2nd mitrla valve surgery in 2 years ... My sad story

[charbelnjeim]

hello everyone hru ,,, im here to share my story and would like to state that its really nice to have found this forum..
My name is charbel 2 years and a couple of months i was a young healthy athletic Lebanese guy who plays soccer once a week goes to the gym twice and does all sort of activities without restrictions . Anyway one day i suddenly collapsed and was diagnosed with severe mitral regurgitation with enlarged left ventricular so the doctor recommended mitral valve repair and i did the surgery two weeks later because i became extremly anxious and was suffering from anxiety disorder and panic attacks. this was in NOVEMBER 2013 .
AFTER THE SURGERY WAS DONE I WAS TOLD IN THE HOSPITAL THAT EVERYTHING WAS GREAT AND THAT SOON AND GRADUALLY ILL RETURN TO BETTER THAN I WAS .
but the truth was i started suffering from the next week my heart rate was unstable ,i had ORTHOSTATIC HYPOTENTION, NO TOLERENCE TO THE BETA BLOCKERS ... FOR MONTHS I BATTLED WITH RESTING HEART RATE ABOVE 100 THAT WOULD JUMP TO 150 160 WITH A SIMPLE STAIRS CLIMB AND THE BETA BLOCKERS COULDNT DO ANYTHING EXCEPT MAKE THE PVCS LESS AND MAKE ME MORE DIZZY ...
I BATTLED AND FOUGHT UNTIL JUNE WHEN MY HEART RATE STABLILIZED AT 83 WHILE AT REST AND THE PVCS BECAME MUCH LESS FREQUENT ,,, SINCE THEN I WAS TRYING TO LIVE A NORMAL LIVE BUT I JUST COULDNT RUN OR DI CARDIO BECAUSE MY HEART RATE WOULD JUMP TO 150 160 FAST .... I TOOK ZOLOFT BETA BLOCKER AND LOW DOSE FOR A WHILE AND ALL OF THESE THINGS WERE RECOMMENDED BY CARDIOLOGISTS IN MY COUNTRY BY THE WAY ... THEY ALL SAID IT WAS DEPRESSION I FORCED MY SELF INTO BELIEVING SO...
LAST YEAR I WAS BACK AT GYMS WORKING TWO JOBS AND RIDING MY MOTORCYCLE AS IF MY LIFE WAS THE BEST THAT WAS 2015 ... DURING THIS PERIOD I WAS HAVING INTERMITTENT DIZZY SPELLS ONCE EVERY MONTH OR 2 I SAID IT WAS ANXIETY AND PUSHED EVEN THOUGH I WAS GETTING TIRED AT THE GYM FAST I PUSHED EVEN THOUGH MY HEART WOULD RACE WHILE WORKING I PUSHED ... THE ONE YEAR ECHO CAME OUT FINE , THE DOC SAID U MAY HAVE INAPPROPRIATE SINUS TACHYCARDIA TAKE IVABRADINE (PROCORALAN) . I DIDNT I WANTED TO TRAIN MYSELF BACK NATURALLY ,,, IN THE MIDDLE OF SUMMER I HAD A DIZZY SPELL THAT WAS BIGGER THAN USUAL I ASKED WHY? THEN FORGOT AND CONTINUED .

SEPTEMBER 9 2015 : I HAVE A MOTORCYCLE ACCIDENT I BROKE MY SHOULDER AND HAD SEVERAL INJURIES THE NEXT DAy i had shoulder surgery and a prothesis was installed a few days later a major dizzy spell .
OCTOBER 6 2015 : IM AT WORK DRINKING COFFEE I STAND UP TO WALK AND THEN SUDDENLY BOOM PALPITATIONS DIZZY SPELL AND TACHYCARDIA FOR ABOUT 1 MINUTE .

IT WAS THEN THAT I DECIDED TO PUT EVERYTHING ASIDE AND TAKE MATTERS INTO MY OWN HAND SO I DO A RESEARCH , I FIND AN EP DOCTOR IN THE AMERICAN UNIVERSITY OF BEIRUT AND START TESTS EP STUDY WAS NEGATIVE HOLTER SHOWED 2 PVCS AND 5 PACS ONLY WITH MORE THAN 50 TACHY SINUS EPISODES PER DAY 120+
FINALLY I REQUEST A STRESS ECHO AND BOOOOOOOOOOWWWW THE TRANSMITERAL GRADIENT IS 7 AT 94 BPM
AT 7 MIN EXERCISE IM 183 BPM I TAKE THE ECHO AND THE TRANSMITERAL GRADIENT IS ..........19!!!!!!! AT 123BPM

FEBRUARY 1 2016 "KNOW THE TRUTH AND THE TRUTH SHALL SET U FREE" : FOR ME THE TRUTH WAS CRUEL THE DOC AT THE AMERICAN UNIVERSITY SAID ILL PUT U ON BETA BLOCKER AND THEN UR SET FOR A REPLACEMENT YEARS FROM NOW BUT U SHOULD DO NO SORT OF EFFORT

IM NOT CONVINCED WITH THIS SOLUTION AND FOR THE PAST TWO WEEKS I FIND THE FOLLOWING THE OPERATION WASNT A SUCCESS PANNUS FORMED IN MY HEART THE RING THE SURGICAL TECHNIQUE AND OF COURSE MY BODY ARE THE CAUSE NOW IF THE PANNUS KEEPS PROGRESSING ILL HAVE PULMONARY HYPERTENSION RIGHT VENTRICULAR FAILURE .... (I ALREADY HAVE DIASTOLIC DYSFUNCTION THAT WASNT HERE UNTIL THIS YEAR )

SO MANY QUESTIONS TO ASK AND I DONT KNOW IF SOMEONE HERE HAS THE ANSWERS BUT I HOPE U GUYS CAN AT LEAST HELP : FIRST WHAT SHOULD I DO IM SO AFRAID OF GOING FOR A SECOND SURGERY BUT MORE AFRAID TO LIVE AS I AM LIVING RIGHT NOW ?
second question if i take surgery what are the risks and how do i minimize them ?
third question why does my heart rate jump so fast is it the pannus or simply autonomic dysfunction and what caused the autonomic dysfunction ? is it a mix of both ?
finally if i go for surgery is it true that the ON X MITRAL MECHANICAL VALVE WILL NOT SEE ANY PANNUS FORMATION ?

 

[MethodAir]

You have my sympathies, man. That is one hell of a tough ride. It's beyond my scope of understanding, (and sorry to state the obvious), but it would appear you need answers and a plan moving forward. There are others here who have faced multiple surgeries and they may be better equipped to help.

 

[JulienDu]

Man you are going through hell. Same thing I am not equipped to help and my experience can not be compared to yours. I have had 2 surgeries but not so close together like yours would be. I am sure experienced people will come to your help. As for the Onyx, I do not have it but it is true that she is the only Valve on the market designed to prevent or at least slow any Pannus growth. Good luck man, keep being brave.

 

[charbelnjeim]

its ok man i know my case is somehow rare ... even though im sad because basically i didn t have any major problem before my first surgery in fact when i was a teenager i was diagnosed with mitral prolapse or but the idiot doctor back then said it was very common and didnt even ask for yearly echos ... the timing of my first surgery was also very wrong because i could be treated with medications as well .... i think blaming others wont change anything anyway but i also know that i was nothing but a teenager and a young adult who has no idea about heart disease or any other disease so its not my fault either all i wish is for people to understand that doctors are simply humans they are not right all the time some are great some are idiots others are cheap merchants who want $$$$ never trust someone with ur life unless he can prove hes worth it
as for me ,to find a way out of this mess or maybe just peace and to suffer no more is all i really request now that im a 28 years old guy who lives the life of a 90 years old man

 

[rakesh1167]

Have you taken multiple opinions? What do other doctors suggest? Onx is know to prevent pannus growth due to its structure. Risk of 2nd surgery is same as 1st one. Don't worry you will be fine. I didn't even know what a heart valve is 3 years back, now waiting for valve replacement in few days.

 

[pellicle]

Hi

... anyway but i also know that i was nothing but a teenager and a young adult who has no idea about heart disease or any other disease so its not my fault either all i wish is for people to understand that doctors are simply humans they are not right all the time some are great some are idiots others are cheap merchants who want $$$$ never trust someone with ur life unless he can prove hes worth it
as for me ,to find a way out of this mess or maybe just peace and to suffer no more is all i really request now that im a 28 years old guy who lives the life of a 90 years old man

I"m sorry to hear you're having a tough time. I found your above post difficult reading with the lack of paragraphs, the writing style and the excessive use of CAPITALISATION (also denoted on the internet as yelling)

It seems to me from a quick glance you are needing another valve surgery. I can say that if that is the case (needing another surgery) and you don't do it, you may as well get a gun and shoot yourself now as it will be quicker.

as you are 28 and not a child I'll say pull yourself together and think rationally.

Many of us (me for instance) have had multiple surgeries. Having another surgery is no picnic but it will save your life and return you to health. Look at my profile page and you'll see my history.

I caution you to be brutally rational in your analysis and not emotional. Consider carefully your decisions and consider carefully a mechanical mitral valve.

The negatives of life on warfarin are overblown and if you take the choice of a tissue prosthetic you face instead of the warfarin the certainty of more surgeries. This is a conversation you can have here and with us.

What we can't help you with is panic and overt sensational expressions of emotion. We can just react to those.

PM me if you want a conversation, I'm happy to give you the perspectives I have of a lifetime of living with a valve issue. Or just google my posts here and see my opinions there. Perhaps hearing them may be different, because then I can tune what I say to your situation.

Here is a start on my blog

Best Wishes

 

[charbelnjeim]

I read ur blog and thank u man ... I dont fear a second surgery to be honest what I fear is a worst quality of life after it as mine after the first one is bad enough ... I dont understand why my heart jumps so fast since that surgery to the point that I cant even take the stairs now .
I also fear pannus comeback after the op I it was successful what I really want is to hear that after half a century of heart surgery someone can explain to.me whay happened and why did my valbe repair that was supposed to be the best choice turned out into a nightmare and what kind of replacement should I do to end this nightmare because if this can be done ill do the operarion today without any regrets

 

[dornole]

Short answer: A mechanical valve replacement has the best chance of being a long-term valve solution.

But, right now valve replacement is not an option for you right? Doc said years from now. Unless you find a new doc. I haven't had a stress echo done but I also have mitral regurgitation, and my gradient is 12 mmHg at rest (65 heart rate) which is getting closer to surgery but not there. So for yours to be just 7 at a 94 heart rate (and of course higher when under heavy stress) seems pretty good to me. They have a set of criteria they use to know when to operate based on gradient and several other factors with ventricle enlargement being the biggie, and it looks like you are not there yet. You’re right that if your mitral valve deteriorates over time you will eventually get pulmonary hypertension. I had this and believe me YOU WILL KNOW. I started coughing up blood and dry-coughed all night if I tried to lie down. But that won’t happen to you because you know you have a heart problem (I didn’t) and will get followed with echos every six months or year to check your valve.

The tachycardia you are experiencing seems like it is unrelated to the valve. It sounds like the doc is saying that is not treatable and you have to limit your activity. I wouldn't be happy with that either and you can seek another opinion. Especially if you literally can't take the stairs since surgery. . . . But I'm confused because you also said you went to the gym throughout 2015. So if you are giving your docs that same kind of contradictory info they are not going to be able to assess your symptoms. Pellicle is right, you need to calm it down and be very clear with your care team about the exact symptoms you have or they are not going to take you seriously or be able to give you the right options.

Why did this happen? Because sh*t happens. It's the human condition and while I would like bad things not to happen to me, that's not how being human works. All we can do is play the hand we've been dealt and try to help other people along the way. That is the only tiny benefit of suffering, to hopefully help someone else. I didn’t have to have anything done till age 34 and have been fortunate to get a transcatheter repair but there are plenty of others on the forum who have been having OHS since they were tiny scared kids. It’s not a great club to be in but you have plenty of company, and those who don’t have heart problems have their own burdens to bear.

I hope some of this helps. I really hope you can find peace with this and gain a full understanding of what docs can and can’t do for you and the decisions you have to make.

 

[epstns]

Hi, charbel,

I'm glad pellicle has been able to respond to some of your concerns. Please read his response carefully, as he is one of the most analytical and realistic folks I've met here. He speaks truth, whether we want to hear it or not.

I understand what your mind is trying to do to you. Psychologists here in The States (and I am NOT a psychologist) call this "over-exaggeration." It occurs when a person considers each possible decision and chooses to expect the worst possible outcome for each successive decision or event. You have to get control of yourself and stop doing this, instead thinking of "What is the range of possible outcomes, and which is the most likely." In doing this, as pellicle advises, be honest with yourself and you will probably find that the likely outcome is somewhere between the best and worst. Expect the likely, but be aware of the extremes and maybe think through what you would do if any of the extremes take place.

You've had a pretty bad run of luck. I know how you feel in not really being symptomatic, but having surgery anyway, then having all sorts of problems afterward. My situation was/is different, but let me tell you that the outcome of my valve replacement was not what I expected. (I expected the valve, but not the bypass, the pacemaker and the box of meds I take to keep it all under control.) My opinion, though, is that you are still on your heart journey - it is by no means over for you. I would get a second opinion regarding when to consider surgery. A different surgeon may feel that it is better to have the surgery sooner rather than later to avoid possible future damage to your heart. If you find someone who feels this way, stay with them.

I doubt that a second surgery will leave you in a worse situation than you find yourself in now. Especially consider that your next surgeon will have as his/her "marching orders" to resolve and remedy the issues you now face. If you feel that your life is not going well now, a new valve to replace the failing repair is really unlikely to make it worse.

Also, when it comes to anticoagulation therapy (warfarin, etc.), again listen to pellicle, and also to Dick0236. Both of them have extensive experience with warfarin, and trust me, neither of them lead sheltered lives. They just get on with it, and are doing just fine.

Hang in there and try to keep your emotions in check. I know, in the dark of night when nobody else is around to pull us back to reality we often find ourselves going off our mental rails. It takes great mental strength to bring things back under control and find peace and calm with what you need to do. When your thoughts are swirling around your head, do not make any important decisions. Wait a bit until you are back under control, then start to develop your plan. There is a path that leads to the life you want to lead. All you have to do is find it.

 

[Duffey]

My heart rate was also very high post op and frankly, almost 13 years later, it remains high even at rest. I did try the medication route but the side effects were more unacceptable to me than the high heart rate. A former VR member told of his experience with the same rate problem and what he did to bring it down. I followed what he did, and although it didn't completely solve the elevated heart rate, it did help. Basically I started walking on a treadmill, monitoring my HR, five times a week and gradually increased the rate and incline. It took about six months to see real improvement, but it did. Of course my valve was working properly; if yours isn't, I would be very careful with any exercise program. I know you want your old life style back, we all do, but it doesn't always happen. If you take control of what you can, and let the rest go, I think you will feel less like a victim. You have a long life ahead; you will get past this.

 

[charbelnjeim]

Thank a lot all of you guys really I hope one day ill be the one giving advice here because its like breathing life into a dying soul and thats something ... I know that the road ahead of me is hard and difficult but I also know that im going for the challenge and im giving it all I have .
NOW ILL START RESEARCHING THE ISSUE AND SOON ILL POST A SET OF FINDINGS AND HOPE U GUYS ARE WILLING TO HELP ME GO FURTHER

 

[charbelnjeim]

Thank a lot all of you guys really I hope one day ill be the one giving advice here because its like breathing life into a dying soul and thats something ... I know that the road ahead of me is hard and difficult but I also know that im going for the challenge and im giving it all I have .
NOW ILL START RESEARCHING THE ISSUE AND SOON ILL POST A SET OF FINDINGS AND HOPE U GUYS ARE WILLING TO HELP ME GO FURTHER

 

[pellicle]

...
now I'll start researching the issue and soon ill post a set of findings and hope u guys are willing to help me go further

for my own part I'm always willing to help another valver. I've been though many things myself. Sometimes with people around me , sometimes on my own. I understand it feels challenging.

Don't give in to fears and anxieties as it will really only make things worse.

We can't change what happens, but we can be here to assist in putting your confidence on an even keel.

Best Wishes

 

[charbelnjeim]

Hi everyone ... today I went to see another doctor here in lebanon and its said that this one is good so anyway I showed him my tests results and he said I was very fine and everything I feel is just psychological ... he said a mean mitral gradient of 7 at rest and 19 at exercise was normal folowing valve annuplasty and he even said that a stress echo after valve repair he hasnt heard of this ...
As for me now im really confused I mean I know what I feel and its surely not anxiety 2 and a half years plus im getting more and more tired even more than when I did the surgery so guys what do u think what doctor is right who should I trust and continue with the one that said I need another surgery or this one?

 

[pellicle]

Hi

...
As for me now im really confused I mean I know what I feel and its surely not anxiety 2 and a half years plus im getting more and more tired even more than when I did the surgery so guys what do u think what doctor is right who should I trust and continue with the one that said I need another surgery or this one?

as always, if in doubt seek another opinion. Just don't be so eager to dismiss the opinion as being correct.

Keep an open mind and consider that it may well be fitness lagging and rising anxiety.

But like I said ... seek an opinion and seek one from someone who you have some faith in.