D
dhougland
Hi, everybody. I'm brand new here. I got a reference to this forum from WebMD, searching for information. I'm 58 years old, and cardiologists at the local V.A. Hospital in Portland, Oregon are telling me that I have severe aortic stenosis, and that I need an aortic valve replacement as soon as possible. They say I'm at risk for sudden death right now even though I have few recognizable symptoms. I've had a recent angiogram that indicated my coronary arteries are normal and no bypasses are needed, only the valve replacement. I'm scared to death and am trying to inform myself to whatever extent I can. I've never had health insurance (can't get it because of pre-existing service-related lung conditions) and don't have the resources to go shopping for other surgeons or other institutions. As a disabled veteran, my health care comes from the V.A.
What really has my anxiety at near-panic levels is that this is the same hospital where I had a right-side thoracotomy just two years ago, and that performance, at least from the viewpoint of the patient, was less than stellar. My understanding of that procedure two days before the surgery was that the surgeon would use a laparoscope inserted through a small incision between ribs to biopsy the target, and he would do a full-blown thoracotomy only if the target proved to be cancerous, and he needed to do a lobectomy. In the operating room, the surgeon couldn't find the target with the laparoscope, so he just went ahead and sliced me open, severed connecting tissue and cracked my ribs so he could keep digging into the lung the hard way. In the end, the whole thing turned out to be unnecessary. He apparently couldn't find the target because there wasn't one, it was a misinterpreted CT scan, nothing more than a patch of abnormal lung tissue due to one of the lung conditions they already knew I had. I survived and recovered, so the operation was considered a success, and everybody involved just told me how lucky I was that there wasn't actually any reason for it. I understand that having a thoracotomy AND cancer would be worse, but it's a lot like being hit by a car and then having the driver tell you that you're lucky he wasn't driving a bus.
Now, two years later, they want to do a sternotomy for a valve replacement. That last recovery was long and extremely painful, and knowing that it didn't have to happen didn't help. I don't know what to do except look for information and some confidence. I guess I was wondering if anyone on this forum had experience with this kind of procedure at a V.A. hospital. I've found general statistics on the procedure and the On-X artificial valve that they seem to be recommending, but those are adjusted only for age and overall health of the patient. I will say that they appear to be excellent for my age group, but I have other concerns like the possibility of collateral damage from those cracked ribs and the severity and duration of pain. I'm being told that I'm exaggerating the risk of collateral damage and that the pain will probably be less severe this time, but I don't know how to interpret what I'm being told.
Sorry if I'm being long-winded, but I feel like I've been bit by a rattlesnake, and now I've got that same rattlesnake saying, "Hey kid, c'mere, I've got something for you." But at the same time, I have no reason to doubt that I need this. I've had a heart murmur since I was fourteen, and they've been doing echocardiograms for several years. They say there is clear evidence that the stenosis of the aortic valve is progressing, but the other valves are normal. I'm told the aortic valve opening has been measured at as little as .7 cm squared. I don't want the first real symptom to be sudden death. The scare tactics they've used have worked: I'm scared. What I need now is some confidence-building, but I don't know where to look for it. I've been reading here all day, and there is obviously a lot of compassion here from people who have been there, so if anyone can address anything I've said, it would be welcome. I've received compassion from the cardiologists at the V.A. as well, but compassion isn't what I want from them. They've only been there vicariously. What I want from them is a good surgery.
I've voiced my concerns to them to the extent I feel I can. I'm trying now to be proactive by force-feeding myself to regain the weight I've lost stressing over this in the last few weeks and doing exercises I hope might help rebuild upper body muscle mass. I don't have a date yet, but I'm told this surgery needs to happen as soon as possible, so if I'm going to find some way to walk back into that prep room, take my clothes off and submit to whatever happens when I'm unconscious and paralyzed, now is the time. Reading material (I've seen references to a book I thought I would try to find.) If anyone has had both a thoracotomy and a sternotomy and can help me understand how the two compare. Anything that can be offered by anyone who has been between this rock and this hard place would be welcome.
I thought of this for weeks as a choice between bad and worse. I've at least come to realize that this is a false framing. It isn't a choice between bad and worse, it's a choice between going through something bad in order to get to something good, as opposed to something that's just plain bad period. When I went to WebMD, I was hoping to find a place where I could hear from people who have faced this monster down, and who know it can be beaten. I know lots of people have beaten this demon, and I know the surgeon has been doing OHS procedures for twenty years, but he hasn't been doing it to me for twenty years. I'm a little ashamed to admit it, but I've admitted it to others recently: what I fear most is the pain. Last time the pain was so severe that it had me on my left side for three months before I could tolerate rolling partly onto my back, and six months before I was pain-free except when exerting and could return to work. I've seen posts here that have been encouraging on that point. Okay, I'm out of gas, and I'm going to go back to reading these threads. Thank you.
What really has my anxiety at near-panic levels is that this is the same hospital where I had a right-side thoracotomy just two years ago, and that performance, at least from the viewpoint of the patient, was less than stellar. My understanding of that procedure two days before the surgery was that the surgeon would use a laparoscope inserted through a small incision between ribs to biopsy the target, and he would do a full-blown thoracotomy only if the target proved to be cancerous, and he needed to do a lobectomy. In the operating room, the surgeon couldn't find the target with the laparoscope, so he just went ahead and sliced me open, severed connecting tissue and cracked my ribs so he could keep digging into the lung the hard way. In the end, the whole thing turned out to be unnecessary. He apparently couldn't find the target because there wasn't one, it was a misinterpreted CT scan, nothing more than a patch of abnormal lung tissue due to one of the lung conditions they already knew I had. I survived and recovered, so the operation was considered a success, and everybody involved just told me how lucky I was that there wasn't actually any reason for it. I understand that having a thoracotomy AND cancer would be worse, but it's a lot like being hit by a car and then having the driver tell you that you're lucky he wasn't driving a bus.
Now, two years later, they want to do a sternotomy for a valve replacement. That last recovery was long and extremely painful, and knowing that it didn't have to happen didn't help. I don't know what to do except look for information and some confidence. I guess I was wondering if anyone on this forum had experience with this kind of procedure at a V.A. hospital. I've found general statistics on the procedure and the On-X artificial valve that they seem to be recommending, but those are adjusted only for age and overall health of the patient. I will say that they appear to be excellent for my age group, but I have other concerns like the possibility of collateral damage from those cracked ribs and the severity and duration of pain. I'm being told that I'm exaggerating the risk of collateral damage and that the pain will probably be less severe this time, but I don't know how to interpret what I'm being told.
Sorry if I'm being long-winded, but I feel like I've been bit by a rattlesnake, and now I've got that same rattlesnake saying, "Hey kid, c'mere, I've got something for you." But at the same time, I have no reason to doubt that I need this. I've had a heart murmur since I was fourteen, and they've been doing echocardiograms for several years. They say there is clear evidence that the stenosis of the aortic valve is progressing, but the other valves are normal. I'm told the aortic valve opening has been measured at as little as .7 cm squared. I don't want the first real symptom to be sudden death. The scare tactics they've used have worked: I'm scared. What I need now is some confidence-building, but I don't know where to look for it. I've been reading here all day, and there is obviously a lot of compassion here from people who have been there, so if anyone can address anything I've said, it would be welcome. I've received compassion from the cardiologists at the V.A. as well, but compassion isn't what I want from them. They've only been there vicariously. What I want from them is a good surgery.
I've voiced my concerns to them to the extent I feel I can. I'm trying now to be proactive by force-feeding myself to regain the weight I've lost stressing over this in the last few weeks and doing exercises I hope might help rebuild upper body muscle mass. I don't have a date yet, but I'm told this surgery needs to happen as soon as possible, so if I'm going to find some way to walk back into that prep room, take my clothes off and submit to whatever happens when I'm unconscious and paralyzed, now is the time. Reading material (I've seen references to a book I thought I would try to find.) If anyone has had both a thoracotomy and a sternotomy and can help me understand how the two compare. Anything that can be offered by anyone who has been between this rock and this hard place would be welcome.
I thought of this for weeks as a choice between bad and worse. I've at least come to realize that this is a false framing. It isn't a choice between bad and worse, it's a choice between going through something bad in order to get to something good, as opposed to something that's just plain bad period. When I went to WebMD, I was hoping to find a place where I could hear from people who have faced this monster down, and who know it can be beaten. I know lots of people have beaten this demon, and I know the surgeon has been doing OHS procedures for twenty years, but he hasn't been doing it to me for twenty years. I'm a little ashamed to admit it, but I've admitted it to others recently: what I fear most is the pain. Last time the pain was so severe that it had me on my left side for three months before I could tolerate rolling partly onto my back, and six months before I was pain-free except when exerting and could return to work. I've seen posts here that have been encouraging on that point. Okay, I'm out of gas, and I'm going to go back to reading these threads. Thank you.
. Best wishes and good luck.
