btrue
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btrue, April 18,  2020  7:14am EST
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Needing strength in recovery

Hello,

My name is Bill, and I have suffered from Mitral Valve Prolapse.  I am a very healthy and active 39 year-old father of two.  I had surgery to repair my Mitral Valve in early November 2019.  My surgery went well, according to my surgeon, but recovery has been much more trying than I was prepared for.  
 

I have been a lifelong athlete.  I work in the cycling industry, and I adhere to a very rigorous exercise regime.  (I biked 1000 miles the month before my surgery.)  I am also a vegetarian, and for good measure, I abstain from alcohol, caffeine, and fun (joking)!

My recovery from MVR has been a much longer and more trying ordeal than I was prepared for.  I elected to have surgery while still, fairly, asymptomatic.  I wanted to go into the procedure in great shape so that I could recover quickly.  To be honest, I was already contending with some very fast folks, even with severe regurgitation, and I hoped getting a tighter seal would make me even quicker....

Now 5 months into my recovery, I am not back to 100%.  My power on the bicycle is 70% of my previous norm, and my heart is working much harder to achieve that.  I am wondering how long it will take me to get to where I was... and beyond.  I have pushed recovery to the limit, as is my way.  I started exercising, as best I could, the very day I was released.  I even stopped rehab because I felt they were not letting me work hard enough.

My cardiologist has suggested that my recovery may have peaks and valleys, but he has admitted to not having worked with a patient so young or fit prior to surgery.  All said, I can't seem to find answers for how long it takes to be able to return to strenuous activity after Mitral Valve Repair.  Am I asking too much?  I have recovered from several life-threatening injuries, and I had to learn to walk again... twice!  I will beat this too, but I wish someone could tell me if this will get better eventually.

Thank you,

Bill

 

edit:  I meant to mention that one huge issue seems to me to be that my resting heart rate is very high post-surgery.  It was between 35-40 bpm prior, and it is now 70-80.  I am very eager to know if anyone can offer some perspective on how long this takes to go back to normal.

  • Birdiecock
    Birdiecock, April 18,  2020  8:22am EST

    I had mine done at age 68 but was in superior condition myself.  I am assuming your heart valve was repaired instead of replaced.  You seem to be typical type A personality.  I had a pretty smooth recovery but still had some issues with irregular heartbeat and low blood pressure.   This lasted for about a year.  

     

    Frankly, after reading your post I could only come to one conclusion.  Slow down.  Your heart was actually stopped!  Your lungs were bypassed.  Mine was for 5 1/2 hours.  The heart and lungs were under siege!   It took me a year to get my heart to the point that I didn't think about it every day.   It varies from person to person.  I'm sure being the athlete you are, that's not what you want to hear. But MVR is unlike any other surgery you will ever have.

     

    You may want to join https://www.heart-valve-surgery.com/ where you should find some younger more athletic folks like yourself.  It's also loaded with useful information.  Best wishes. 

  • btrue
    btrue, April 18,  2020  9:21am EST

    Birdiecock,

    Thank you for your reply!  It has been really tough to find definite information, as people heal in different times and ways.  A year is sounding better than it would have originally.  I foolishly thought I would recover from the repair in 2 weeks....   I am guilty of setting unrealistic expectations from past "experiences".  As you said, I am finding this to be unlike anything I have done before.  (I had multiple ablations more than a decade ago, and a younger me was back to top condition in less than two weeks.)

    Exercise has long been my refuge, and a flaw in my personality makes it hard for me to enjoy unless I am pushing the limits of what I am capable of.  

    I joined the heart-valve-surgery forum shortly after surgery.  I tried posting there, but found very few answers.

    Bill

     

  • AmbassadorMR
    AmbassadorMR, April 18,  2020  9:38am EST

    Bill,

    I'm glad that you reached out here on the support site because you are asking important questions and providing useful insights for many others in the "athletic" heart surgery community.

    Now that the introduction has been made, let me just say that as Birdecock has suggested you need to reassess and recalibrate your recovery expectations. I'm sorry to hear that you are struggling with important aspects of your cardiac recovery process but quite frankly (and this is not intended to be a lecture) dropping out of your prescribed 12-week cardiac rehab program may have set you back in your recovery timeline. I know because I lived this scenario myself in 2012-2013. While I was not as young as you nor an elite athlete, I was a consistent runner and strength trainer for decades prior to my surgery.

    It would be helpful to know if your mitral valve procedure was full sternotomy, minimally invasive or catheter based. Was it a repair or replace as Birdiecock questioned? In any case, the trauma and inflammation that we experience with heart valve surgical procedures is very significant. It affects our entire body and not just the heart itself. Every individual recovers in their own unique way and there is no one size fits all for what is optimal for a particular person. This is why a 3-month cardiac rehab program is so important. It indivdualizes your recovery process to the way YOUR heart is responding to exercise. You may think that it is too slow or non-challenging relative to your pre-op workouts but that is a big mistake to make. Your heart has been traumatized and it needs to heal and recalibrate to the new corrected valve environment and flow in a measured and structured environment. Hence cardiac rehab.

    Here is a useful clinical reference from Mayo Clinic related to athletic patient recovery following heart surgery. It's a lot of information but it may start you down a better path in your recovery journey. And that's another point to make - your recovery is a journey and not a quick detour right back to your immediate pre-op intensity.

    http://www.mnacvpr.org/wp-content/uploads/MNAACVPR-Athletes-in-CR-Final.pdf

    Give this information some thought and do not hesitiate to reach out to me if you believe I can be of any assistance to you in your recovery. That's why we are here and the area of athletic heart recovery is an interest of mine.

    Yours In Heart Health,

    AmbassadorMR

     

  • NanaGwendy
    NanaGwendy, April 18,  2020  11:56am EST

    Hi, Bill. I'm 63 and I had a MV replacement 6 months ago, after a failed repair 10 months ago. I also had a hard time with the pace of cardiac rehab, and I opted for virtual cardiac rehab the second time around. It's a much better fit, because it's tailored for you, rather than putting you in the same box as those folks who didn't exercise or eat in the same way that you have, prior to surgery.

    I'm active, but not nearly as young or active as you are. I've struggled with heart rate, as well as how hard my heart is working during hard exercise. The initial erratic heart rate has slowly come back to a "normal" (prior to surgery) rate during exercise. My resting HR is slowly (small inconsistent changes that trend down) coming down.

    I think it's just going to take longer than you thought. You have the benefit of a repair, rather than a replacement. Keep going, but there's a difference between pushing and pushing to the breaking point. Your heart is still mending and dealing with adhesions and its "new reality."  You'll get there. Congrats on the impressive progress that you've made already. It may help to track your trend lines rather than single data points.

  • btrue
    btrue, April 18,  2020  8:21pm EST

    Thank you for the replies!  My valve was repaired in a minimally-invasive procedure.  I have felt for the last few months that leaving rehab was a mistake.  As mentioned, I was unable to see the benefit as the other patients and staff did not seem like a fit for me.  I am very intrigued by virtual rehabilitation.  I have worked with coaches in the past, and I enjoy following a strict routine.  

    I recovered from 2 fairly incredible orthopedic rehabs, and I was constantly told to push harder than my pain threshold could tolerate.  I did 130 sessions in one year, and my therapist loved breaking screws, plates and mesh.  I think this put an idea in head that the harder you work, the more you get out of everything.  This has been an impossible idea for me to break free from.  I have quite literally exercised myself unconscious.  (My wife drove me to the ER after fainting on our elliptical.)  

    My father passed away too young, and I am mortified by the idea of leaving my wife and children at an early age.  I can see that my fear of not giving everything I have has led me to push myself to a point of even greater jeopardy.  
     

    Thank you again,

    Bill

  • AmbassadorC
    AmbassadorC, April 18,  2020  9:42pm EST

    Btrue, 

    A warm welcome to the support network! You are among fellow heart warriors who have been there, done that and still do that.  Thank you for sharing your concerns re recovery, especially during these trying times. Having said that, I can relate to how you are feeling re progress, reaching milestones, return to every day "normal". These days among CV-19, there is much uncertainty, yet alone being a heart Valve Patient. Im hopeful that the below reference to an earlier post will help you In  Your journey to recovery. Stay healthy ! 
     

     

    Good morning Heart Warriors ❣️

    Recently, I was waiting for my train to pull in to start yet another busy day of life in the big city. It was a mixed bag of weather in the forecast with rain to be expected throughout the day. Yet, somehow the day started out with this beautiful sunrise. Not only did I see the beautiful rays above the clouds but it looked like, far in the distance an outline of a incomplete heart. By the time I got into the city, it was dark as night and torrential down pour. 

    On your road to recovery, do you feel like some days you start out like the sunrise yet only to find a dark storm cloud came over you and rained on your parade? I think back to days like those where I couldn’t wait to go to cardiac rehab to measure my progress, only to find that my heart would start to flutter, get stuck at 180 bpm and I had to be wheeled off to the ER to be cardioverted back to normal sinus rhythm.  For those days that start out like this, I am reminded of a famous poem that I’d like to share with you. 

    Don't Quit
    by
    John Greenleaf Whittier

    When things go wrong as they sometimes will,
    When the road you're trudging seems all up hill,
    When the funds are low and the debts are high
    And you want to smile, but you have to sigh,
    When care is pressing you down a bit,
    Rest if you must, but don't you quit.
    Life is strange with its twists and turns
    As every one of us sometimes learns
    And many a failure comes about
    When he might have won had he stuck it out;
    Don't give up though the pace seems slow—
    You may succeed with another blow.
    Success is failure turned inside out—
    The silver tint of the clouds of doubt,
    And you never can tell just how close you are,
    It may be near when it seems so far;
    So stick to the fight when you're hardest hit—
    It's when things seem worst that you must not quit.

     

    Remember this Heart Warriors when you want to give up. Rest if you must, but don’t ever quit. Keep on fighting with ❤️. You will get there one heartbeat at a time❣️

    Ambassador C

     

  • btrue
    btrue, April 18,  2020  11:12pm EST

    Thank you Ambassador C!  A truly excellent poem.  I feel rather as a past-prime pugilist.  I have been in the ring many times, but this opponent is new, and I am having trouble figuring out his fighting style.  I have taken some pretty good hits to get where I am.  I just can't seem to figure out what round I am in and what's on the scorecards.  I keep trying to land a knockout, and it would seem I need try a little rope-a-dope!  Hopefully I can channel my inner Ali.

    I am grateful for your thoughts.

    Bill

  • AmbassadorC
    AmbassadorC, April 19,  2020  6:47am EST
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    Good morning Bill, 

    Here is another post that may help you sort out those feelings that I too experienced. It’s perfectly normal to feel the way you do as I remember that all too well. Know that every body is different in terms of recovery. For me, I didn’t feel “normal” for about a year as I had several post surgical complications. Having said that, I also encourage you to celebrate the small milestones that you experience along the way. For me, if I thought too far ahead, things would get overwhelming at best. One day at a time, one heartbeat at a time, you will get through this. ❤️ Keep on jumping into the ring. Hope the post below will help. 

    Adapt and Overcome - What is your New Normal?

    Good evening Heart Warriors❣️
    Welcome to our newest members of the community. While this is a repost, I would like to share with you a positive and encouraging perspective, that life does not have to be limited if you are diagnosed with A-Fib, or in my case heart valve disease. 

    Adapt and Overcome - What is your New Normal?

    I recently celebrated my three year anniversary from open heart surgery for a mitral valve repair on June 13th.  In many ways, it feels like a second birthday.  A time to celebrate, a time for reflection and a time to appreciate all the blessings that have been bestowed upon me during this journey.  Yesterday, I completed my "maintenance checkup" and I could not help but pause and reflect upon the many obstacles that I have overcome in my first year of recovery. There were many speed bumps on the road to recovery and I felt as if they were road blocks at times.  I look back and think to myself, how did I get through all of this?  The answer:  To Adapt and Overcome.  

    While it may sound quite simple, it can be quite challenging.  As I reflect upon the beginning of my journey, I had to "adapt" when  life threw me a curve ball and I was told that  it was time to have open heart surgery to repair a leaking valve.  Life doesn't always go as we plan. We have a choice, we can either ignore the issue and hope that it goes away, or adapt and overcome. 

    The best laid plans for my recovery, didn't go as I had thought.  I had prepared, researched and prepared some more, researched and prepared.  I had many lists and checked them twice, even three times.  What was not on my list is what would become my "new normal".  As I hit the various speed bumps upon my road to recovery (fluid around my heart, atrial flutter, irregular heartbeat resulting in 3 cardioversions,  atrial fibrillation and a catheter ablation) within 4 months of open heart surgery, my recovery plan did not allow for flexibility.  I thought I would have this surgery, go through the healing process and be "fixed".  I quickly needed to learn how to "overcome" these obstacles. Swelling, weight gain, rapid heartbeats, restricted diet, bouts of lightheadedness, fatigue and low blood pressure just to name a few, are what became my new "normal" at various times during my recovery. These were tough pills to swallow at first. 

    I am happy to report that the outcome of my "maintenance checkup" yesterday was a positive one.  While my valve has been repaired, I still feel occasional palpitations, and at times lightheadedness but my heart is beating as strong as ever.  My blood pressure tends to run low, but I am alive and kicking.  I am no longer restricted by rapid heartbeats, even though I still get PVC's.  I am able to kick box 3-4 times a week and I keep fighting with heart. My research and checklists have allowed me to pay it forward and help make someone else's journey a little easier.  This has become my "new normal" and I continue to "kick out" heart disease one beat at a time.  

    What is your new normal?  How have you adapted and overcome? 

    To read more about my journey Operation Backward Blood 

    Keep on fighting with heart,

    Christine

  • btrue
    btrue, April 19,  2020  9:02am EST

    Christine,

    I read in your reply that you dealt with bouts of lightheadedness.  May I ask if you experienced this when climbing stairs?  Not rigorously but merely in navigating home/office.  This has Benn one thing for me that I had not gone through prior to surgery, and it is more than a nuisance now.  At times I am close to fainting just walking to take my kids up to bed.  You mentioned that it got better; may I ask how long it took and if it ever went away completely?

    As always, thank you!

    Bill

  • AmbassadorC
    AmbassadorC, April 19,  2020  9:23am EST

    Hi Bill, 

    For me, it took about a good 6 months. I didn't really notice it going up stairs because we have a ranch style house. However, when I returned to exercising full boar I couldn't do burpee exercises. Or, anything that would require an immediate up to down movement. I would most definitely report your lightheaded episodes to your cardio. There could be other issues attributed to your lightheadness. As an example, I had really low blood pressure and on top of things, I had the Attrial flutter. Always best to be updating your medical team. Hope this helps. 

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