hi Rebecca. I think more important than your symptoms(which can be at least partially caused by anxiety) are any signs from an ecco or cardiac cathaderization. These tests do not lie. Do you know what your EF is? Are the pressures in your heart good? Is there any hypertrophy or thickening in your heart? How severe is your regurgitation? Have there been any negative changes with any of these? These are critical questions that you better get answers to. Where on the east coast do you live? I'm in Connecticut and have my valve repair surgery in Boston. Is your cardiologist affiliated with a major heart center? You better believe all doctors are not created equally. The difference can be your life. I was diagnosed with mitral valve prolapse with reguritation in 1995. I spent the night in the ER because i was in a sustained Atrial fibrillation. I converted back to a normal sinus rhythm. For the past nine years I've been closely monitored with eccos 2x year. My EF remained unchanged at 50% with moderate to sever mitral regurgitation. I never had any symptoms except my heart would go into atrial fib about once every couple of days for only about 20 seconds. Before my surgery in August, my last ecco in Jan. was EF 50%(again no changes) Somehow my EF dropped to 35% right before surgery. They hypothesize my bad valve caused it. In other words, I waited 6 months to long. Now my EF is 20%. Amazingly, I still have no symptoms except a rapid heart rate (somewhat controlled with Beta blocker). Also i can feel my heart beating. ( especially at night when it is quiet. This is quite annoying.) Otherwise, I feel fine. They told me my heart may remain the same, improve some, or get worse. I'm starting to exercise and now it's a waiting game. I just hope for the best. I also have trouble with hypotension. We are tinkering with my meds as well. I hope to be able to get on an ACE inhibitor as well as my Beta blocker. I am 34 and this does stink. All we can do is seek out the best medical advice and get on with our lives. I think you need to find someone you can put your trust in. This will go a long way to relieving any anxiety you may be experience. I have not been anxious, I've had to fight anger and depression. I'm pissed that my heart is letting me down and I'm saddened by the fact that I may not be around to see my girls( 4 and 2) get married and have children. Most of the time I'm fine, but I do get sad. I'm trying to be optimistic. I think we all need to be. PHIL

[beccaelizabeth]

Hello Phil--hope you are well.  Thanks for your response; sorry it took me so long to get back on track!  I am curious about how your case progressed to what it is now.  Did you have any symptoms/problems as a child?  How often are you experiencing symptoms these days?  The symptoms I have been having include a dull achy chest pain that seems to stick around for a few days at a time, mild swelling at times, a hard adrenaline/fluttering feeling in my chest/upper body, and small fluctuations in heart rate and blood pressure.  In the past few years I have been on and off Metoprolol XL, lasix, and 2 different ACE inhibitors.  My doc ends up taking me off meds because my HR and BP will become very low and I'll feel sluggish, etc, but then within weeks I will start having symptoms again.  The last appt. I had, my doc told me he thought the majority of the symptoms were due to anxiety (we talked about my stress level and at that time I had graduated from college and was trying to get into pharmacy school--lots of stress!)This is not the doctor that treated me when I went into CHF, I moved back to the east coast and was referred to the new doctor by a family friend.  I am considering finding a new doc.  It may sound crazy, but I feel that he has a hard time taking me seriously because I am young, healthy-seeming, and on the go all the time.  At this point I think my biggest concern is finding out exactly where I stand because at some point in the future, I'd like to have a second child, but not if it's too risky.  Not to mention, when this all happened in '96, my original cardiologist even told me he was amazed that I lived through it and that at the very least to expect a valve replacement and meds  for the rest of my life.  This makes me curious--should I still worry about those things, or did I rebound better than expected?  Of course it doesn't help that my situation isn't super common--I don't know too many people that can give me advice or reassurance about suddenly developing serious heart problems at the age of 19.  Do you feel somewhat isolated about your health at times?  Write when you get a chance and take care,
Rebecca

[Wumpy]

I wa diagnosed about 7 0r 8 years ago with a heart murmur, I was frightened to death because my father had died on his 64th birthday from a major heart attack. I went to a cardiologist to have the echo done on my heart and he saw how frightened I was. He called me at home and told me that my heart murmur was from a leakage in my 3rd valve and the machine barely picked it up. He then stated that I could live forever with that promblem because it was so small. Should I be frightened for the rest of my life or what should I be doing. Do anyone out there have a problem similar to mine. Also I wanted to ask a question about my blood pressure medicines. I'm currently taking 3 medications to lower my blood pressure, Norvasc,Atenonol and hctz for flood retention. I spoke to my doctor about coming off of the atenonol and she stated that I could but gradually because it would make my heart palpitate, so now I'm scared to come off of the medicine due to how I'm going to feel. Do anyone have any information they could share about ATENONOL?

[phil z]

I forgot to ask something. You state you are going back and forth with symptoms. What kind of symptoms? Are you really going on and off meds? If my Doc told me it was anxiety I'd tell him bye bye. Mitral valve prolapse with regurge should be monitored very carefully. I think I waited to long and am now paying the price. Mine was severe. It sounds like yours is mild. You can live with mild forever w/o a problem. Definately have that monitored carefully.

[beccaelizabeth]

All is well so far, thanks.  I am curious about your symptoms and history, if you wouldn't mind sharing, of course.  You are the first person I have had contact with that has been around my age and had these issues.  I realize how fortunate I have been, but I am still constantly going back and forth with symptoms and on/off meds.  Still trying to make sense of it all.  I hope you are taking good care.

[phil z]

Hi again.I'm not sure exactly what you would like to know about my history that is not posted in the forum. I'd be happy to share any info with you, just ask. Right now my EF is 20% but i have zero symptoms except for some fatique related to my surgery done this August 3. My name is Phil and please feel free to ask any questions you might have.

[R2B2]

I'm 14 mos, post MV repair (46y.o.) and other than still trying to drop weight and BP am feeling GREAT! You will too. Give it time. I too tried to analyze everything (I suppose it's normal ...evidenced by my still reading this site)but eventually you have to move on or you WILL drive yourself crazy. I wish you the best of luck.

[phil z]

Thank you for your concern. I'm kind of in limbo. My heart function seems to have equal chances of getting better, worse, or remaining the same over the next 6 months to a year. Until then, I'm trying to get on with my life. Hope all is well. PHIL

[beccaelizabeth]

I can sort of relate to your problem--I'm 27 years old and experienced CHF/Post-partum Cardiomyopathy at the age of 19  when I had my daughter.  I have experienced similar symptoms --the high heart rate with no edema and the pounding sensation throughout my upper body.  When these episodes started occurring more frequently (Oct. 2003), I went in to see my cardiologist, he suggested electrophysiological testing.  He also did an echo and EKG/stress.  The echo showed very mild prolapse and regurge of the mitral valve--vast improvement from what it was, and the other tests were fairly normal.  My EF is still below average, but I am fully functional and now off all meds.  My cardiologist attributed my symptoms to anxiety.  I can understand your frustration and I will keep my fingers crossed for you.  Let me know what you find out!

[Cleveland Clinic]

phil,

Thanks for the post.

Timing of mitral valve surgery is often a difficult issue.
You didnt mention the extent of the regurgitation, but Im assuming it was moderate to severe since you had a mitral valve repair. Most certainly then, the decrease in your EF is related to the valve repair. With a leaky mitral valve, the heart is unloaded as blood flows out the aorta and through the low pressure circuit back into the atrium and lungs. While the heart may appear to be contracting normally because of the backwards flow, impairment of the heart muscle can occur despite the appearance of the normal EF. When the valve is fixed, the contractile impairment of the heart muscle is evidenced by a decreased EF.  We attempt to fix the valve before this impairment occurs.

with respect to your questions.

What do you make of this pounding?

Its a senstation related to your elevated heart rate. I wouldnt make too much of it.

I understand the drop in Ef from 35 to 20 may be due to repaired valve. But I Never had pounding heart or elevalted rate pre surgery. Was it wise to have surg with 35% EF?

Yes.  It would suggest that the regurgitation was taking a toll on your heart muscle. Further damage would occur if it wasnt done.

Why would Surgery bring about these symptoms?

Given you just had a major heart surgery, you are more aware then ever of your heart and sensations related to your hearts normal fucntion.  We often see alot of people after heart attack have alot of pain that isnt heart related. I suspect it should resolve over time.

Good blood pressure control and rehabilitation are more important then ever for you.

good luck