Isis
Well-known member
Well the day has come. I?m scheduled for AVR on Sept. 11; should be an easy anniversary date to remember. This great site has been very helpful in preparing me for all the decisions for the big day, so I thought I?d post my story as it may give some insight to others needing AVR.
First a little background. In 2000 I was diagnosed with aortic insufficiency at 37 years old. The cardio told be it would be about 5 years until I?d needed AVR. Two years later he told me I needed surgery and performed a cath and sent me to a surgeon. I was still very active with cycling and running, and feeling fine. So I went to another cardio for a second opinion before signing up for the surgery. He performed more testing including a nuclear stress test. He told me I was not in need of AVR at that time which was great as I did not feel like it was time yet either.
I continued seeing the second cardio for the next five years; having a nuclear stress test once a year and echos. Each yearly test showed slight increases in left ventricle volume and decreases in ejection fraction. In 2006 he told me it was getting close and to start getting ready; and in July of this year we set the wheels in motion. A cath was done and I went off to visit two surgeons. I have 3+ aortic insufficiency with moderate aortic stenosis.
Prior to seeing the surgeons I got on the net and began researching AVR and valve types and came upon this great site.
First was the type of valve to choose. I went back and forth on tissue or mechanical for a week or two. I was leaning toward a tissue valve at first but as time went by it became obvious that a mechanical would be best for me.
Reasons: 1) I did not want to have the prospect of a second surgery hanging over me for the next 15 years (plus or minus). The last seven years went by pretty fast. Hopefully the mechanical will be one and done. 2) A good support system is very helpful in getting through the surgery and recovery; I have that now but maybe/maybe not in 15 years. 3) I?m not too worried about the coumadin as I think I?ll be able to handle the daily routine and blood monitoring; but time will tell. 4) Even with a tissue valve there is a chance that coumadin may be required for life.
Next I needed to find the right valve. I came upon the ON-X name in this website and began researching that model. All the literature and medical research articles I read looked good. So, I went to the surgeons knowing the ON-X was my first choice, although I?d still be open to any suggestions they had. One of the surgeons I saw works out of Florida Hospital in Orlando. He suggested a mechanical valve which I agreed with and then began telling me about a newer valve they are using and its benefits. I knew he was talking about the ON-X before he told me the name. So, that was that on the valve decision. He also suggested doing a minimally invasive procedure which is what I had hoped for going in. The sternum is opened from the top, down to a point between the 2nd and 3rd rib, then short horizontal cuts are made to each side. So, the surgeon visit was easy and relatively stress free. Coming out of the visit I felt pretty much ready to go. Going in with knowledge of what?s going on is extremely helpful. That?s where this great site helps so much.
Also, it turns out that Florida Hospital is one of the research sites for the ON-X valve low anticoagulation therapy study. I was contacted by the on-site coordinator and asked if I wanted to be involved, probably in the Plavix + aspirin group or the low INR group since I am considered low risk. We had a meeting and I gave them a preliminary yes. Basically I would be in the study for 5 years and home test my blood once per month and sent in the number. After 5 years my results would be sent to the FDA for review and I would go back on the standard coumadin routine. The FDA ruling on the acceptability of using plavix+aspirin or low dose coumadin with the on-x valve would come out sometime later. I read somewhere it would be in the 2015 timeframe. Have not fully decided yet if I will participate or not. The study would start 3 months after surgery as I will be on full coumadin for the first 3 months as is recommended for everyone after AVR . So, that gives me time to sort out some questions and talk with my cardiologist.
Anyway that?s my story. I?m feeling eager to get the surgery done; almost looking forward to it in a strange way. The best thing is that I know going in what to expect before, during and after surgery. Thanks to everyone who has gone before and posted such helpful information and opinions to this site.
First a little background. In 2000 I was diagnosed with aortic insufficiency at 37 years old. The cardio told be it would be about 5 years until I?d needed AVR. Two years later he told me I needed surgery and performed a cath and sent me to a surgeon. I was still very active with cycling and running, and feeling fine. So I went to another cardio for a second opinion before signing up for the surgery. He performed more testing including a nuclear stress test. He told me I was not in need of AVR at that time which was great as I did not feel like it was time yet either.
I continued seeing the second cardio for the next five years; having a nuclear stress test once a year and echos. Each yearly test showed slight increases in left ventricle volume and decreases in ejection fraction. In 2006 he told me it was getting close and to start getting ready; and in July of this year we set the wheels in motion. A cath was done and I went off to visit two surgeons. I have 3+ aortic insufficiency with moderate aortic stenosis.
Prior to seeing the surgeons I got on the net and began researching AVR and valve types and came upon this great site.
First was the type of valve to choose. I went back and forth on tissue or mechanical for a week or two. I was leaning toward a tissue valve at first but as time went by it became obvious that a mechanical would be best for me.
Reasons: 1) I did not want to have the prospect of a second surgery hanging over me for the next 15 years (plus or minus). The last seven years went by pretty fast. Hopefully the mechanical will be one and done. 2) A good support system is very helpful in getting through the surgery and recovery; I have that now but maybe/maybe not in 15 years. 3) I?m not too worried about the coumadin as I think I?ll be able to handle the daily routine and blood monitoring; but time will tell. 4) Even with a tissue valve there is a chance that coumadin may be required for life.
Next I needed to find the right valve. I came upon the ON-X name in this website and began researching that model. All the literature and medical research articles I read looked good. So, I went to the surgeons knowing the ON-X was my first choice, although I?d still be open to any suggestions they had. One of the surgeons I saw works out of Florida Hospital in Orlando. He suggested a mechanical valve which I agreed with and then began telling me about a newer valve they are using and its benefits. I knew he was talking about the ON-X before he told me the name. So, that was that on the valve decision. He also suggested doing a minimally invasive procedure which is what I had hoped for going in. The sternum is opened from the top, down to a point between the 2nd and 3rd rib, then short horizontal cuts are made to each side. So, the surgeon visit was easy and relatively stress free. Coming out of the visit I felt pretty much ready to go. Going in with knowledge of what?s going on is extremely helpful. That?s where this great site helps so much.
Also, it turns out that Florida Hospital is one of the research sites for the ON-X valve low anticoagulation therapy study. I was contacted by the on-site coordinator and asked if I wanted to be involved, probably in the Plavix + aspirin group or the low INR group since I am considered low risk. We had a meeting and I gave them a preliminary yes. Basically I would be in the study for 5 years and home test my blood once per month and sent in the number. After 5 years my results would be sent to the FDA for review and I would go back on the standard coumadin routine. The FDA ruling on the acceptability of using plavix+aspirin or low dose coumadin with the on-x valve would come out sometime later. I read somewhere it would be in the 2015 timeframe. Have not fully decided yet if I will participate or not. The study would start 3 months after surgery as I will be on full coumadin for the first 3 months as is recommended for everyone after AVR . So, that gives me time to sort out some questions and talk with my cardiologist.
Anyway that?s my story. I?m feeling eager to get the surgery done; almost looking forward to it in a strange way. The best thing is that I know going in what to expect before, during and after surgery. Thanks to everyone who has gone before and posted such helpful information and opinions to this site.
