Kristian
Active member
Hi everyone - my first post, although I've been reading the forums since my surgery nearly 5 weeks ago. I thought that I'd share a bit of my story (seems to be a popular thing around here) and maybe weave in a few questions.
Quick background: I was diagnosed with Marfan Syndrome about 20 years ago and had been seen by a wonderful cardio at Johns Hopkins. I had corrective surgery for pectus excavatum at age 16 and remember the recovery well. I had long suffered from severe mitral valve regurgitation and my aortic root was expanding. As I got into my 30's I thought that I was just slowing down a bit, and that the long Minnesota winters were starting to make me fat. (I moved here at 30, 5 years ago). I went to the doctor to get a refill on atenolol and was told to find a local cardio.
I did, and without any tests, he said that I needed surgery right away. I did a few tests with him - and did well - and decided to head back to Hopkins to get a proper second opinion. While things weren't as dire as the local cardio suggested, "it was time", as Dr. Traill told me. It was early July.
I knew instantly where I wanted to go - the Mayo Clinic. I also knew that I wanted to have surgery ASAP. Within two days I had scheduled the surgery and had clearance from my insurance company.
My procedure: I had a full week of pre-op consults with the fantastic team at the Mayo. This ranged from allergy testing (I once had a reaction to amoxicillin) to an ENT doc (to screen for bloody nose problems once on blood thinners) and of course a cardio and finally with the surgeon. I was really lucky that my Dr. at Hopkins had taught the doctor at the Mayo, who specialized in exactly my problems.
The only thing that I messed up was when they asked me about a history of atrial fibrillation. I had apparently suffered from it quite often, but I thought that it was simply anxiety. I answered that I didn't think that I had any bouts with afib.
Anyway, on August 3rd I had an Aortic Composite Graft with mechanical valve put in, and after about an hour of trying to save my Mitral Valve, they chopped it out and gave me a mechanical there as well. This was on my own orders, as I hope to only have to do this once, so I chose mechanical over pig valve or a difficult repair. Oh, I also had a bicuspid aortic valve so replacement was preferred over repair there as well.
I walked from the ICU to my room (private!) the day after my surgery and was simply astounded at how well I felt! I had zero stamina but I was walking and I actually didn't hurt much.
Two days out I had my first bout of afib. It was bad enough that my chest was very sore, and so three days after my surgery I was cardioverted (shocked) three times. I was under for this but it still wasn't fun. However, it fixed the afib. It came back the next day, but went away on it's own, thankfully.
After a bit of wackiness with the blood thinner and a stubborn chest tube (I accidentally disconnected it from the vacuum in the middle of the night, and gave myself a bit of air in my chest), I was finally released about 6 days after surgery. I got home, visited with friends for two hours and then pretty much passed out.
At this point I started assessing the various little complications that I went through. I had a bit of trouble typing, I had a number of ocular migraines, the afib, constipation (prune juice helped!), and one of the oddest complications - I had full body twitches at the moment when I was just falling asleep. I did have loads of trouble sleeping and I think that I was so tired that I was twitching.
Three weeks out I had a recurrence of atrial fibrillation. This put a huge halt to my physical recovery, as this time my heart was beating at about 130/140 bpm resting. They offered to cardiovert me locally and I scheduled it for a week later. Woke up the day before cardiovert with no afib, thankfully. That was one week ago. Since then I've had some PVCs while sleeping on my left side only, and I'm still pretty bad with stamina, but once I drag my lazy rear off the couch I feel great.
I do have reduced LVEF, but have been assured that it should improve over time.
Have others suffered afib after surgery? Again, I've been told that about 50% do, and the longer I'm out from surgery the less chance of afib.
Well, I guess that's it.
Thanks for listening, and I'm glad to have found y'all
-Kristian
Quick background: I was diagnosed with Marfan Syndrome about 20 years ago and had been seen by a wonderful cardio at Johns Hopkins. I had corrective surgery for pectus excavatum at age 16 and remember the recovery well. I had long suffered from severe mitral valve regurgitation and my aortic root was expanding. As I got into my 30's I thought that I was just slowing down a bit, and that the long Minnesota winters were starting to make me fat. (I moved here at 30, 5 years ago). I went to the doctor to get a refill on atenolol and was told to find a local cardio.
I did, and without any tests, he said that I needed surgery right away. I did a few tests with him - and did well - and decided to head back to Hopkins to get a proper second opinion. While things weren't as dire as the local cardio suggested, "it was time", as Dr. Traill told me. It was early July.
I knew instantly where I wanted to go - the Mayo Clinic. I also knew that I wanted to have surgery ASAP. Within two days I had scheduled the surgery and had clearance from my insurance company.
My procedure: I had a full week of pre-op consults with the fantastic team at the Mayo. This ranged from allergy testing (I once had a reaction to amoxicillin) to an ENT doc (to screen for bloody nose problems once on blood thinners) and of course a cardio and finally with the surgeon. I was really lucky that my Dr. at Hopkins had taught the doctor at the Mayo, who specialized in exactly my problems.
The only thing that I messed up was when they asked me about a history of atrial fibrillation. I had apparently suffered from it quite often, but I thought that it was simply anxiety. I answered that I didn't think that I had any bouts with afib.
Anyway, on August 3rd I had an Aortic Composite Graft with mechanical valve put in, and after about an hour of trying to save my Mitral Valve, they chopped it out and gave me a mechanical there as well. This was on my own orders, as I hope to only have to do this once, so I chose mechanical over pig valve or a difficult repair. Oh, I also had a bicuspid aortic valve so replacement was preferred over repair there as well.
I walked from the ICU to my room (private!) the day after my surgery and was simply astounded at how well I felt! I had zero stamina but I was walking and I actually didn't hurt much.
Two days out I had my first bout of afib. It was bad enough that my chest was very sore, and so three days after my surgery I was cardioverted (shocked) three times. I was under for this but it still wasn't fun. However, it fixed the afib. It came back the next day, but went away on it's own, thankfully.
After a bit of wackiness with the blood thinner and a stubborn chest tube (I accidentally disconnected it from the vacuum in the middle of the night, and gave myself a bit of air in my chest), I was finally released about 6 days after surgery. I got home, visited with friends for two hours and then pretty much passed out.
At this point I started assessing the various little complications that I went through. I had a bit of trouble typing, I had a number of ocular migraines, the afib, constipation (prune juice helped!), and one of the oddest complications - I had full body twitches at the moment when I was just falling asleep. I did have loads of trouble sleeping and I think that I was so tired that I was twitching.
Three weeks out I had a recurrence of atrial fibrillation. This put a huge halt to my physical recovery, as this time my heart was beating at about 130/140 bpm resting. They offered to cardiovert me locally and I scheduled it for a week later. Woke up the day before cardiovert with no afib, thankfully. That was one week ago. Since then I've had some PVCs while sleeping on my left side only, and I'm still pretty bad with stamina, but once I drag my lazy rear off the couch I feel great.
I do have reduced LVEF, but have been assured that it should improve over time.
Have others suffered afib after surgery? Again, I've been told that about 50% do, and the longer I'm out from surgery the less chance of afib.
Well, I guess that's it.
Thanks for listening, and I'm glad to have found y'all-Kristian
