Stephen's Journal

Rose Madura  Hi Stephen.  They will most likely wean you off the drugs or reduce the dosages. I had a lot of afib/aflutter issues after my surgery and that's how it was with me.  Godspeed. 

  Hello Stephen and happy one month anniversary even though you have endured some set backs. But you are here posting and that’s great. I can’t post about your question but I’m sure some of our warriors here can comment on that. In the meantime I wish you to recover and your heart goes back to its rhythm. God bless you

Rita Savelis  I got an un expected pacemaker 11 days after double valve surgery (mitral and aortic). My heart was beating so slowly. Yes, this happens about 3% of the time and probably more common when several valves or the mitral valve is worked on. Sometimes those invisible electric lines get cut. My doctor waited 11 days hoping my heart would get back its rhythm but it didn't happen. I was devastated. I hated having yet another procedure (one is awake for pacemaker implantation) but the pacemaker has caused no problems and only kicks in when my beats get too low. I hate the big bulge though, but this is mainly because i am deathly skinny. On most bodies it doesn't show much. Take care. I'm sorry you have to go through this. (I had OHS almost 7 years ago).

Stephen Ray  Thanks! They waited 7 days but the low rate of 41 is not good, so it is supposed to be put in later today, then home tomorrow! I'm ready to move on!

Susan Lynn  Stephen - Welcome to recovery. Sorry to hear you're in that 5%, but fortunately the technology exists to get your heart rate where it needs to be. You'll do just fine! Please keep us posted on your progress. Glad you're headed home!!

Brady Busch  I had an aortic valve replacement and mitral repair on 11/16.They must have detected a slow pulse,so a pacemaker was installed on the 21st,just in case,to keep above 60bpm.WE want to stay upright,when walking and not go horizontal.

Stephen Ray  I left the hospital on Tuesday afternoon, 24 hours after pacemaker was installed. So far its just sore, but my resting heart rate is in the low 70's. The pace maker is set to kick in if my rate goes below 50. I've been nowhere near that, so now I'm wondering if they acted a little to fast. Couple more days, and heart rate seems fine on it's own. Now I'm stuck with a box sticking out of my chest! Not super happy about that, but a little too late. Other than that, recovery is going fine. I feel great and keep doing more and more each day. My doc wants me to take warfarin for 3 months as precaution, so now have to have regular blood tests to keep my INR in check. Fun!

Stephen Ray  After the pacemaker was installed, now I'm in afib all the time! My heart rate jumps to 150 for no apparent reason! I can be sitting completely still and here it comes. It wakes me up when I'm asleep or comes on when I'm driving. So now they want to do a cardioversion to shock my heart back to normal rythem. I'm scheduled for next Wednesday. I just want to be normal again! This is no fun.

Susan Lynn  Stephen - I was in the same boat four years ago. Ask all the questions you have about mv repair. There are plenty of us who have had the same diagnosis. Don't panic - it's not as bad as you think! ❤

Ginny Turner  Stephen, welcome to this wonderful information and support group. The shock you describe is familiar to many of us who feel healthy and have no outward symptoms of our valve disease. I also have severe mitral valve prolapse and will have repair surgery at the Cleveland Clinic in January with Dr. Marc Gillinov. You're lucky to live in Ohio - the Cleveland Clinic is such an outstanding heart hospital with so many highly skilled valve surgeons. The good news is that mitral valve repair is an extremely common surgery with outstanding success rates. You'll be just fine!
If you have questions, just post and you'll get answers and advice from former patients who've been there. The caring people in this group have certainly made this whole process easier for me. I'd also recommend that you buy Adam Pick's book, The Patient's Guide to Heart Valve Surgery. Click on the Store tab in the upper left corner to order. Adam is a former heart valve surgery patient himself, and his book is an invaluable resource. Best wishes to you going forward!

Thomas Brusstar  Hi, Stephen. Welcome to this unwelcome issue! I was disgnosed with a mitral valve prolapse when I was 20, but it wasn’t an issue until it started getting worse in my early 50s. They called it moderate regurgitation, to be watched; but then it turned to severe regurgitation with a “flail” leaflet (which is bad). I was 54 when that was diagnosed properly, but in retrospect when I was 53 I got very short of breath with coughing and it was diagnosed by clinic as pneumonia (I’m told MV failure is confused with pneumonia). So I had an open heart mitral valve repair at Northwestern in 2018 at age 54, and all is well. My heart had been working hard to make up for the gross mitral valve leakage, which was creating a dilated left atrium, very high pulmonary hypertension (the uncontrolled regurgitation into the left atrium forces pressure back up into the lungs and creates a bad backflow all the way into the right ventricle). So there are things going on inside your heart that are masking the dysfunction created by the regurgitation. So you just need to get it fixed and your heart will be able to return to a large extent to normal. I went in on a Tuesday morning and was home for dinner Friday. As of this week’s 3-year post-surgery echo and consult with my cardiologist, my repaired mitral valve has zero leakage. My left atrium has returned to a more normal size, but it is still enlarged because it was so super stressed by the flail leaflet. It’s about twice normal now, instead of 4x. So you should get it fixed and prevent all those other stresses from continuing. Congrats to your complex body for hiding the dysfunction from you/ compensating for all the regurgitation; but fixing it is easy. I agree being near the Cleveland Clinic makes that choice easy. My surgeon at Northwestern preferred open heart surgery instead of robotic, so he had more options depending on what he found in there plus it is faster (less time on the bypass loop with heart stopped); but there are plenty of robot fans on here. Your surgeon will recommend something. So that’s the long version of saying welcome and don’t delay the fix, you’ll do fine!

Deena Z  Fortunate you, Stephen that you live in Ohio with the Cleveland Clinic being there. One of your next steps might be to find out if you can have minimally invasive surgery, which is way less traumatic on the body. I had to have the full sternum cut, due to calcification, but there are lots of heart warriors, such as above, that had the minimally invasive. Know the pros and cons. Great that you are researching!

Stephen Ray  Thanks for all the updates and kind words. I've met with this world renowned surgeon from Italy, Dr Tommaso Hinna Danesi. He is now with UC Medical Center right here in my hometown Cincinnati, Oh. I'm scheduled for a minimally invasive Mitral valve repair on 12/6. In Italy, he has performed 1000's of these and patients came from all over Europe to get these repairs. And now, he's 30 minutes from my home. Much easier on the family and follow up visits. The count down begins!

George Gardopee  Stephen: like others here, I just had my mitral valve repaired two weeks ago. It was nowhere near as difficult as I imagined, and I had a full sternotomy. You will be surprised how quickly you will be over it. Good luck