Since I found this site after my surgery, no one here has had the chance to hear my eventful story of the weeks/months that lead up to surgery. So now that I finally have a few minutes to spare, I thought I'd post it for all to read and enjoy (much easier to do when you're not LIVING it 
).
First off, I want to clarify that I have congenital heart defects and have ALWAYS had to deal with heart matters. It doesn't really seem to matter how I live my life, the ol' ticker keeps wearing down...
At any rate, back in December of 2001 I had a stress echo done because I'd experienced a couple of episodes of chest pains when under stress that my card wanted to check out. I expected to find NOTHING, and so did my card. But we did it just to be on the safe side. Unfortunately, there was something. When under the stress of exersize, my ventrical was not beating efficiantly. I can't tell you and measurements or anything, all I know is that it wasn't "quite right." So I went in for a cath in January, and my info was sent to a specialist in Toronto. Now, at this point I was getting really close to the end of my pacemaker's battery life, so I needed a replacement soon. We thought that, MAYBE, I'd be able to have both surgeries at the same time. But Toronto drug their feet on looking over the info, then requested several other tests, then took forever to get back to us again... They finally said I should get a valve replacement. So we started making decisions on where.
My pacemaker made one decision for us. The day before my scheduled pacemaker check visit, my pacer went into backup mode (60 bpm, no matter WHAT I was doing). I felt awful, and went into the hospital right away to have the surgery the next morning. Fortunately, pacemakers are a piece of cake for me now, so the experience was fairly uneventful.
Well, with the pacemaker out of the way, we had a little more time to play with. But I wanted to have the surgery early in the summer so I would have pleanty of time for recovery before having to go back to work (I'm a teacher). We were finally able to schedule surgery for June 13 at Texas Children's Hospital with Dr. Fraser (head of cardiology). I had to go in a few days early so I could to pre-op testing and talk to the surgeon. First day of pre-op testing we find out I have a bladder infection. Arg!!! They put me on antibiotics, but weren't sure if I would be able to have the surgery on my scheduled day because of the infection. We kept our fingers crossed (at this point we just wanted it over with). The next day we went up to the hospital for more tests and as we were driving back to my mother's house (that's where we were staying while in Houston) I realized I'd left my purse in the cafeteria. So we turned around and went back. I looked around, and couldn't find it ANYWHERE. Even talked to many of the people who worked in the area, to no avail. Crying (you know how stress can get to you) I got back in the car and we headed back out. On the way my mom used her cell phone to cancel her credit card (which I have one of) and then decided to call her voice mail at home. Low and behold, someone had found my purse and were staying at the hospital with their daughter, so we could come by and pick it up when we had the chance! The amazing thing is, the way they got the phone number is because I have my checkbook in my purse and have not had new checks made since moving out of my mother's house (several years ago)! What a blessing that procrastination was.
So the day before the surgery came and I finally met the surgeon. And what he had to say stunned us all (my mom, my hubby, and me). He felt that the valve repair was NOT the way to go to help me out. I have a very complicated anatomy, and 5 years before I had surgery to patch the holes I had in my heart. After that surgery I felt SO much better than I had EVER felt in my life. But he felt that it was that surgery that caused my current problems. He felt that the patches had created more pressure in one ventrical than the other, and thus causing problems with the valve. He said that he would rather take down all that we had done in the previous surgery and "start over." He felt that it was POSSIBLE we would be able to recondition my heart so they could do ANOTHER surgery in a few years to "fix" my anotomy so the blood vessels were all going to their "correct" places. But it was only a possibility, because he hadn't done it to anyone my age before. So here we were facing a VERY difficult decision: do I have a surgery that might make me worse (valve replacement), or a surgery that would put me back to the way I had been before but could possibly lead to a "correction" ? I did not want to put surgery off any more. I know from experience that waiting is the worst part, and I wanted it over with. I finally told him I wanted him to do what he thought was best. But on the way home I called my card in Dallas to talk to her. The cell phone kept cutting in and out, so I agreed to call her back from my mother's house (by this time it was pretty late in the day).
I got there, and paged her, then waited for her to call back. Just as the phone rang, what should happen? You won't believe this, but I was STUNG BY A WASP on the back of the head! Looking back it was pretty funny, but at the time it was anything but. So I answered the phone saying "OW, OW, OW!" and my brother and husband were running around the room trying to spray the wasp with bug killer while my mom went to get some baking soda to put on my sting. Quite a shocking greeting for my card, but she just laughed.
Anyway, I explained what Dr. Fraser and we had talked about, and my card felt she would like to talk to him herself and call me back. When she did, we decided to go ahead with the surgery the next morning.
So the next morning comes (you all know THAT anxiety) and we arrive at the hospital. They gave us a private waiting room to sit in. I was sent down to have a blood test (they had forgotten to have me stop my asprin a few days in advance), and then it was all waiting. Finally, the surgeon stops in. He's decided he won't be doing the surgery that day. He had apparently been up all night looking over my file and noticed some conflicting data, so he wanted to get another test done to confirm what the pressures in my ventrical were before he proceded. He also wanted to discuss my case with the cardiology team one more time. So surgery was postponed. We told them we didn't have much more time, because I needed to be recovered by the time school started back up. The were going to do a TEE that day, then discuss my case the following Monday and would get back to us with a date.
Well, it happens that we were planning to spend our first wedding anniversary in the hospital (June 16th). But now we were free, though we didn't know for how long. We knew we had at least until Monday, so we decided to go to New Orleans (I'd never been) since it was not all THAT far from Houston. We had a nice time, even though we had a constant cloud hanging over us. On Monday headed back to Houston and called the surgeon's office. The surgry had been rescheduled for June 24th, a week later. It seemed like forever. We stayed at Mom's, since we would again need to go in for pre-op testing. We were all VERY ready for "the day" to come.
If finally did. But everyone who talked to us kept saying I was having a valve replacement. When I had talked to the nurse, she had said we were going with the option we had talked to the surgeon about. We were very confused, so I refused to let them give me any drugs until I could talk to the surgeon himself and find out what I would be coming out of the OR with. He finally came by and explained that the numbers he got from the TEE showed that a valve replacemnt might be a good idea after all, but he was going to leave his options open.
Well, I got my shiny new St. Jude's valve.... FINALLY.
But the story is not quite done. While still in the hosptial (TCH is really a wonderful place to stay if you have to be in a hospital) I had to go down and get x-rays every other day (I was having problems with fluid around my heart, and a lung not fully inflating). One of those days I got an IDIOT for a technitian. As you all know, it is next to impossible to get to a laying position, much less getting back up. And on that FLAT hard x-ray table to boot. So of course, I needed the help of the technitians. The one who helped me down was great. She supported me all the way down. However, the idiot who helped me up yanked me by the arm, and even when I said "OW, wait, my chest!" her reply was "You're almost up,dear." I was crying when I came out of the x-ray room and my mom was very upset. We made sure to tell every one of the nurses what had happened, and they sent a patient rep. to the room so we could let them know what had happened and the technitian would at least find out what she'd done wrong (I really didn't want her to do that to some little kid).
Well, fortunately for everyone involved, the rest of recovery was pretty uneventful. I'm doing alright now, though having some problems with very low bp in the am. I'm sorry for getting so long winded, I just wanted to share my story with you wonderful people. I wish I had all the emails I'd sent to friends and family when all this was going on so I can re-read them. I'm sure they are a hoot.
Thanks for reading this far (if you made it )
).First off, I want to clarify that I have congenital heart defects and have ALWAYS had to deal with heart matters. It doesn't really seem to matter how I live my life, the ol' ticker keeps wearing down...
At any rate, back in December of 2001 I had a stress echo done because I'd experienced a couple of episodes of chest pains when under stress that my card wanted to check out. I expected to find NOTHING, and so did my card. But we did it just to be on the safe side. Unfortunately, there was something. When under the stress of exersize, my ventrical was not beating efficiantly. I can't tell you and measurements or anything, all I know is that it wasn't "quite right." So I went in for a cath in January, and my info was sent to a specialist in Toronto. Now, at this point I was getting really close to the end of my pacemaker's battery life, so I needed a replacement soon. We thought that, MAYBE, I'd be able to have both surgeries at the same time. But Toronto drug their feet on looking over the info, then requested several other tests, then took forever to get back to us again... They finally said I should get a valve replacement. So we started making decisions on where.
My pacemaker made one decision for us. The day before my scheduled pacemaker check visit, my pacer went into backup mode (60 bpm, no matter WHAT I was doing). I felt awful, and went into the hospital right away to have the surgery the next morning. Fortunately, pacemakers are a piece of cake for me now, so the experience was fairly uneventful.
Well, with the pacemaker out of the way, we had a little more time to play with. But I wanted to have the surgery early in the summer so I would have pleanty of time for recovery before having to go back to work (I'm a teacher). We were finally able to schedule surgery for June 13 at Texas Children's Hospital with Dr. Fraser (head of cardiology). I had to go in a few days early so I could to pre-op testing and talk to the surgeon. First day of pre-op testing we find out I have a bladder infection. Arg!!! They put me on antibiotics, but weren't sure if I would be able to have the surgery on my scheduled day because of the infection. We kept our fingers crossed (at this point we just wanted it over with). The next day we went up to the hospital for more tests and as we were driving back to my mother's house (that's where we were staying while in Houston) I realized I'd left my purse in the cafeteria. So we turned around and went back. I looked around, and couldn't find it ANYWHERE. Even talked to many of the people who worked in the area, to no avail. Crying (you know how stress can get to you) I got back in the car and we headed back out. On the way my mom used her cell phone to cancel her credit card (which I have one of) and then decided to call her voice mail at home. Low and behold, someone had found my purse and were staying at the hospital with their daughter, so we could come by and pick it up when we had the chance! The amazing thing is, the way they got the phone number is because I have my checkbook in my purse and have not had new checks made since moving out of my mother's house (several years ago)! What a blessing that procrastination was.
So the day before the surgery came and I finally met the surgeon. And what he had to say stunned us all (my mom, my hubby, and me). He felt that the valve repair was NOT the way to go to help me out. I have a very complicated anatomy, and 5 years before I had surgery to patch the holes I had in my heart. After that surgery I felt SO much better than I had EVER felt in my life. But he felt that it was that surgery that caused my current problems. He felt that the patches had created more pressure in one ventrical than the other, and thus causing problems with the valve. He said that he would rather take down all that we had done in the previous surgery and "start over." He felt that it was POSSIBLE we would be able to recondition my heart so they could do ANOTHER surgery in a few years to "fix" my anotomy so the blood vessels were all going to their "correct" places. But it was only a possibility, because he hadn't done it to anyone my age before. So here we were facing a VERY difficult decision: do I have a surgery that might make me worse (valve replacement), or a surgery that would put me back to the way I had been before but could possibly lead to a "correction" ? I did not want to put surgery off any more. I know from experience that waiting is the worst part, and I wanted it over with. I finally told him I wanted him to do what he thought was best. But on the way home I called my card in Dallas to talk to her. The cell phone kept cutting in and out, so I agreed to call her back from my mother's house (by this time it was pretty late in the day).
I got there, and paged her, then waited for her to call back. Just as the phone rang, what should happen? You won't believe this, but I was STUNG BY A WASP on the back of the head! Looking back it was pretty funny, but at the time it was anything but. So I answered the phone saying "OW, OW, OW!" and my brother and husband were running around the room trying to spray the wasp with bug killer while my mom went to get some baking soda to put on my sting. Quite a shocking greeting for my card, but she just laughed.
Anyway, I explained what Dr. Fraser and we had talked about, and my card felt she would like to talk to him herself and call me back. When she did, we decided to go ahead with the surgery the next morning.
So the next morning comes (you all know THAT anxiety) and we arrive at the hospital. They gave us a private waiting room to sit in. I was sent down to have a blood test (they had forgotten to have me stop my asprin a few days in advance), and then it was all waiting. Finally, the surgeon stops in. He's decided he won't be doing the surgery that day. He had apparently been up all night looking over my file and noticed some conflicting data, so he wanted to get another test done to confirm what the pressures in my ventrical were before he proceded. He also wanted to discuss my case with the cardiology team one more time. So surgery was postponed. We told them we didn't have much more time, because I needed to be recovered by the time school started back up. The were going to do a TEE that day, then discuss my case the following Monday and would get back to us with a date.
Well, it happens that we were planning to spend our first wedding anniversary in the hospital (June 16th). But now we were free, though we didn't know for how long. We knew we had at least until Monday, so we decided to go to New Orleans (I'd never been) since it was not all THAT far from Houston. We had a nice time, even though we had a constant cloud hanging over us. On Monday headed back to Houston and called the surgeon's office. The surgry had been rescheduled for June 24th, a week later. It seemed like forever. We stayed at Mom's, since we would again need to go in for pre-op testing. We were all VERY ready for "the day" to come.
If finally did. But everyone who talked to us kept saying I was having a valve replacement. When I had talked to the nurse, she had said we were going with the option we had talked to the surgeon about. We were very confused, so I refused to let them give me any drugs until I could talk to the surgeon himself and find out what I would be coming out of the OR with. He finally came by and explained that the numbers he got from the TEE showed that a valve replacemnt might be a good idea after all, but he was going to leave his options open.
Well, I got my shiny new St. Jude's valve.... FINALLY.
But the story is not quite done. While still in the hosptial (TCH is really a wonderful place to stay if you have to be in a hospital) I had to go down and get x-rays every other day (I was having problems with fluid around my heart, and a lung not fully inflating). One of those days I got an IDIOT for a technitian. As you all know, it is next to impossible to get to a laying position, much less getting back up. And on that FLAT hard x-ray table to boot. So of course, I needed the help of the technitians. The one who helped me down was great. She supported me all the way down. However, the idiot who helped me up yanked me by the arm, and even when I said "OW, wait, my chest!" her reply was "You're almost up,dear." I was crying when I came out of the x-ray room and my mom was very upset. We made sure to tell every one of the nurses what had happened, and they sent a patient rep. to the room so we could let them know what had happened and the technitian would at least find out what she'd done wrong (I really didn't want her to do that to some little kid).
Well, fortunately for everyone involved, the rest of recovery was pretty uneventful. I'm doing alright now, though having some problems with very low bp in the am. I'm sorry for getting so long winded, I just wanted to share my story with you wonderful people. I wish I had all the emails I'd sent to friends and family when all this was going on so I can re-read them. I'm sure they are a hoot.
Thanks for reading this far (if you made it
)
