Jan 6
Wleishman
Wleishman , Posted on SUPPORT NETWORK Blog

Mitral valve repair with post op issues

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Hello

I live in Canada not far from Toronto.

I have known since my mid-20s that I had Mitral Valve Prolapse (I’m 54 now). It was consider “asymptomatic” and did not affect me (supposedly) over the years. According to my doctor in Feb 2016, an X-ray revealed I had an enlarged heart caused by “serious Mitral Valve Regurgitation”. I was setup with a heart surgeon in the summer of 2016. The surgery to repair the valve was May 29th of 2017. The surgery was complex and took about 8 hrs. It was considered a "success" however, I experiencd post op issues. I gained 30lbs in fluid and went into congestive heart failure. I also developed atrial flutter and went into ventricular tachycardia 5 different times (shocks reset my heart). The estimated 5 day hospital stay turned into 2 months.
I not only lost the 30 lbs of fluid in the hospital but then I lost anothet 30 lbs (mostly mustle mass). My wife and I never expected the post op issues and/or the long hospital stay. 

I also developed vision problems since the surgery and the opthamologist doesn't know if my normal vision will return. Otherwise, he said my eyes are fine.  I also had “mini strokes” at some point during or after the surgery. These likely caused my vision issues.

The “mini strokes” also affected my arms and hands (numbness, shaking)

I went through cardiac rehab in the fall of 2017 but it didn't really rehab me much. After that I have been trying to put on muscle mass and my weight is now 170lbs (I'm 5' 11" so that's where I should be)

One of the other complications after my surgery is a low Ejection Fractin in my heart. Mine is currently about 30% which means I don't have much stamina.
I have to take a lot of pills daily to help control and strengthen my heart.

Before they released my from the hospital they put an ICD in my chest to control my heart pace and/or shock my heart if necessary. Since my release from the hospital in 2017 I've been shocked 5 times (most recently 2 times on Nov 12th which put me back in the hospital from Nov 12th to 16th). The morning of Nov 12th I was doing my work from the home office and then around 10am I started feeling dizzy. I recognized it as the feeling I get just before getting shocked. So I went upstairs and felt dizzier. I blacked out and next thing I know I was laying on my back on the floor. Fortunately I landed on my daughter’s dog's bed. I managed to get up and called my wife. She called 911 and ambulance and fire came.

They took me to emergency department and started monitoring me. My wife was with me by then. While we were sitting there I slumped over but have no memory of what happened for the next few minutes. They told me afterwards I lost my pulse for 3 minutes and they started CPR. Shortly after that the ICD kicked in and reset my heart.

We eventually found out that my ICD threshold was set to go off at 188 beats per minute but during the tachycardia my heart rate was at about 167bpm. Then eventually my heart rate went above the threshold and the ICD shocked me. To me it seemed like I just blinked my eyes and all that stuff happened. 
They admitted me to the hospital to monitor me and figure out what should (could) be done.
They eventually determined I needed a different ICD, so on Nov 16th I had surgery to give me a new ICD. The old model was a 1-wire ICD and they replaced it with a 2-wire model.
The benefit of the 2 wire is that they can dedicate one wire for pacing my heartbeat and the second wire to give the shocks. The 1 wire model can do both but it's not ideal. They also put me back on the drug Amiodarone (which can have some bad side effects)

The problem should have been checked more frequently over the years and maybe it could have been repaired BEFORE my heart got damaged beyond repair. Hindsight is 20/20 right?

My moods go up and down. I get depressed because of the unknown and all the things I can no longer do. It doesn't appear that my ejection fraction has (or will) improve. Before the surgery I was told that I would be as "good as new" after the surgery (ya right).
I also cannot drive until mid-May (6 months from my last shock). This is another thing that depresses me.

I have another appointment on January17th so we shall see what the plan is. I'm not sure if there is any other surgery that improve things. I sent a summary of my condition in December to my surgeon (I last saw him in June 2018)
I'm sorry this is not a happy recovery story but this is what can happen sometimes.
I hope this group can provide feedback, answer questions and provide inspiration. At this point I don't envision improving and/or living very long.


Regards
Wayne 

7 Comments
  • AmbassadorMR
    AmbassadorMR,

    Wayne,

    You have been through so much these past couple of years that feeling emotionally and physically drained is completely understandable. I'm so sorry that you have experienced the complications and ongoing challenges of your mitral valve disease and the repair procedure. We valve patients always hope that the best outcome is what we will experience but for some of us that is just not in the cards we are dealt.

    My own experience (my journey is posted) has not involved life threatening post op complications or the need for an ICD. That being said, I work with patients every week in a local cardiac rehab program and several of the valve patients have had experiences not unlike your own. Each of us handles these surgeries in our own individual manner and it will be very revealing to hear what your physician has to say in your upcoming appointment next week. I truly hope that he/she can give you some new hope for a way forward that can help address your low ejection fraction and proper calibration of your second ICD. There are no simple or quick solutions to damaged hearts that are trying to recover. My sincere hope is that the proper balance of medications and devices can be found to give you a better prognosis. Just know that we here in the valve community send our strength and resolve and just do your best to stay focused on your recovery. Let us know what you find out in your upcoming appointment.

    Sincerely,

    AmbassadorMR

  • AmbassadorR
    AmbassadorR,

    Hi Wayne,

    I am just coming off my second open heart surgery in two and a half years due to an infection. Right after that I had a surgery to drain fluid build up around my right lung. Needless to say all this put me in quite a depression. After the first surgery I thought I was on my way to a long and healthy life without heart issues. I was wrong. But now I am once again on a road to recovery that I hope will be without issues for a long time. 

    The thing is one never really knows. What helped me the first time and this last time was my belief that I would get better. I didn't always have signs indicating this, but I still always believed I would get better. This thinking saved my spirits, even during the worst of times. I exerienced lot of the same issues you had, perhaps for different reasons. I gained a lot of weight the first time and lost a lot of weight the second. I had some vision issues, and numbness in my arm that lasted for months. But I didn't give up hope. You shouldn't either. My issues eventually went away and perhaps yours will too. The important thing, for me, is to believe, as best one can, that things will get better. For me it gave me something to hang on to everyday and something to look forward to. Along the way I would engage in whatever physical activity I was allowed to do. I always asked what could I do. I never waited for them to tell me. Don't lose hope. I know it is easier to say than to do. We are all here to help you along the way so perhaps you can take advantage of this.

    Ray

    AmbassadorR

  • AmbassadorB
    AmbassadorB,

    Wayne,

    You've heard from both Ray and Mark.   Each one of them is a champion scrapper, and each has been through the "grinder". I know these two gents, and their comments and suggestions are worth your best efforts to keep in mind.  I'm an old geezer that lives in Traverse City,Michigan, where it's cold and windy and of course snow on the ground.  I probably should move to Toronto and warm up.

    Your weight at 170 is great.   I am shorter than you and fight to hold my weight at 175.  Regular work outs and exercise is the secret to my status.   I am in a Balance and Stabilization class once a week which challenges me and keeps me working to hang onto stability and normal movements.  Our medicines impact our sense of balance and amiodarone is one of the culprits.   I have kept my cardiologist on the team and have adjusted (reduced) some of the dosage.  It has helped, a little. Depression is a by-product of some of our medication, and again, the cardiologist should be on notice about  your mood swings. You're not alone:  I've experienced the downers, too.  Ray has the right answer; never give up!  Fight it.

     

    Like you, I wear an ICD and have regular visits with the technicians who test and evaluate the equipment.  So far, so good.  The interesting thing about these check ups is when I am told that the device has been activated for short bursts and I wasn't even aware of it.  

    Wayne, you're just barely dry behind the ears!   I'm 88 and am being careful to not get charged with Sexual Assault!  (Ha!)

    Bernie   (Ambassador B)

     

  • Wleishman
    Wleishman,

    Thanks Bernie, Ray and Mark for the feedback and words of wisdom.

    I'm 54 but when I can't do the things I use to do, I feel a lot older. This bothers me since I don't want other people doing what I use to do. I can do many things but get tired when I go for walks or over exert myself! This makes me so angry! I still have flashbacks to the cardiologist saying "after you have the surgery you will be as good as new".

    I worked so hard over the years so that my wife and I can eventually have a nice retirement. Now I worry that I won't make it to retirement or very long into retirement.

    For once I would like to get some good news from the doctors.

    I have been back to work since Sept 2017. This has been good because it takes my mind of my health issues. Fortunately my job is not physically strenuous.

    Well, enough venting for now. 

    Thanks again for the feedback. I will report back in later.

    Regards 

    Wayne

  • BL1970
    BL1970,

    My dear new friend Wayne,

         I too, like many of us, have been through death and back,

    I am 61 years old.

          For me, three open heart sugeries. My first one was in 1968, at age 11. Dinasaurs were extinct by now. Back then, the EKG machines were the size of desks, and the straps to hold the wires were made from pure leather surrounded by hooks that looked like spikey bull-dog collars, (no offense bull dogs,) and before the procedure, a nurse would squirt about a tube full of goop on my chest, and spread it all around. Even though I was only 11, I felt like saying, "hey was it good for you?' and pretend to offer her the complimentary cigarette! The leader chords were an inch thick, like truck cables.

    I was petrified.

     

    Any way, I had two more open heart surgeries, one in '72 and the other in 76. Oh, bty I had an aortic stenosis. The valve they

    put in in 72 turned out to be defective. It was a terrible year for that model, and my heart was ALWAYS like a bounce house: it didnt like it either. In fact other people were dying because of it,

    unfortunately. So I was recalled like a Ford Pinto, and was given a Bjork-Shiley valve. The old valve was very damged, and my mother saved it! WHAT?! I never want to see it.

    In '68 I was in the hospital for 6 weeks. I "died" often and I swear the same cables used for EKG 's were used to start my heart again.

     

    Any way may friend, like Arlo Guthrie says, that's not what I came here to talk about....

    My reason for responding to you is to offer hope and advocacy.

    You mentioned you are going to the doctors tomorrow(your beautiful country uses the same clocks as the lower 48,right?

    Lol. The point is that I have become an advocate insisting that all cardiac patients, big and small, have the RIGHT to ask for counselling, comfort, and what's going on. I NEVER once was offered such services, and for 41 years was scared of every heart beat. Now I finally recevied it, I know how vital it is.

    Heart surgeries, or most anything to do with ones heart is a life changing event, and emotional support, counselling and an a comforting word is as essential as the procedure itself. I do not really mean to be stumping here, but even tho my parents were my heroes, even they never got the counselling they needed.

    Granted, I appreciate that most heart doctors and sugeons focus on saving lives, and I get that, it is all the more reason to include in your check-up the statement- "I would like some counselling services set up please."

    So, sir, I urge you to ask, indeed politely demand these services. Depression, PTSD, and severe anxiety are the norm after surgery, but counselling, therapy, comfort need to be a part of it before, during and afterward.

    Good luck tomorrow my friend. I  believe you will do o.k.

     

    Your new old geezer, 

    Kenneth Levine

     

     

     

  • Wleishman
    Wleishman,

    Thanks Kenneth. You've had quite a "journey" yourself.

    I appreciate the feedback from you and everyone else.

    I had my appointment on Jan 17th (sorry for the delay in providing an update).

    It went well as can be, considering the circumstances. The doctor decided to keep me on 300MG of Amiodarone per day for at least another month. He gave me authorization to travel again (my job involves business travel occasionally). I haven't traveled in 2 years (since before the surgery in May 2017). They also checked my ICD and everything is ok. The technician asked me if I do any exercise since my heart rate history showed the BPM stayed about the same (around 50bpm). I explained I do a daily walk and that I get tired about 3/4 of the way through. He did a tweak to the settings on my device to raise my heart beat if it detected activity. Time will tell if this helps me or not when I start exerting myself. Of course my doctor also agreed with this ICD tweak.

    My doctor asked me how I was feelling. I told him that ONE of my most noticable (physical) issues is when I go for a walk. I typically walk around the block once per day. I know it doesn't sound like much but it's better than nothing. When I get about 3/4 way around the block, my chest gets very constricted and it's hard to breath. If I take a break then I can continue.
    The doctor decided to give me a Holter monitor for 24 hrs and asked me to go for a few walks in that time. Any time I had issues I was told to press a button on the Holter device. I went for 3 separate walks and each time I pressed the button about the same time.
    A week after giving back the Holter monitor, I heard from the nurse practitioner from the doctor's office. She indicated that my heart rate went up to 90bpm when I pressed the button during my walks. She needs to talk to my doctor about the results to determine if they should tweak my ICD some more.
    Since my surgery on May 29th 2017 I have improved a lot however because of damage to my heart muscle I likely won't improve a lot more. All my ECGs after the surgery do not show any improvement in my heart Ejection Fraction.
    The pills I take are supposed to improve my heart function (I guess they are doing something). I've been on pills since after my surgery.
    I'd like to get off the Amiodarone at least since it can have some bad side effects. This doesn't seem possible since I get the Ventricular Tachycardia when I'm not on it.
    I was also told by my doctor that getting a ablation on my heart will likely not help someone like me. I guess for people like me, the ablation is not often successful. Apparently it's not easy for someone with my heart condition versus someone who has the VTs after having a heart attack. It someone has a heart attack, there is a damaged spot on the heart and this is typically the cause of their VTs. This specific damage doesn not exist in someone like me (supposedly), so it's a lot harder to find the spot on the heart that is causing the problem.

    If anyone had VTs after heart valve repair/replacement, and they had an ablation, I'd love to hear how it worked out.

    Regards

    Wayne

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