Endurance cyclist much worse after robotic mitral valve repair

[Jackiecip]

I’m sorry you’re having these issues. I too am an avid cyclist and had my aortic valve replaced in December 2022 at age 70. For all of 2023 I felt that my cycling was “off”— climbing was a struggle, average speed was down, didn’t feel like doing longer rides. This year I noticed a big improvement—better climbing, higher average speed and longer rides. I did my first century last week since before my surgery and I felt great. I agree with what others have said but I also think that time is needed to see where your new normal is. I’m on track for 4,000 miles this year and I definitely feel better on the bike than I did in the first year following surgery…

Thank you so much morellib! Your post made me so hopeful! Congratulations on your first century since surgery and 4K so far this year! GOALS! This is so helpful because heart surgery is definitely nothing like recovering from musculoskeletal injury. I've had ORIF of the clavicle, rib fractures, knee sliced open to the patellar tendon (all from cycling and the recovery was NOTHING compared to this, it was a piece of cake!
If I have to be more patient and take what my heart/breathing gives me, so be it. That's what's so hard because all of us have different physiology and how fast we recover. I thought when I was okayed at 5 weeks post op to cycle, I'd be back to "normal" or BETTER in 2-3 months. I was doing okay as the months went on but as it starting getting closer to one year (I am at eight months), I was getting a bit freaked out since just no improvement.
I will still follow up with everyone's suggestions but your reply really gives me hope that I may feel that wonderful high on the bike again! Thank you again for sharing this! Best, Jackie

 

[Timmay]

I’m rooting for you!

Push your doctors. Push them hard. Get every test that is possible.

CT study with contrast
Echocardiogram study
Nuclear Stress Test
Maybe even a Transesophogial Echo (aka TEE)
Lung Capacity Test
Blood Tests

Don’t take no for an answer. You deserve better. You know what you’re capable of.

I’m leaning toward what pellicle said about your repair potentially not being 100%. That said, I hope it is! So get some tests to find out.

It’s so very tough to know what you should be capable of … but can’t do. This is especially true if you found a lot of your identity in those activities. I have a little bit of experience with this so I can empathize a bit for sure.

Please keep us updated. Very interested and curious how this works out for you.

 

[3mm]

t’s so very tough to know what you should be capable of … but can’t do. This is especially true if you found a lot of your identity in those activities.

I strongly agree with Timmay. Last Sep 2023 I had a full sternotomy to repair mitral valve and install a mechanical On-X aortic valve. I had had Endocarditis in Dec 2022. 2 days before my open heart surgery, I could begin a 60 minute resistance training session with 80 pushups in about 2.5 minutes with perhaps 2 rests in the up position around 40 and again at 60 repetitions. Now (8 months after surgery) I can start my training with a set of 50 pushups... and then I need to drop to my knees, catch my breath, and shake out my shoulders before I continue. I am improving. In Dec 2023 I could not do a single pushup on my toes. But it takes consistent work to recover.

Based on what I see in various gyms and talking with different people, I suspect that many people who say "I fully recovered" after a few months are not measuring their progress accurately. Which is OK, as long as they can do all of their daily life activities. I want to encourage everyone, and NOT discouage anyone from exercising! But for myself I want those last 30 pushups....

 

[Jackiecip]

I’m rooting for you!

Push your doctors. Push them hard. Get every test that is possible.

CT study with contrast
Echocardiogram study
Nuclear Stress Test
Maybe even a Transesophogial Echo (aka TEE)
Lung Capacity Test
Blood Tests

Don’t take no for an answer. You deserve better. You know what you’re capable of.

I’m leaning toward what pellicle said about your repair potentially not being 100%. That said, I hope it is! So get some tests to find out.

It’s so very tough to know what you should be capable of … but can’t do. This is especially true if you found a lot of your identity in those activities. I have a little bit of experience with this so I can empathize a bit for sure.

Please keep us updated. Very interested and curious how this works out for you.

Thank you so much for your message Timmay! I needed your positive message/energy with great advice. Your description of me is spot on. I tell me husband that I don't even know who I am now. Being a strong cyclist was a huge identity for me and it is totally gone. I loved it so much. Cycling was never a drag. It made me feel alive, like the best therapy. Since I live in So Cal, I can cycle all year long outside. We have the best climbing in Los Angeles County! I just cycle now the best I can so I don't lose all my fitness but it is a struggle, the joy in it is lost trying to pedal and find my breath.
Yes, I think pellicle is probably right since I am so much worse than before the surgery.
I hope you are back to all the activities you love and feeling great!
Thank you sincerely for your kind message. I will definitely keep you all posted on the outcome of my cardiac/pulmonary appointments and request all the tests. Best, Jackie

 

[Jackiecip]

I strongly agree with Timmay. Last Sep 2023 I had a full sternotomy to repair mitral valve and install a mechanical On-X aortic valve. I had had Endocarditis in Dec 2022. 2 days before my open heart surgery, I could begin a 60 minute resistance training session with 80 pushups in about 2.5 minutes with perhaps 2 rests in the up position around 40 and again at 60 repetitions. Now (8 months after surgery) I can start my training with a set of 50 pushups... and then I need to drop to my knees, catch my breath, and shake out my shoulders before I continue. I am improving. In Dec 2023 I could not do a single pushup on my toes. But it takes consistent work to recover.

Based on what I see in various gyms and talking with different people, I suspect that many people who say "I fully recovered" after a few months are not measuring their progress accurately. Which is OK, as long as they can do all of their daily life activities. I want to encourage everyone, and NOT discouage anyone from exercising! But for myself I want those last 30 pushups....

Agree wih you 3mm and Timmay! It's so hard to know our "before surgery fitness" is still in us, somewhere. We worked hard to get to our fitness level and WOW does surgery steal it! I can't imagine having a full sternotomy with the MV repair and additional mechanical On-X aortic valve. My surgery was only robotic mitral valve ring repair and I felt like I was hit by a train those first few days.
Your fitness pre-surgery sounds amazing and that you are getting closer to getting it back at 8 months. I have no doubts you will get get those 30 pushups (and maybe more!)
I have had to swallow my pride and just ride slowly and keep trying to do some hard efforts and see what happens but I have made zero improvement since I started cycling at 5 weeks post op. At first I was buying into "my age", "still early in post op healing" and then I thought my breathing issue was a mental thing, but I am extremely competitive and stubborn and it has nearly killed me to have cyclists pass me as I gasp for air.
You guys get it!
Here's a good one for you, I had one cardiac NP tell me that "you are 60 years old and will not recover like a 20 year old and that I should not be exercising like this because I will ruin my heart. It's not good to exercise like that and I am lucky I have not done more damage. I should not expect to return to how I was and to just enjoy what I can do." (I saw her at a stress test and before the cardiologist at one visit and she said the same thing both times when I told her, "something is wrong, I am a really strong cyclist, I can't breathe, it's been ____ months and no improvement."
Really frustrating!
Thanks again 3mm and keep pushing and pushing up! Best, Jackie

 

[vitdoc]

Your story should have an explanation that is not too hard to find. I bicycle and I know very quickly when my function has deteriorated so I think your evaluation of your abilities is real. So is it valve related? Have you developed functionally significant mitral stenosis? Is there some sort of intrinsic myocardial dysfunction like having a heart attack with a section of poorly performing myocardium? Intrinsic cardiac dysfunction such as a cardiomyopathy.
Most of these questions should be quickly answered by a decent Echo cardiogram along with some ancillary tests like a nuclear scan if needed. A pretty good estimate of the gradient across the mitral valve is easily obtainable. The size of the heart and the motion of the heart walls also can be noted along with a good estimate of your cardiac output. Pulmonary vein pressure can be measured to see if you have pulmonary hypertension. A routine CBC will show any significant anemia. So there should not be this big mystery. Talk to the cardiologist to get these things done if they have not already been done. You should get an answer or at least ruled out a large number of things. Good luck.

 

[oo0My_Valve0oo]

Hello Jackiecip, I hope your solution is as simple as mine turned out to be. I was sort in a less extreme but sort of similar situation. No athlete but managed a physically strenuous job working 55 hour weeks getting by on an average of 3.5 hours sleep.

According to what everyone at the hospital said I was anticipating a full recovery and a boost back to my pre-heart surgery symptom normal. I was able to return to work a few weeks early and immediately jumped back to 11 hour days during a heatwave. I was not fully recovered but I passed tests getting a green light satisfying the company.

A few months later I realized I was getting more and more fatigued. I was unable to manage walking up a grade without stopping to catch my breath. With my sleep pattern all it would take was one day of a couple extra hours sleep and being less active on a weekend to snap back prior to the surgery. Now there was nothing that worked to recover that much. Recovery from an exhaustive task had come like catching my breath with a burst of energy like I had not been depleted earlier. Now it was a slow recovery to a low normal. This went on and on and worsened til I could not walk across a street without stopping to catch my breath.

I described it to the regular doc, the cardiologist and surgeon many times. All of the tests I had done to demonstrate I was ready to return to work showed everything was OK. They only did more EKG’s. Each physician either said everything shows things are fine and to see some other department or the specialists said see the regular. The next year my regular transferred out of state and my cardiologist retired. When the cardiologist retired they said see the reg for my heart and did not assign a new cardiologist. About a year passed not seeing the reg before he transferred because I felt that regular was inadequate and somewhat incompetent. The retired cardiologist was definitely unreliable having blundered a couple of times.

I saw a new regular who listened and made a list to check off and she referred me to a new cardiologist. The new cardiologist was like the new reg and made a list to check out. This was promising. Upon hearing my description of symptoms and what it seemed to be to me the new cardiologist initially said if it was what I thought it was I would feel pain in my legs which I did not feel. He put me on a portable EKG for two weeks. I mailed it in after the two weeks and when a cardiologist looked at the data he called me on a Friday night and said to go the nearest ER.

I received a pacemaker and within an hour experienced the boosted recovery I was told the heart surgery would have after its 3 month recovery period two years earlier. The pacemaker has done a lot for me. It compensated for electrical problems my aortic valve replacement did not address. What I had described to the cardiologist is exactly what had been happening. My heart had not been able to pump the amount of blood my body needed when I experienced the symptoms. It took constant monitoring with the portable EKG to catch the source.

After such so long living with such a poor performing heart I initially had an abundance of energy as my heart was used to working extra hard. It continued to work hard until it adjusted to the assistance from the pacemaker. In the meantime I was getting a boost from both my heart and the pacemaker and felt amazing being able to do so much with very little effort. It was practically immediate gratification. I felt the difference within an hour after the pacemaker implant procedure. I did not need to sleep at all some days. I knew the night before I would be more energized with no sleep than I had been at my pre-heart surgery symptom best.

I was so inspired I probably could have persuaded people to get one when they did not need one. Things have leveled off now a year later with the pacemaker. I am now lower than my pre-heart surgery symptom best and I feel the consequences of my sleep pattern. Considering the sleep pattern is a separate problem with consequences of its own I am still feeling good because of the pacemaker.

Good luck. I hope the symptoms are remedied soon and with a friendly procedure and not something major.

 

[3mm]

I had one cardiac NP tell me that "you are 60 years old and will not recover like a 20 year old and that I should not be exercising like this because I will ruin my heart. It's not good to exercise like that and I am lucky I have not done more damage. I should not expect to return to how I was and to just enjoy what I can do.

A cardiac NP may only work with a few serious athletes each year, so they might not know what is reasonable for you. I do know that my metoprolol (beta blocker) seems to steal about 10 bpm from my maximum heart rate, which limits my peak aerobic performance. I see this when I train intervals striking a heavy bag. However, that is a minor effect which I can manage by pacing myself. (Fortunately the heavy bag doesn't hit back!)

I wonder if there are medical literature studies about the recovery of serious athletes after heart valve surgery?

Thanks again 3mm and keep pushing and pushing up!

Well, you inspired me to try a little harder just now. I just did 60 pushups with a couple rests in the up position. Then I checked on my Kardia Mobile 6L device, which said I was in Atrial Fibrillation. I didn't feel anything bad, just the usual out of breath feeling after an intense burst of activity. It went away after a couple minutes, so I'm fine. Fortunately, I'm on a 2 week Holter monitor, so the Electrophysiologist Cardiologist will see this; maybe it will be useful data for him.

 

[Jackiecip]

Your story should have an explanation that is not too hard to find. I bicycle and I know very quickly when my function has deteriorated so I think your evaluation of your abilities is real. So is it valve related? Have you developed functionally significant mitral stenosis? Is there some sort of intrinsic myocardial dysfunction like having a heart attack with a section of poorly performing myocardium? Intrinsic cardiac dysfunction such as a cardiomyopathy.
Most of these questions should be quickly answered by a decent Echo cardiogram along with some ancillary tests like a nuclear scan if needed. A pretty good estimate of the gradient across the mitral valve is easily obtainable. The size of the heart and the motion of the heart walls also can be noted along with a good estimate of your cardiac output. Pulmonary vein pressure can be measured to see if you have pulmonary hypertension. A routine CBC will show any significant anemia. So there should not be this big mystery. Talk to the cardiologist to get these things done if they have not already been done. You should get an answer or at least ruled out a large number of things. Good luck.

Thanks so much vitdoc! Your heart history is incredible and I'm so happy that you are still cycling! This gives me hope. You definitely must be attuned when something is not feeling right on the bike.
This is very helpful information. I feel very silly complaining about my mitral valve ring gone wrong compared to what you have been through.

I've had 2 stress echocardiograms in the past 2 weeks, back to back and I received phone calls that they are "normal and follow up with your cardiologist and they will discuss more thoroughly". The first one was missing data that the tech did not capture, hence they called me in for a second one.
I can't do the treadmill stress long enough to get the shortness of breath I do on the outdoor bike or running outdoors. It starts so gradually and easy for me, then when they increase the speed and gradient to 18%, I can't run fast enough (holding on to the front bar as they make you do) so I have to end it or I will fall off. Then, they try to transition to the bed to do the echo fast but I typically recover fast, especially if I am not really that short of breath.
I'm not sure if they are capturing what they need.
I see the pulmonologist next week, cardiothoracic surgeon the following week and my cardiologist in mid July (he's so hard to get an appointment, my appointment in June was cancelled by his office for emergency). I think a CBC is definitely a good idea. I've always had great blood values except immediately post op.
My tests may be "normal" but something is definitely not normal since I have made zero improvements on tolerating cycling/running since I was released exercise without restrictions.
Hopefully, I get answers at my appointments. Thank you for your great input! Happy pedaling! Best, Jackie

 

[Jackiecip]

Hello Jackiecip, I hope your solution is as simple as mine turned out to be. I was sort in a less extreme but sort of similar situation. No athlete but managed a physically strenuous job working 55 hour weeks getting by on an average of 3.5 hours sleep.

According to what everyone at the hospital said I was anticipating a full recovery and a boost back to my pre-heart surgery symptom normal. I was able to return to work a few weeks early and immediately jumped back to 11 hour days during a heatwave. I was not fully recovered but I passed tests getting a green light satisfying the company.

A few months later I realized I was getting more and more fatigued. I was unable to manage walking up a grade without stopping to catch my breath. With my sleep pattern all it would take was one day of a couple extra hours sleep and being less active on a weekend to snap back prior to the surgery. Now there was nothing that worked to recover that much. Recovery from an exhaustive task had come like catching my breath with a burst of energy like I had not been depleted earlier. Now it was a slow recovery to a low normal. This went on and on and worsened til I could not walk across a street without stopping to catch my breath.

I described it to the regular doc, the cardiologist and surgeon many times. All of the tests I had done to demonstrate I was ready to return to work showed everything was OK. They only did more EKG’s. Each physician either said everything shows things are fine and to see some other department or the specialists said see the regular. The next year my regular transferred out of state and my cardiologist retired. When the cardiologist retired they said see the reg for my heart and did not assign a new cardiologist. About a year passed not seeing the reg before he transferred because I felt that regular was inadequate and somewhat incompetent. The retired cardiologist was definitely unreliable having blundered a couple of times.

I saw a new regular who listened and made a list to check off and she referred me to a new cardiologist. The new cardiologist was like the new reg and made a list to check out. This was promising. Upon hearing my description of symptoms and what it seemed to be to me the new cardiologist initially said if it was what I thought it was I would feel pain in my legs which I did not feel. He put me on a portable EKG for two weeks. I mailed it in after the two weeks and when a cardiologist looked at the data he called me on a Friday night and said to go the nearest ER.

I received a pacemaker and within an hour experienced the boosted recovery I was told the heart surgery would have after its 3 month recovery period two years earlier. The pacemaker has done a lot for me. It compensated for electrical problems my aortic valve replacement did not address. What I had described to the cardiologist is exactly what had been happening. My heart had not been able to pump the amount of blood my body needed when I experienced the symptoms. It took constant monitoring with the portable EKG to catch the source.

After such so long living with such a poor performing heart I initially had an abundance of energy as my heart was used to working extra hard. It continued to work hard until it adjusted to the assistance from the pacemaker. In the meantime I was getting a boost from both my heart and the pacemaker and felt amazing being able to do so much with very little effort. It was practically immediate gratification. I felt the difference within an hour after the pacemaker implant procedure. I did not need to sleep at all some days. I knew the night before I would be more energized with no sleep than I had been at my pre-heart surgery symptom best.

I was so inspired I probably could have persuaded people to get one when they did not need one. Things have leveled off now a year later with the pacemaker. I am now lower than my pre-heart surgery symptom best and I feel the consequences of my sleep pattern. Considering the sleep pattern is a separate problem with consequences of its own I am still feeling good because of the pacemaker.

Good luck. I hope the symptoms are remedied soon and with a friendly procedure and not something major.

Thank you so much oo0My_Valve0oo! What an incredible heart history you've been through! This would be so terrible to live/work like this for so long after a surgery that was supposed to help, not make it worse. I can't even imagine. You sound like you'd be an amazing endurance athlete for how hard you work! (I don't think you'd have time though with your day job I'm so happy your original doctors moved/retired and you finally found the proper medical care. How amazing!
This makes me hopeful since I just can't imagine continuing to live like this. I felt like I was 30 years old until this surgery, even with the severe mitral regurgitation, I had lots of energy on the bike/running. It was only if I really pushed that I could tell something was wrong/different than normal.
I hope my upcoming appointments can get to the bottom of it. I'm not giving up. Thanks for sharing your inspiring story! I hope you continue doing well with your heart/pacemaker and can figure out a good solution for proper sleep. I can't imagine dealing with sleep issues too. Best, Jackie