Gregg
Member
One year anniversary and feeling great!
Went to visit my brother in Telluride, CO and skied in two feet of powder for a couple of days last week to celebrate. Overall, could not be doing any better...am going to work on my running in the spring to get back up to 6-7 miles where I was pre-surgery but other than that everything is fine.
Like a lot of people, I visit this site less and less as time goes on, but I do want to thank Steve, Greg and all of the other regular contributors on the board who helped people like me and many others through the entire process. Your time here means a lot to a great deal of people.
So, looking forward to year #2!
All the best,
Gregg
(Also, I re-posted my entry after the surgery last year below for anyone who might still be waiting to have surgery. Cannot recommend Dr. McCarthy and the Northwestern team any higher for those in the Chicago area.)
Valentine's Day Special
As I am sure many people have done prior to their surgery, I closely following this message board since I found out about my BAV / AA condition in November. Since I received so much information and positive reinforcement from everyone’s stories on this board I thought I should share my own.
I live outside of Chicago in Saint Charles, Illinois and was unaware I had any heart issues until mid-November. While driving down a two lane highway on a windy Sunday a tree fell down about 100 yards ahead of me blocking my lane. I got out and along with a couple of other drivers moved the tree to the side of the road and with the last 'heave-ho' proceeded to rupture my bicep tendon in my right arm. After seeing the orthopedic surgeon he said that I need to get a physical before my surgery to repair it - being a typical 44 year old guy in pretty good shape (I ran 7 miles the day before) I had not had a physical in about 4-5 years.
During my physical my doctor said "do you know you have a heart murmur?" I honestly did not...he referred me to a cardiologist who, after several tests, discovered my leaky BAV along with a 4.8 ascending root. He also told me to come back in 6 months to check it out. Well, I thought that was too long to wait so through my research both here and elsewhere I scheduled an appointment with Dr. Bonow at Northwestern (Bonow is a former president of the AHA). One of the other reasons I went for Bonow was that through my research I also discovered that Dr. McCarthy at Northwestern is one of the best valve guys in the world and I thought going through Bonow would be the best way to get him to do the surgery.
Dr. Bonow said that he was in a unique situation in that he usually has people referred to him for surgery and he tells them to wait but with me it was just the opposite. He said the concern was not so much on the 4.8 (remeasured at 4.6 root) but rather the size of my left ventricle. He said that while it is still working well it is borderline too large and that we should be looking at surgery within the next month or two.
So, I ended up meeting with Dr. McCarthy in January. After reviewing my information and tests he said that I am fortunate to have discovered this when I did because if we were meeting in a couple of years on this we would probably be talking about a transplant (yikes!). As others have noted on McCarthy, he is very confident - when I asked if there was any concern over my condition he said "nope, just another Tuesday..." He also mentioned that he has done over 10,000 of these which was reassuring as well. I decided to go with a bovine tissue and he cited the re-op numbers that others have stated here before. One piece of information I had never heard was that the valves tend to not last as long in younger patients due to the bodies production of calcium, not the level of activity that people have - I thought this was great in that I did not want to feel that I was “using up” my valve through increased exercise.
So, a week ago today I went into surgery at Northwestern for the Valentines Day special of BAV replacement and root repair. I can honestly say that I could have not hoped for a better recovery. Northwestern released me on day 4 which is the earliest they will do so. Overall, as many have stated on here, the process is no walk in the park but it is definitely 'survivable' and while still serious, it is amazing how routine the surgery is for them. I have been fortunate in that I have really had no complications at all. All the tests are coming back positive and I have been pushing myself where appropriate without overdoing it.
I do think there are some things that can be done to improve your chances of success outcome. The way I see it is that it is part about being in good physical shape, part having the best surgeon and team working on you, and part just good fortune that there are no complications. That gives the majority of the success factors in your control. Here are a few quick thoughts that I hope might be helpful to those who have surgeries coming up:
Breathing Tube: I woke up with the breathing tube in but was able to communicate with the family by writing notes. Not nearly as bad as I feared...they are basically going to leave it in until you take over the breathing. I noticed that it was doing less and less of the work and then I started to actively take over. It came out shortly afterwards - maybe an hour total. The majority of the first day in ICU is basically in a morphine-based blur.
Drainage Tubes: the first one came out on day 1 and the other two stayed in until day 3. These were probably the most uncomfortable things that take place during the stay but they were bearable. I have noticed that the surgery is about the heart but the recovery is about the lungs and that the battle is trying to take deep breaths and the tubes do limit your ability to do so. Removal of the tubes was more weird than painful. Things improve quickly once they are removed.
Walking: make no mistake, walking is a challenge the first days but you need to make yourself do it. On my first lap the day after surgery they basically give you a little cart to hold your oxygen and off you go. You will be amazed how weak you feel, but you will also be amazed how much further you can walk each time. My wife and I went for our first walk at home for a few hundred yards on day 5 and to be honest with you I could have done twice as much. But, as my wife keeps reminding me I need to take it easy...still trying to figure out how much to push it...
Mental Aspects: one of my biggest concerns heading into the surgery was the time spent on the heart lung machine and what the impact would be on me mentally. Once again, I think this might be another consideration for selecting the best surgeon. One of the other surgeons on the Northwestern team said that McCarthy is 'scary fast' when it comes to time on the machine. He basically had me on for 30 minutes to replace the BAV and another 30 minutes to replace the aorta root. Thankfully I can say there has been no mental impact that I can tell from the surgery...I have actually started doing some work and conference calls out of home over the past couple of days.
So, overall at one week out I feel surprisingly well. I am thankful for the team at Northwestern and for the tree that decided to fall over on a windy November day (a bit of divine intervention I believe). I would like to thank everyone on this board for making the process easier and also Steve and Greg a who sent me personal notes both before and after the surgery. For those waiting to go into surgery, please let me know if there are any questions I can help answer. Otherwise, I will continue with the recovery process (although I might head down to Florida next week for a little better weather!)
All the best,
Gregg
Went to visit my brother in Telluride, CO and skied in two feet of powder for a couple of days last week to celebrate. Overall, could not be doing any better...am going to work on my running in the spring to get back up to 6-7 miles where I was pre-surgery but other than that everything is fine.
Like a lot of people, I visit this site less and less as time goes on, but I do want to thank Steve, Greg and all of the other regular contributors on the board who helped people like me and many others through the entire process. Your time here means a lot to a great deal of people.
So, looking forward to year #2!
All the best,
Gregg
(Also, I re-posted my entry after the surgery last year below for anyone who might still be waiting to have surgery. Cannot recommend Dr. McCarthy and the Northwestern team any higher for those in the Chicago area.)
Valentine's Day Special
As I am sure many people have done prior to their surgery, I closely following this message board since I found out about my BAV / AA condition in November. Since I received so much information and positive reinforcement from everyone’s stories on this board I thought I should share my own.
I live outside of Chicago in Saint Charles, Illinois and was unaware I had any heart issues until mid-November. While driving down a two lane highway on a windy Sunday a tree fell down about 100 yards ahead of me blocking my lane. I got out and along with a couple of other drivers moved the tree to the side of the road and with the last 'heave-ho' proceeded to rupture my bicep tendon in my right arm. After seeing the orthopedic surgeon he said that I need to get a physical before my surgery to repair it - being a typical 44 year old guy in pretty good shape (I ran 7 miles the day before) I had not had a physical in about 4-5 years.
During my physical my doctor said "do you know you have a heart murmur?" I honestly did not...he referred me to a cardiologist who, after several tests, discovered my leaky BAV along with a 4.8 ascending root. He also told me to come back in 6 months to check it out. Well, I thought that was too long to wait so through my research both here and elsewhere I scheduled an appointment with Dr. Bonow at Northwestern (Bonow is a former president of the AHA). One of the other reasons I went for Bonow was that through my research I also discovered that Dr. McCarthy at Northwestern is one of the best valve guys in the world and I thought going through Bonow would be the best way to get him to do the surgery.
Dr. Bonow said that he was in a unique situation in that he usually has people referred to him for surgery and he tells them to wait but with me it was just the opposite. He said the concern was not so much on the 4.8 (remeasured at 4.6 root) but rather the size of my left ventricle. He said that while it is still working well it is borderline too large and that we should be looking at surgery within the next month or two.
So, I ended up meeting with Dr. McCarthy in January. After reviewing my information and tests he said that I am fortunate to have discovered this when I did because if we were meeting in a couple of years on this we would probably be talking about a transplant (yikes!). As others have noted on McCarthy, he is very confident - when I asked if there was any concern over my condition he said "nope, just another Tuesday..." He also mentioned that he has done over 10,000 of these which was reassuring as well. I decided to go with a bovine tissue and he cited the re-op numbers that others have stated here before. One piece of information I had never heard was that the valves tend to not last as long in younger patients due to the bodies production of calcium, not the level of activity that people have - I thought this was great in that I did not want to feel that I was “using up” my valve through increased exercise.
So, a week ago today I went into surgery at Northwestern for the Valentines Day special of BAV replacement and root repair. I can honestly say that I could have not hoped for a better recovery. Northwestern released me on day 4 which is the earliest they will do so. Overall, as many have stated on here, the process is no walk in the park but it is definitely 'survivable' and while still serious, it is amazing how routine the surgery is for them. I have been fortunate in that I have really had no complications at all. All the tests are coming back positive and I have been pushing myself where appropriate without overdoing it.
I do think there are some things that can be done to improve your chances of success outcome. The way I see it is that it is part about being in good physical shape, part having the best surgeon and team working on you, and part just good fortune that there are no complications. That gives the majority of the success factors in your control. Here are a few quick thoughts that I hope might be helpful to those who have surgeries coming up:
Breathing Tube: I woke up with the breathing tube in but was able to communicate with the family by writing notes. Not nearly as bad as I feared...they are basically going to leave it in until you take over the breathing. I noticed that it was doing less and less of the work and then I started to actively take over. It came out shortly afterwards - maybe an hour total. The majority of the first day in ICU is basically in a morphine-based blur.
Drainage Tubes: the first one came out on day 1 and the other two stayed in until day 3. These were probably the most uncomfortable things that take place during the stay but they were bearable. I have noticed that the surgery is about the heart but the recovery is about the lungs and that the battle is trying to take deep breaths and the tubes do limit your ability to do so. Removal of the tubes was more weird than painful. Things improve quickly once they are removed.
Walking: make no mistake, walking is a challenge the first days but you need to make yourself do it. On my first lap the day after surgery they basically give you a little cart to hold your oxygen and off you go. You will be amazed how weak you feel, but you will also be amazed how much further you can walk each time. My wife and I went for our first walk at home for a few hundred yards on day 5 and to be honest with you I could have done twice as much. But, as my wife keeps reminding me I need to take it easy...still trying to figure out how much to push it...
Mental Aspects: one of my biggest concerns heading into the surgery was the time spent on the heart lung machine and what the impact would be on me mentally. Once again, I think this might be another consideration for selecting the best surgeon. One of the other surgeons on the Northwestern team said that McCarthy is 'scary fast' when it comes to time on the machine. He basically had me on for 30 minutes to replace the BAV and another 30 minutes to replace the aorta root. Thankfully I can say there has been no mental impact that I can tell from the surgery...I have actually started doing some work and conference calls out of home over the past couple of days.
So, overall at one week out I feel surprisingly well. I am thankful for the team at Northwestern and for the tree that decided to fall over on a windy November day (a bit of divine intervention I believe). I would like to thank everyone on this board for making the process easier and also Steve and Greg a who sent me personal notes both before and after the surgery. For those waiting to go into surgery, please let me know if there are any questions I can help answer. Otherwise, I will continue with the recovery process (although I might head down to Florida next week for a little better weather!)
All the best,
Gregg
