Marguerite53
Premium Level User
Hello! I’ve been meaning to update the forum about my cardiac health so here goes. I recently had a second AVR to replace my replacement valve. My new bovine tissue valve is functioning well and though I’m mildly disappointed that I missed getting the newest generation valve, and missed out on TAVR — I’m still here and doing great!
The particulars: December 2016 after my annual echo, cardiologist told me it looked like 2-5 more years on the first valve and then I’d need a replacement. He said there was a lot of scar tissue and it was somewhat difficult to report on some parts of the echo.
Fast forward to late August 2017. Suddenly on a Friday evening I didn’t seem to be able to walk more than 20 feet without wanting to stop. I was not gasping for air — I just had no air. I got up the next morning and took my blood pressure. It was very low for me (90/50 or something). I called the weekend doctor who advised me to lay low and see regular GP on Monday if no improvement. Went in to see GP on Monday. She said the valve maybe sounded noisier. Oxygen % was okay. BP was a little more normal, did bloodwork, no heart attack, no failure. I was floating between cardiologists (insurance change), but she called my presumed new one who said, book an echo. I went home and did that. First available was 2 weeks out. The next day (a Tuesday) one little incident in the morning caused me to turn to my husband and say — this is ridiculous — take me to the ER.
I kept requesting an echo but the ER doctor had other things in mind first (blood, X-ray). Finally he ordered an echo. Again, not enough info in the results. But the blood work came back showing heart failure (just 24 hours later than the first test). They checked me in to the hospital and gave me a room. They scheduled a double angiogram for Wednesday (they went in through each wrist to see both sides of the heart). Those results revealed a “valve flail” (f-l-a-i-l). One of the leaflets on my tissue valve was frozen open. Severe regurgitation. They scheduled me for open heart surgery. Because there was no way for them to gauge the extent of damage/disintegration of the valve, they could not do trans-catheter procedure. Thursday I was transported to the heart hospital across town. Friday, Sept 1st, 7am my valve was replaced with the current model, Edwards Perimount Magna Ease 3300 TFX 23mm.
Picture perfect surgery. Easier than the first time (I was actually healthier, overall, going into it). I didn’t have time to get stressed, either! Sitting up right away, walking the 2nd day. 6 days later they were literally going over the discharge paperwork when I went into AFib.
They put you on an amioderone drip. They don’t really tell you what this might cause you. In most people it just quietly works. But…. for me, I was sitting up in a chair when a lemony smell took over and my head started to dip a little. Suddenly 6 people came bursting into the room all at once. Apparently my heart had paused for 7 seconds… quite a bit longer than normal! But, that’s the point of the amioderone — to kick the heart back into rhythm. Immediately they stopped the amioderone drip (no more drama for me). Then you wait 24-36 hours to see if you’ve kicked the AFib. Yes! But then I went into Atrial Flutter. Not good, either. So they scheduled a cardioversion for the next day (they also do a TEE first to be sure there have been no clots forming). Then you wait again. Finally! I get sent home on warfarin, with Lovenox shots (yeouch) and an Rx for daily high doses of amioderone. 12 total days in the hospital.
After several weeks they decrease the amioderone. Your body should be able to handle the reduction (as you taper off the med completely) but mine was not — my heart started dancing again. Some people don’t feel flutter or Afib. I did and it made me feel more ill than I can remember. Time for 2nd TEE/cardioversion (Sept. 29). So far, now mid February, flutter has not returned.
Recovery of the wound and everything else was without incident. Not much pain at all — I only used pain meds to sleep at night for a week after I got home and then switched to simple tylenol. Hopefully I’ll be off the warfarin in another month since the absence of the heart arrhythmias means my stroke risk needn’t be an issue. I will probably continue taking metoprolol — minimum dose. I think the metoprolol and amioderone used together is a rather new protocol for post surgery arrhythmias.
I must admit that I didn’t really know that my first valve would or could go down this way. I was diligent with my echos and cardiologist visits. I thought I was on top of it. I didn’t realize that valves deteriorate like that. I feel very lucky that I was home and not on some exotic vacation, and that I was educated enough to realize when something was amiss.
I’m feeling quite fine about all of it, actually. It’s great to be here!!!
The particulars: December 2016 after my annual echo, cardiologist told me it looked like 2-5 more years on the first valve and then I’d need a replacement. He said there was a lot of scar tissue and it was somewhat difficult to report on some parts of the echo.
Fast forward to late August 2017. Suddenly on a Friday evening I didn’t seem to be able to walk more than 20 feet without wanting to stop. I was not gasping for air — I just had no air. I got up the next morning and took my blood pressure. It was very low for me (90/50 or something). I called the weekend doctor who advised me to lay low and see regular GP on Monday if no improvement. Went in to see GP on Monday. She said the valve maybe sounded noisier. Oxygen % was okay. BP was a little more normal, did bloodwork, no heart attack, no failure. I was floating between cardiologists (insurance change), but she called my presumed new one who said, book an echo. I went home and did that. First available was 2 weeks out. The next day (a Tuesday) one little incident in the morning caused me to turn to my husband and say — this is ridiculous — take me to the ER.
I kept requesting an echo but the ER doctor had other things in mind first (blood, X-ray). Finally he ordered an echo. Again, not enough info in the results. But the blood work came back showing heart failure (just 24 hours later than the first test). They checked me in to the hospital and gave me a room. They scheduled a double angiogram for Wednesday (they went in through each wrist to see both sides of the heart). Those results revealed a “valve flail” (f-l-a-i-l). One of the leaflets on my tissue valve was frozen open. Severe regurgitation. They scheduled me for open heart surgery. Because there was no way for them to gauge the extent of damage/disintegration of the valve, they could not do trans-catheter procedure. Thursday I was transported to the heart hospital across town. Friday, Sept 1st, 7am my valve was replaced with the current model, Edwards Perimount Magna Ease 3300 TFX 23mm.
Picture perfect surgery. Easier than the first time (I was actually healthier, overall, going into it). I didn’t have time to get stressed, either! Sitting up right away, walking the 2nd day. 6 days later they were literally going over the discharge paperwork when I went into AFib.
They put you on an amioderone drip. They don’t really tell you what this might cause you. In most people it just quietly works. But…. for me, I was sitting up in a chair when a lemony smell took over and my head started to dip a little. Suddenly 6 people came bursting into the room all at once. Apparently my heart had paused for 7 seconds… quite a bit longer than normal! But, that’s the point of the amioderone — to kick the heart back into rhythm. Immediately they stopped the amioderone drip (no more drama for me). Then you wait 24-36 hours to see if you’ve kicked the AFib. Yes! But then I went into Atrial Flutter. Not good, either. So they scheduled a cardioversion for the next day (they also do a TEE first to be sure there have been no clots forming). Then you wait again. Finally! I get sent home on warfarin, with Lovenox shots (yeouch) and an Rx for daily high doses of amioderone. 12 total days in the hospital.
After several weeks they decrease the amioderone. Your body should be able to handle the reduction (as you taper off the med completely) but mine was not — my heart started dancing again. Some people don’t feel flutter or Afib. I did and it made me feel more ill than I can remember. Time for 2nd TEE/cardioversion (Sept. 29). So far, now mid February, flutter has not returned.
Recovery of the wound and everything else was without incident. Not much pain at all — I only used pain meds to sleep at night for a week after I got home and then switched to simple tylenol. Hopefully I’ll be off the warfarin in another month since the absence of the heart arrhythmias means my stroke risk needn’t be an issue. I will probably continue taking metoprolol — minimum dose. I think the metoprolol and amioderone used together is a rather new protocol for post surgery arrhythmias.
I must admit that I didn’t really know that my first valve would or could go down this way. I was diligent with my echos and cardiologist visits. I thought I was on top of it. I didn’t realize that valves deteriorate like that. I feel very lucky that I was home and not on some exotic vacation, and that I was educated enough to realize when something was amiss.
I’m feeling quite fine about all of it, actually. It’s great to be here!!!
