Introduction / Unexpected Aortic Regurgitation/Insufficiency

[BillyG2]

For some reason when I quoted your post in individual areas what I wrote basically became part of your text. Just wanted to let you know in case you wanted to read my responses to some of the things you wrote. I went back and put what I wrote in quotes.

Yeah, I saw that, but thanks for the warning!

 

[BillyG2]

Does a national database like this exist in the US and other countries ?

I'm not sure how I could have not found it by now if something does exist that I could have access to. The two closest things I have found include the following:

1. The Society of Thoracic Surgeons has a national database with mortality and morbidity rates by either surgeon group or hospital. It's been a month or more since I looked at it, but I do not think that they had quantities of surgeries listed.
2. I have come across reports provided by Medicare, the "national social insurance program, administered by the U.S. federal government since 1966 [that] provides health insurance for Americans aged 65 and older who have worked and paid into the system." These reports have shown the volume of types of surgeries for specific surgeons that were covered by Medicare.

The cousin of two friends had AVR about 2 years ago. He told me his father-in-law is a top neurosurgeon at a well known hospital and was able to pull more detailed information about specific surgeons and their outcomes than he could otherwise get himself.

 

[cldlhd]

I'm not sure how I could have not found it by now if something does exist that I could have access to. The two closest things I have found include the following:

1. The Society of Thoracic Surgeons has a national database with mortality and morbidity rates by either surgeon group or hospital. It's been a month or more since I looked at it, but I do not think that they had quantities of surgeries listed.
2. I have come across reports provided by Medicare, the "national social insurance program, administered by the U.S. federal government since 1966 [that] provides health insurance for Americans aged 65 and older who have worked and paid into the system." These reports have shown the volume of types of surgeries for specific surgeons that were covered by Medicare.

The cousin of two friends had AVR about 2 years ago. He told me his father-in-law is a top neurosurgeon at a well known hospital and was able to pull more detailed information about specific surgeons and their outcomes than he could otherwise get himself.

I'd try to get some inside info from them. I was searching around online earlier checking out the 1st North American Aortic Valve Repair Symposium which was held earlier this year in Philly. It was hosted by Penn and Bavaria was the director. There were 2 reasons I was trying to dig into it - For the part about bicuspid repair Bavaria said he was going to use my case and there was also a presentation about trileaflet aortic valve repair presented by the 1st surgeon that I was referred to. I figured there might be some info in there that could be relevant to you.

 

[BillyG2]

Too much time has passed since I last posted, so an update is long overdue.
Since my last update, Dr. Svensson's nurse called me to give me his opinion after reviewing all of my medical history and tests. She said that Dr. Svensson did not think my aortic valve was repairable at all, which was surprisingly interesting based on the videos I've seen in which Dr. Svensson talks about repair, written content online, and what other patients have said about Dr. Svensson and his probabilities of repair. Dr. Svensson recommended replacing the aortic valve with a St. Jude Medical mechanical valve.

I am definitely intrigued. If Dr. Svensson says that he does not view a repair as an option, it will be very interesting if Dr. Trento does the surgery and does successfully repair the valve, something he will not do unless he believes the repair will last at least 10 years. As a quick refresher, Dr. Trento said he would estimate the probability of repair at 80%.

For @cldlhd's benefit (and the benefit of others, I suppose), I did not reach out to Dr. Bavaria. I think if I had more time before my scheduled surgery with Trento, wasn't feeling comfortable with Trento, or felt I needed another opinion, I would have reached out to him. I was afraid getting Dr. Bavaria's opinion would just further delay surgery, so I left things as they seemed to be playing out.

Based on all of the above, I am comfortable with Dr. Trento performing the surgery at Cedars-Sinai for the following reasons, among others:

1. I was most interested in differentiating between the many highly skilled surgeons based on the possibility of repair. If Dr. Svensson does not view repair as an option, then that point of consideration is less important. (And I suppose it is an added bonus that Dr. Trento seems more open to the possibility of a repair at this time.)
2. If repair is not an option, Dr. Trento will use an On-X valve, whereas Dr. Svensson will use a St. Jude Medical mechanical valve. The On-X valve is appealing (to me, as to others) because of the lower INR requirements. Perhaps I do not know enough about the different valves to really make as good of a decision as the surgeons that deal with these valves every day (i.e., it's hard to say I disagree with Dr. Svensson's recommendation), but I have seen several accounts of many other great surgeons, such as Dr. Roselli at the Cleveland Clinic, that have recommended the On-X valve.
3. This is the least important factor, but since all things feel pretty good with Dr. Trento, I would prefer not delaying surgery to go to Cleveland Clinic or elsewhere. I've been miserable not being able to workout with the intensity I thrive on, so the sooner I can fix the problem, the sooner I can start recovery!

I'm not sure I mentioned this before, but my originally scheduled date of November 4 got pushed back to November 13 - this Friday. Eeeeek! This is coming up fast. I've been so busy trying to get things in order for the small business I own, I haven't had time to do much else, such as get more involved here.

With all that being said, I fly to LA tomorrow, have pre-op tests on Thursday, and am scheduled for surgery on Friday. I'm not sure what else to say at this point, as I'm sure many of the feelings I have are similar to what many of those on the forums have felt or are feeling. I hate saying that I am excited for surgery because it is certainly not something I would ever want to go through, but knowing that I have no choice but to fix the problem and that the sooner I do so, the sooner I will start to get better, I am excited for surgery. I really do not think about the negative things that could occur or go wrong. Any time those thoughts start to seep into my mind, I block them out with all of the positive stories from real people I have read on these forums and elsewhere.

In a weird way, I hope I'm not underestimating or under-planning anything. I know a lot of people have a lot of questions about things to bring to the hospital, the pain, the breathing tube, how quickly they can do one thing or another, etc. It has been great to read all of the stories from so many that have shared their personal experiences so I have some ideas of what I may experience, but in so doing, I recognize that everyone goes through this experiencing different ups and downs, all on their own timelines. I hope to share more about my personal experience of surgery and recovery, especially in ways it may be unique compared to other stories I have read, so that others can similarly learn from it and know what they might experience. But other than paying attention to some of the many things I may experience, I haven't worried about them because I know many others have gotten through this, and I will, too.

I'm ready!

 

[pellicle]

Hi

Since my last update, Dr. Svensson's nurse called me to give me his opinion after reviewing all of my medical history and tests.
...The four parties in the opposition (Socialists, Left Bloc, Communists and the Green Party) presented four separate motions of rejection

from the breadth of your post I think you are the most "on the money prepared for this" I've read here yet.

I haven't worried about them because I know many others have gotten through this, and I will, too.

I'm ready!

Its encouraging to read stuff like this ... I believe you are and I believe you will

see you on the other side mate!

 

[BillyG2]

from the breadth of your post I think you are the most "on the money prepared for this" I've read here yet.

That was the abbreviated version.

 

[cldlhd]

The difference of opinion is interesting. I told Bavaria I only wanted a repair if he thought it was going to be very durable if not I wanted the mechanical. At that point it was all his judgement. It's good to hear the update from you and your positive outlook. I also felt like the date was rushing towards me and wondered if I had all bases covered, it's probably a very common feeling but I'm sure you'll be fine.
Best of luck on the 13th ( Friday the 13th?, I have to assume you're not superstitious -ha ) . Give us a post surgery update when you feel like it but obviously taking care of yourself will be your first priorityk

 

[BillyG2]

The difference of opinion is interesting. I told Bavaria I only wanted a repair if he thought it was going to be very durable if not I wanted the mechanical. At that point it was all his judgement.

Before I even really commented or asked questions, Dr. Trento said basically the same thing. I certainly plan on reiterating that point before surgery for my own peace of mind, but I'm at the point at which I trust the guy to use his skill to do what he needs to do.

It's good to hear the update from you and your positive outlook. I also felt like the date was rushing towards me and wondered if I had all bases covered, it's probably a very common feeling but I'm sure you'll be fine.

Yeah, it's probably a common feeling. My girlfriend kept thinking I was trying to push things off. I really wasn't; I just wanted to make an educated decision. I think I talked to at least 5 surgeons, at least 2 of which were not really a consideration. One was a friend of a friend and the other was the guy that maintains a blog about athletes and the heart. If I felt even the slightest amount of discomfort with the direction I was headed, other than the natural discomfort to be expected with something like this, I would have reached out to more surgeons, and Bavaria would have been one of my first.

Friday the 13th?, I have to assume you're not superstitious -ha

I'm an athlete, so of course I have superstitions! Or call them habits, routines, quirks, or whatever . . . Or maybe it's partly my OCD, although I always argue that any athlete has to have some form of a mental issue to keep doing what they do. As a swimmer, for example, how many times have I gone back and forth and back and forth looking down at a black line on the bottom of a pool? How many times did Michael Jordan crazily stand at a free throw line or practice other things. Wasn't there also something about him always wearing the same shorts under his team shorts? We're all at least a little crazy and superstitious.

When the hospital told me the new date was Friday the 13th, my gut reaction was, "Uh, wait a sec." But after thinking about it, it seems like a pretty good date. I tend to favor odd numbers over even numbers, so having 3 sequential odd numbers (11, 13, 15) for the date of the surgery seems pretty good, right? And since there aren't but a few Fridays that fall on the 13th of the month in a given year, it's unique, which also seems like a great/special day for surgery.

 

[cldlhd]

Before I even really commented or asked questions, Dr. Trento said basically the same thing. I certainly plan on reiterating that point before surgery for my own peace of mind, but I'm at the point at which I trust the guy to use his skill to do what he needs to do.



Yeah, it's probably a common feeling. My girlfriend kept thinking I was trying to push things off. I really wasn't; I just wanted to make an educated decision. I think I talked to at least 5 surgeons, at least 2 of which were not really a consideration. One was a friend of a friend and the other was the guy that maintains a blog about athletes and the heart. If I felt even the slightest amount of discomfort with the direction I was headed, other than the natural discomfort to be expected with something like this, I would have reached out to more surgeons, and Bavaria would have been one of my first.



I'm an athlete, so of course I have superstitions! Or call them habits, routines, quirks, or whatever . . . Or maybe it's partly my OCD, although I always argue that any athlete has to have some form of a mental issue to keep doing what they do. As a swimmer, for example, how many times have I gone back and forth and back and forth looking down at a black line on the bottom of a pool? How many times did Michael Jordan crazily stand at a free throw line or practice other things. Wasn't there also something about him always wearing the same shorts under his team shorts? We're all at least a little crazy and superstitious.

When the hospital told me the new date was Friday the 13th, my gut reaction was, "Uh, wait a sec." But after thinking about it, it seems like a pretty good date. I tend to favor odd numbers over even numbers, so having 3 sequential odd numbers (11, 13, 15) for the date of the surgery seems pretty good, right? And since there aren't but a few Fridays that fall on the 13th of the month in a given year, it's unique, which also seems like a great/special day for surgery.

That's interesting, I actually do a little thing where I add numbers and see if they add up odd or even, like 72 is 9 etc..I used to play basketball and definitely had my own rituals.
I would go back and forth with the various plusses and minuses and I would occasionally feel like I was about to get the "just make up you're damn mind" but to the credit of my friends and family they were patient.
You'll be able to look at Friday the 13th as a positive day after this.

 

[BillyG2]

Surgery wrapped up about 6 PM PT (21 hours ago). My girlfriend had been keeping my phone hostage, but she has now released it. Things went well. Dr. Trento repaired my aortic valve. I'm still in the ICU but sat in a chair earlier, walked 2 laps, can get 3 balls up but can't hold them long, had all tubes and catheter pulled, and finished my second meal of the day. I definitely have a lot of pain. Whenever Dad asks where it hurts, I tell him my little toe. I've supposedly been released from the ICU but I'm still hanging out here for a while.
More later or another day.

 

[cldlhd]

Congrats! You'll be Home before you know it. Glad to hear it went well.

 

[pellicle]

Glad to see you through the gate

 

[honeybunny]

Congratulations! All the best for a speedy recovery

 

[AZ Don]

Congratulations! Glad all went well. I think you'll find yourself progressing almost daily. Soon you will likely have to hold yourself back, as it is important to take it easy and give your heart time to recover.

 

[BillyG2]

Congratulations! Glad all went well. I think you'll find yourself progressing almost daily. Soon you will likely have to hold yourself back, as it is important to take it easy and give your heart time to recover.

I think I reached that point of needing to hold back by the second day out of the hospital. I'm not sure I am progressing at all, but I humbly feel there is not much I need to do except have my sternum heal. I cannot believe how great I currently feel, and I am quite grateful for that.

I actually saw my cardiologist today, and she was very pleased with how everything is looking (except for the fluid around the heart, which she suspects meds will take care of soon). When I was leaving, I said, "So I can start swimming again next week, right?" She said, "Yeah, not quite!" I definitely need to slow down a bit. Because of surgery, my parents will be in town for Thanksgiving, and coincidentally some other family will be in town for Thanksgiving as well. That's probably a good thing because seeing everyone and spending time with family will prevent me from getting back to doing too much work. I own my own business, so it's hard to slow down. My plan is to try to set 1 or 2 tasks I want to accomplish each day and then try not to do too much more, but knowing me and my personality, that's going to be tough!

 

[cldlhd]

Glad to hear it's going well. It can be a fine line between wanting to progress and get back to normal and overdoing it. Don't overdo it

 

[BillyG2]

Glad to hear it's going well. It can be a fine line between wanting to progress and get back to normal and overdoing it. Don't overdo it

Can you think of any signs to signal I may be overdoing it? There are probably some obvious ones, but any personal accounts anyone can share might be helpful.

 

[cldlhd]

I would say don't overdue it in terms of lifting too much is a pretty big one. The sternum will heal at its own rate. I think for those in good shape going into this there can be a tendency to be in more of a hurry to get fully back to normal which is understandable.

 

[Zoltania]

Increased fatigue would be a sign that you're overdoing it. I experienced that recently when I tried going back to work and going back to the gym in the same week. Previously I had been feeling great and walking briskly for half an hour twice every day, but adding work and commuting and also light gym workouts turned out to be too much. As the week went on I became more and more fatigued. Now I've realized that the second three months of recovery is still a phase of recovery; you're not magically all better at three months. As a friend who had bypass surgery put it, there is a long tail to recovery.