Dylan 's Journal

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!

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 :)

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!

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.