Hello everybody! Does anybody know of any cardiologists who specialize in SPORTS CARDIOLOGY in Southern California (Los Angeles County, Orange County, San Diego ...Read more
Hello everybody! Does anybody know of any cardiologists who specialize in SPORTS CARDIOLOGY in Southern California (Los Angeles County, Orange County, San Diego County, etc)? Thanks!
Just wanted to share with you that last week I celebrated the second anniversary of my robotics mitral valve repair by running the legendary Boston... Read more
Just wanted to share with you that last week I celebrated the second anniversary of my robotics mitral valve repair by running the legendary Boston Marathon (26.2 miles)! This was my first marathon since my surgery. I feel fantastic!! I'm 59 years old and running 5 miles almost everyday (I was a marathon runner before the surgery). With Boston I completed the Six Star World Marathon Majors. The other five are New York, Tokyo, Chicago, Berlin and London, which I had run them from 2016 to 2019. I'm planning to continue running marathons for the rest of my life!!
Today 4/19/22 marks the first anniversary of my robotics mitral valve repair. My surgery went well, but I had several complications during the recovery... Read more
Today 4/19/22 marks the first anniversary of my robotics mitral valve repair. My surgery went well, but I had several complications during the recovery months which sent me back to the ER a couple of times (afib episodes, anaphylaxis caused by a medicine, pleurisy, etc). Today I can say I'm 100% recovered. I'm 58 years old and running 5 miles almost everyday (I was a marathon runner before the surgery). I'm planning to run my next marathon (26.2 miles) in the next few months. This last year has been for me a transformative experience spiritually, mentally, physically and emotionally. I'm definitely not the same person. I have learned a lot about myself, other people, life priorities and, of course, the human body.
Susan Lynn Happy Anniversary, Dylan! The first year is definitely an interesting experience. Best of luck ... Read more
Susan Lynn Happy Anniversary, Dylan! The first year is definitely an interesting experience. Best of luck with your marathon!
My surgeon just said that those with MV repair need to take one Aspirin 81mg a day for the rest of their lives. If you had this surgery, did you get the same ...Read more
My surgeon just said that those with MV repair need to take one Aspirin 81mg a day for the rest of their lives. If you had this surgery, did you get the same instruction from your surgeon or cardiologist?
Ginny Turner I was given this same advice from my surgeon after my mitral and tricuspid repairs. Adam addressed th ... Read more
Ginny Turner I was given this same advice from my surgeon after my mitral and tricuspid repairs. Adam addressed this in a question on the subject in the February 2022 question below. The reason for the recommended low dose aspirin after a mitral valve repair is because the ring placed around the annulus can develop a clot, though very rare.
Learn important facts about the use of Baby Aspirin for patients who have undergone heart surgery for valve disease and aortic aneurysms from Dr. Marc Gerdisch
Rose Madura Last year my cardiologist reduced mine to once every other day because on occasion, I take extra str ... Read more
Rose Madura Last year my cardiologist reduced mine to once every other day because on occasion, I take extra strength ibuprofen and time didn't want to risk upsetting my stomach. To me it is no big deal.
Thomas Brusstar My cardiologist still has me on 81 mg per day, just because of that small risk of a clot related to t ... Read more
Thomas Brusstar My cardiologist still has me on 81 mg per day, just because of that small risk of a clot related to that implanted annular ring around my mitral valve. For people without implanted devices, they've decided the risk of gastrointestinal bleeding risk is greater than the prophylactic benefit of preventing clotting. But for people with that implanted ring, aspirin is still on. People with artificial valves usually have more serious anticoagulants. I don't know about people with implanted biological valves. I assume if a patient has some other bleeding risk, like develops low platelets from some other unrelated condition like leukemia, then they alter the low-dose aspirin recommendation.
Dylan Kempers Thank you Ginny, Rose and Thomas for your great responses!! This is very valuable to me!! Do you know ... Read more
Dylan Kempers Thank you Ginny, Rose and Thomas for your great responses!! This is very valuable to me!! Do you know if taking Aspirin 81mg per day causes significant external bleeding in cases like accidents, skin cuts, etc?
I’m a 57-year-old marathon runner and consider myself an active person. Never smoked, no drinking, no recreational drugs ever. I had robotics MV repair a ...Read more
I’m a 57-year-old marathon runner and consider myself an active person. Never smoked, no drinking, no recreational drugs ever. I had robotics MV repair a little more than 3 months ago (robotics means accessing your body on your right chest). However, I’ve experienced (and still am) several ups and downs during my recovery. I’m not working right now, so I can dedicate myself 100% to my recovery and I don’t have to stress out with work obligations.
Here’s the story: I was discharged from hospital after 6 days, but had to return the same day because I developed Afib as result of the surgery. They put me on Amiodorne for the Afib. I was discharged 2 days later. A month after surgery I started my cardiac rehab. Everything went well for about 2 weeks, until the day I started doing some light weights (6 lbs total). That day started having acute muscle skeletal pain on my back and on my left side of my torso. The pain would move around my body. My energy level went to the floor. I had a feverish kind of state, but no fever and no appetite. The muscle pain disappeared suddenly 4 days later, when I had ANAPHYLAXIS, a dangerous allergic reaction caused apparently by the Amiodorone. I stopped taking Amio and the anaphylaxis went away immediately. So I resumed my cardiac rehab. Two months after the anaphylaxis episode (i.e., about 3 months and half after surgery), after I started a new weights exercise (10 lbs total) at cardiac rehab, I started having AGAIN the same kind of acute muscle skeletal pain on my back and on my left side of my torso that I had before. AGAIN, I had a feverish kind of state without having a fever, no energy, and no appetite. And AGAIN, I had an allergic reaction in my body (luckily, not anaphylaxis this time), which I managed to stop immediately with medicines. The difference is that, this time, the allergic reaction disappeared but the muscle skeletal pain and the low energy state continues, 8 days after this new episode started. This time though, on top of all this, my resting HR went really up (max 104) when it was around 73 before this episode. I’ve been having moments of tachycardia, missing beats and heart acceleration, which hadn't happened for almost 4 months, since I was discharged from the hospital after my Afib episode. Currently, my resting HR went down after I increased the betablocker dose.
(Of course, all events told here included doctors, ERs, allergists, blood tests, skin tests, etc. I didn’t mention any of them to simplify the narration).
My questions for you are:
1) Have you experienced any similar issues so long after your surgery (two, three, or more months)? What explanation did the doctors give you?
2) If so, have you experienced them more than one time, like me? What explanation did the doctors give you for having a repeated episode?
3) Regardless whether they happened more than one time or not, have you experienced issues that seem unrelated, one after the other (like muscle pain, then allergic reaction)?
4) Have you experienced moments of tachycardia, missing beats and/or heart acceleration 4 months or more after your surgery, without having changed any of your medicines?
Any responses from those who had surgery at least 4 months ago or more (could be years ago) will be greatly appreciated. If you need more details from me before responding, please do not hesitate to ask me any questions. I apologize for the long message. I tried to make it as short as possible. Thank you!
Hi Dylan, I guess I am the least person you need answering your questions. Most of my major symptoms ... Read more
Hi Dylan, I guess I am the least person you need answering your questions. Most of my major symptoms after my surgery (November 2019) happened shortly after discharge. I do get some mild things but nothing major. I didn’t do Cardiac Rehab because of COVID. Have you consulted with your surgeon team or your PCP? My PCP was awesome and kept good tabs on me. I was not as health conscious as you are and I’m really sorry you are going through all of this in your recovery and do hope you find relief for all of them. I will pray for you. Be well and God bless you.
Rita Savelis I feel for you Dylan because post OHS can be very difficult for those who are athletic and in great s ... Read more
Rita Savelis I feel for you Dylan because post OHS can be very difficult for those who are athletic and in great shape. Recovery can still be long with various side effects and after effects and things that can't be explained. I had OHS 6 years ago (2 mechanical valves) and still have moments of tachycardia, heart acceleration, missing beats. These came and went with no real explanation. When I stopped betablockers (those meds are no fun), my heart rate went up. It's still high. I'm sorry about all that you've been through. It sounds like you are doing all that you can and asking y our doctors for information. Alas, there is a lot that can't really be explained. Things come and go, and hopefully they go and don't come back. OHS is a big deal and ones heart can take a long time to mend. This can be harder to process for those who are/were in great shape. One wants to get back to "normal" but normal might have changed. Wishing you answers to your questions. Take care.
Rose Madura I'm sorry you are having difficulties. It's not easy. I had issues with Afib and Aflutter for abou ... Read more
Rose Madura I'm sorry you are having difficulties. It's not easy. I had issues with Afib and Aflutter for about 6 weeks after surgery. Was readmitted 4 times. Had a 2nd surgery to remove fluid build up around my heart. Also had a pleural effusion. Not as active as you. Amiodadrone was a horrible drug and I got to the point where I refused it at the hospital. Everything finally settled down. It was all due to my body reacting to the surgery. Inflammation was a big issue. Your body had been through a lot even with minimally invasive surgery. Praying you turn that corner soon. I feel for you.
Susan Lynn Dylan - I can only speak to #4. I had an easy and uneventful recovery from minimally invasive mv sur ... Read more
Susan Lynn Dylan - I can only speak to #4. I had an easy and uneventful recovery from minimally invasive mv surgery, but I was tired for a long time. I even asked my cardiologist for a stress test a year and a half after surgery because I still felt I was too wiped out/SOB with exertion, but it turned out to be normal. Last year, almost three years after surgery, I was diagnosed with premature atrial contractions (PACs), a few episodes of tachycardia and elevated blood pressure. After being off all medication since 2018, I am now on 100 mgs of extended release metoprolol and 2.5 mg of lisinopril. I'm headed back for a follow-up appointment in three weeks because I'm still having PACs and my BP is intermittently high. I, too, would love to know what happened., but I may never get a definitive answer.
You absolutely should continue to communicate with your doctor, but, remember 4 months post-op is still early into recovery. Most estimates I've heard/read indicate that it takes a full year for your heart to heal. Please keep us posted on your progress.
E Taub My first thought when I read your post is that maybe you are taking a statin and they can sometimes c ... Read more
E Taub My first thought when I read your post is that maybe you are taking a statin and they can sometimes cause muscle pain. I take crestor (rosuvastatin), and that was one of the warnings. My doctor has me do bloodwork every 3-6 months to make sure I don't have any kidney issues with the crestor but he also asks me about muscle pain. Here is what it says on google re: crestor "Tell your doctor right away if: You have unexplained muscle pain, tenderness, or weakness, especially if you have a fever or feel more tired than usual, while you take CRESTOR." Let me know what happens. Thinking of you and hope to run into you at cardiac rehab - I'm now at Tarzana too!
Dylan Kempers Hi Ana, Rita, Rose, Susan and Elisa. Thank you so much for your responses! I appreciate the time and ... Read more
Dylan Kempers Hi Ana, Rita, Rose, Susan and Elisa. Thank you so much for your responses! I appreciate the time and effort you took in writing them. I also feel for you for the hurdles that each one of you had to and/or are still going through. Even though there might be similarities, the more I traverse my own post surgery story, the more I realize that each journey is definitely very unique. Thank you again!
Dylan Kempers Elisa, I'm not taking any statins. Talking to a Nurse Practitioner from my cardiologist's team today, ... Read more
Dylan Kempers Elisa, I'm not taking any statins. Talking to a Nurse Practitioner from my cardiologist's team today, I learned that the muscle skeletal pain may actually be something called pleuritic pain, which is an inflammation caused during surgery when they had to cut the lining around the lungs to put you in the bypass machine.
Mike Dotson Hi Dylan, I had my surgery in March 2021 and have been taking Amiodorone ever since. I had 3 episode ... Read more
Mike Dotson Hi Dylan, I had my surgery in March 2021 and have been taking Amiodorone ever since. I had 3 episodes of tachycardia and Afib in the 2 months prior to my surgery (AVR with On-X). Fortunately I’ve not had another episode since surgery and have returned to all normal and desired activities. Since my recovery has been no eventful I don’t have much of anything helpful to add but just wanted you to know that I’m sorry you are having all these issues. It must be incredibly frustrating. Continue to work with your medical team. Best of luck getting back on the path to your next marathon.
Dylan Kempers Mike, thanks for your kind words and happy to know that you're thriving! Apologies for my ignorance ( ... Read more
Dylan Kempers Mike, thanks for your kind words and happy to know that you're thriving! Apologies for my ignorance (I know nothing about aortic valves), but your AVR was via transcatheter, or was it OHS with cardio-pulmonary bypass machine?
Mike Dotson I had a minimally invasive procedure that did require me to be on a bypass machine for a short while. ... Read more
Mike Dotson I had a minimally invasive procedure that did require me to be on a bypass machine for a short while. When I first read about what was involved (stopping my heart!), I was more than a little nervous. What helped me process this was to watch a few "day in the life of a cardiac surgeon" videos on YouTube. From these I could see how utterly routine most of these procedures are for a cardiac surgical team. I was still super nervous leading up to my surgery, but I took some comfort in seeing that what was the scariest day of my life for me was just another day at the office for them.
Dylan Kempers Mike, the reason I asked was because I was wondering if your rapid recovery had to do with the fact t ... Read more
Dylan Kempers Mike, the reason I asked was because I was wondering if your rapid recovery had to do with the fact that you didn't go on the bypass machine. Since you actually did, my reasoning is wrong. Talking about fears pre-op, when I found out that they would be putting a catheter in my penis I almost fainted! LOL Then, I realized is wasn't that bad.
Mike Dotson Yeah, then there’s the catheter LOL. Even now the very idea of it makes me cringe. If it’s any ... Read more
Mike Dotson Yeah, then there’s the catheter LOL. Even now the very idea of it makes me cringe. If it’s any consolation, I was so out of it and loaded up with meds, I really didn’t notice it before it was time to come out. I’m crossing my legs as I type 😝
Tracy Fallu Hi Dylan,
I am sorry you’re recovery has been painful and with hurdles to overcome. I too am a mar ... Read more
Tracy Fallu Hi Dylan,
I am sorry you’re recovery has been painful and with hurdles to overcome. I too am a marathon runner and consider myself active. At 47 years old, I had unplanned mitral valve repair. I had many setbacks that surprised the surgeon/cardiologist. In fact, about 3 months out when I still had not started cardiac rehab, I wondered if I’d ever feel better. The advice I would give you is to be open to all advice your medical team offers and know that one day you will begin to feel better and get back to the active lifestyle you’d like to enjoy. I do have to say my running pace has decreased and over time I I was okay with the new normal.
Richard Munson Anyone out there that enjoyed the catheter removal must have been drugged. They lied and told me i wo ... Read more
Richard Munson Anyone out there that enjoyed the catheter removal must have been drugged. They lied and told me i would not feel it. Easy to say when you are the puller, not the pullee.
Dylan Kempers Hi Tracy, Thanks for your advice. I am happy for you that you were able to run marathons again after ... Read more
Dylan Kempers Hi Tracy, Thanks for your advice. I am happy for you that you were able to run marathons again after the surgery!
Joseph Heinzmann Dylan, It's frustrating to hear this but I constantly get reminded to listen to your body, be patient ... Read more
Joseph Heinzmann Dylan, It's frustrating to hear this but I constantly get reminded to listen to your body, be patient, and accept that it could take a year for all of the post-surgical variables to resolve. It's driven me crazy at times for sure. Those little setbacks you have had are just that, setbacks. They are not final and you'll get through it.
And can we all please agree not to talk about catheter removal.
I've been sharing with friends and family that my MV was repaired via surgery. I'm amazed at the amount of them that are telling me that they also have a prolapse ...Read more
I've been sharing with friends and family that my MV was repaired via surgery. I'm amazed at the amount of them that are telling me that they also have a prolapse of MV (with mild regurgitation). I know that about 2.5% (176 million people) of the world population has it, but it still amazes me when someone I know tells me that they do. I guess I was less unique than I thought :)
Cute Dylan…..you are unique, there is not another you. Continued good health heart warrior and God ... Read more
Cute Dylan…..you are unique, there is not another you. Continued good health heart warrior and God bless you
Marie Myers And notice the unending stream of faces on the surgical lineup, week after week. Lots of heart surger ... Read more
Marie Myers And notice the unending stream of faces on the surgical lineup, week after week. Lots of heart surgery going on ...
Dylan Kempers Marie, that's true! And these are just the ones that register on this site. I wonder how many more ar ... Read more
Dylan Kempers Marie, that's true! And these are just the ones that register on this site. I wonder how many more are out there having valve surgery worldwide everyday.
Hi Adam, One of the questions suggested in your website to ask to prospective surgeons is "What is your residual mitral regurgitation rate? (regurgitation rate ...Read more
Hi Adam, One of the questions suggested in your website to ask to prospective surgeons is "What is your residual mitral regurgitation rate? (regurgitation rate refers to patients who continue to have a leakage after a valve repair/replacement). Do you know if it means what percentage of the totality of those surgeons' patients (for instance, 5% of total patients still have leakage)? Or does it mean what leakage percentage of total patients (for instance, 3% leakage)? Thanks!
Nancy W I’m curious about this answer
My mitral valve repair was at Stanford in August 2020- 6 months late ... Read more
Nancy W I’m curious about this answer
My mitral valve repair was at Stanford in August 2020- 6 months later, the echo showed that I have residual moderate regurgitation which cardiologist and surgeons office say is normal ( I had severe regurgitation and no symptoms prior to surgery). All say surgery was a success and not to worry about the residual regurgitation.
Hi everybody.
I've been diagnosed with Mitral Valve Prolapse with Severe Regurgitation. I'm considering having my MV repaired by Dr. Alfredo Trento at Cedars ...Read more
Hi everybody.
I've been diagnosed with Mitral Valve Prolapse with Severe Regurgitation. I'm considering having my MV repaired by Dr. Alfredo Trento at Cedars Sinai. Has anybody had this specific type of surgery with Dr. Trento? How long ago? What was your experience?
Thank you.
Joseph Heinzmann Dylan, I just had a robotic MV repair done on the other side of the country so I can't comment on Dr. ... Read more
Joseph Heinzmann Dylan, I just had a robotic MV repair done on the other side of the country so I can't comment on Dr. Trento, but if you want to ask me anything about my experience, I'm always available. Good luck!
Dylan Kempers Thank you for your response, Joseph! I will reach out to you soon.
Susan Lynn Dylan - Dr. Trento is a world-renowned heart surgeon and one of the most experienced in robotic proce ... Read more
Susan Lynn Dylan - Dr. Trento is a world-renowned heart surgeon and one of the most experienced in robotic procedures. He was among the surgeons I contacted even though he was 3,000 miles away. I ultimately decided on a minimally invasive MV repair with a surgeon just outside of Philadelphia. Dr. Trento has an impeccable reputation - you will certainly get a great repair. Best of luck to you! ❤
Dylan Kempers Susan, thank you so much for your thorough response and for your good wishes! How long ago did you co ... Read more
Dylan Kempers Susan, thank you so much for your thorough response and for your good wishes! How long ago did you contact Dr. Trento?
Susan Lynn Sorry for the delay, Dylan! Just saw your question. It was almost four years ago since I reached ou ... Read more
Susan Lynn Sorry for the delay, Dylan! Just saw your question. It was almost four years ago since I reached out to Dr. Trento. My twin sister lives in southern California and she knew of his reputation in valve surgery. All the best to you! ❤
E Taub Dylan I'd love to know about your experience at Cedars and any tips or tricks. My MV surgery will be ... Read more
E Taub Dylan I'd love to know about your experience at Cedars and any tips or tricks. My MV surgery will be done by Dr. Chikwe a colleague of Dr. Trento. Also interested in knowing about recovery. How long were you laid up at home? When could you start getting out, etc?