Mitral valve repair with post op issues
I live in Canada not far from Toronto.
I have known since my mid-20s that I had Mitral Valve Prolapse (I’m 54 now). It was consider “asymptomatic” and did not affect me (supposedly) over the years. According to my doctor in Feb 2016, an X-ray revealed I had an enlarged heart caused by “serious Mitral Valve Regurgitation”. I was setup with a heart surgeon in the summer of 2016. The surgery to repair the valve was May 29th of 2017. The surgery was complex and took about 8 hrs. It was considered a "success" however, I experiencd post op issues. I gained 30lbs in fluid and went into congestive heart failure. I also developed atrial flutter and went into ventricular tachycardia 5 different times (shocks reset my heart). The estimated 5 day hospital stay turned into 2 months.
I not only lost the 30 lbs of fluid in the hospital but then I lost anothet 30 lbs (mostly mustle mass). My wife and I never expected the post op issues and/or the long hospital stay.
I also developed vision problems since the surgery and the opthamologist doesn't know if my normal vision will return. Otherwise, he said my eyes are fine. I also had “mini strokes” at some point during or after the surgery. These likely caused my vision issues.
The “mini strokes” also affected my arms and hands (numbness, shaking)
I went through cardiac rehab in the fall of 2017 but it didn't really rehab me much. After that I have been trying to put on muscle mass and my weight is now 170lbs (I'm 5' 11" so that's where I should be)
One of the other complications after my surgery is a low Ejection Fractin in my heart. Mine is currently about 30% which means I don't have much stamina.
I have to take a lot of pills daily to help control and strengthen my heart.
Before they released my from the hospital they put an ICD in my chest to control my heart pace and/or shock my heart if necessary. Since my release from the hospital in 2017 I've been shocked 5 times (most recently 2 times on Nov 12th which put me back in the hospital from Nov 12th to 16th). The morning of Nov 12th I was doing my work from the home office and then around 10am I started feeling dizzy. I recognized it as the feeling I get just before getting shocked. So I went upstairs and felt dizzier. I blacked out and next thing I know I was laying on my back on the floor. Fortunately I landed on my daughter’s dog's bed. I managed to get up and called my wife. She called 911 and ambulance and fire came.
They took me to emergency department and started monitoring me. My wife was with me by then. While we were sitting there I slumped over but have no memory of what happened for the next few minutes. They told me afterwards I lost my pulse for 3 minutes and they started CPR. Shortly after that the ICD kicked in and reset my heart.
We eventually found out that my ICD threshold was set to go off at 188 beats per minute but during the tachycardia my heart rate was at about 167bpm. Then eventually my heart rate went above the threshold and the ICD shocked me. To me it seemed like I just blinked my eyes and all that stuff happened.
They admitted me to the hospital to monitor me and figure out what should (could) be done.
They eventually determined I needed a different ICD, so on Nov 16th I had surgery to give me a new ICD. The old model was a 1-wire ICD and they replaced it with a 2-wire model.
The benefit of the 2 wire is that they can dedicate one wire for pacing my heartbeat and the second wire to give the shocks. The 1 wire model can do both but it's not ideal. They also put me back on the drug Amiodarone (which can have some bad side effects)
The problem should have been checked more frequently over the years and maybe it could have been repaired BEFORE my heart got damaged beyond repair. Hindsight is 20/20 right?
My moods go up and down. I get depressed because of the unknown and all the things I can no longer do. It doesn't appear that my ejection fraction has (or will) improve. Before the surgery I was told that I would be as "good as new" after the surgery (ya right).
I also cannot drive until mid-May (6 months from my last shock). This is another thing that depresses me.
I have another appointment on January17th so we shall see what the plan is. I'm not sure if there is any other surgery that improve things. I sent a summary of my condition in December to my surgeon (I last saw him in June 2018)
I'm sorry this is not a happy recovery story but this is what can happen sometimes.
I hope this group can provide feedback, answer questions and provide inspiration. At this point I don't envision improving and/or living very long.