This post has been delayed because my appointment had to be rescheduled twice, once for a snowstorm and once because my surgeon had to go into emergency surgery.
On Monday I went back to U of M for several appointments, including finally meeting my heart surgeon, which is what will be the focus of this post.
The appointment began with him going over my latest MRI results with me. He confirmed what I already knew, which is that I need surgery. He DID however have very, very GOOD news to share with me: he is 99% sure that my valve can be saved!!! For those that may not quite understand what the significance of this is, let me explain. The reason that I am having surgery is because I have a large aortic aneurysm. My aorta is a little over double the size that it should be. At one end of the aorta, the end that connects to the heart, there is a valve. More often than not when people have surgery for an aortic aneurysm, they not only have the enlarged part of the aorta replaced, but they also have this valve replaced with either an artificial valve or a pig or cow valve. There are many downsides to having your valve replaced. Most notably, if you get an artificial valve, you have to be on blood thinners for the rest of your life. (If you're not familiar with blood thinners, they suck.) If you have either a pig or cow valve put in, they don't last very long, and you have to have relatively frequent operations to keep replacing it. So, when my surgeon said that my valve can most likely be saved, that is GREAT news!!! It means that after my operation, not only will I not need to be on blood thinners, but, as long as no complications arise, that will be the LAST heart surgery I will have to have! (Hooooooray!!!)
I went to my appointment prepared with questions to ask my surgeon in order to gauge his experience and skill level. Here is the information I gathered from these questions:
-He performs approximately 150-200 operations a year, or 2-3 a week.
-He has operated on about 50-100 patients with Marfan Syndrome (it was very important that I asked this question because patients with Marfans are much harder to operate on-- our hearts tear much easier than those of someone without Marfans, which means he not only has to be that much more careful during surgery, but he has to REALLY know what he is doing!)
-There is a 2% mortality rate
-He is not registered with the Marfan foundation, but he has given lectures regarding Marfan Syndrome and has a lot of experience with Marfan patients.
-The surgery I need to have lasts approximately six hours
-It will take about three months for my bone to heal (my sternum, because they have to literally saw it in half in order to gain access to my heart)
-I should be feeling back to normal within two months
When I asked my surgeon when he thinks surgery will be, he initially said within three months. He could tell I was upset by this, so he asked why. I explained how I wanted to wait until after I graduate from WMU to have my operation, which will be in roughly nine months. When I told him this, he was either hesitant about it or just thinking it through- either way, it took him a little while to agree to waiting that long. He said that it should be fine as long as I take it easy until then. No problems there- I'm bed bound about 22 hours a day as it is.
So, I walked away from my appointment feeling really good. Not only can my valve be saved, but I can graduate before surgery! All good things, right? Well, the following day I started having second thoughts about waiting so long. I began talking to people in a heart surgery support group and a Marfan support group. I also contacted one of my old professors who teaches in WMU's medical school to get her advice. Finally, I posted about my dilemma on Facebook. Aside from about 2 or 3 people, EVERYONE agreed that I SHOULD NOT wait nine months for surgery, but should have it as soon as possible. Reasons given were that it is too risky to wait- my aorta is a ticking time bomb, and a degree is worthless if I'm dead. Additionally, the longer I wait, the more likely it is that my valve will NOT be able to be saved. People also suggested that I might struggle with school because I will be so stressed out about the upcoming surgery.
Hearing everyone almost unanimously agree that I should NOT wait until I graduate to have surgery, I began to get really anxious and stressed out. Yes, school means so, so much to me. Yes, I want to graduate before surgery because of the possible cognitive complications I will have after surgery that would hinder my academic performance. And yes, I even had some morbid thoughts- if I were to die during surgery, I at LEAST wanted to know that I had accomplished something in my life, namely, getting my degree.
On the other hand, everyone's concerns really got to me. I thought maybe I should cancel my Summer II classes and have surgery then, or maybe continue with my Summer I and Summer II classes but cancel my Fall classes so that I can have surgery then. Or, maybe I should just finish my current semester and THEN have surgery. Well, I decided to contact my surgeon. I spoke with his nurse and voiced my concerns. She said that despite what everyone is saying, HE is the doctor, and if he said it would be okay to wait nine months, then it is okay. Additionally, if he thought there was risk involved in waiting the nine months, he would've said so. I should trust the surgeon, he is the expert. She also suggested that instead of waiting until November to have my CT scan, that I should have it earlier if it will give me peace of mind that my aorta is stable. Despite all of this, I still wanted her to voice my concerns to my surgeon, and I am still waiting to hear back on that.
I also got back in touch with the nurse at the Marfan Foundation. I explained everything to her to get her advice on what I should do. I also sent her the results from my latest MRI which included exact measurements of my aorta. She discussed all of this and showed my MRI results to one of the Marfan Foundation's doctors, and this is what he said: "As discussed I forwarded the MRI results and images that you provided to one of our cardiology experts. Based on the information provided he thinks that you could wait the nine months saying that it seems to him that you might be able to wait even longer." Additionally, the nurse I spoke to suggested that I ask my surgeon specifically how many valve sparing procedures he has performed, which is a question I did not think to ask him. Again, still waiting to hear his response. (my surgeon is understandably busy, so I will probably hear back next week.)
SO, where does this leave me? Despite the many, many people who have voiced concerns about waiting nine months for my operation (and I can't ever express my gratitude for all of these people weighing in on the matter and giving me advice), the fact that both my surgeon and the Marfan Foundation's nurse and doctor state that it would be okay to wait nine months has to show me that it really is okay to wait that long for surgery. The surgeon obviously knows what he is talking about, and the people at the Marfan Foundation are experts in Marfan Syndrome, especially the cardiac aspects of it. These people know what they are talking about. I trust them.
Instead of waiting until November to have my CT scan, I will probably have it in four months. If my aorta shows growth, surgery will be pushed up. If it remains stable, I will wait until after graduation so have surgery.
Bottom line: as of right now, my surgery will be in December. My last day of my college career will be Dec. 17th, so my surgery will happen in the days following. I will most likely be in the hospital on Christmas Day, but I am choosing to look at this in a positive light: I will be getting the gift of life for Christmas. Nothing can top that. Nothing.
Honestly, I'm not really nervous about the surgery itself. I have been through worse when I had spinal fusion surgery. The risks are higher with heart surgery, but pain wise the spinal surgery has to be much, much worse than what I will have to endure for heart surgery. When I had spinal surgery, I had a 14" incision and had two rods literally screwed into my spine. There is no way that heart surgery can be more painful than that! Plus, I've had several other surgeries as well. So the surgery thing isn't new to me and doesn't really scare me. What DOES scare me about this surgery is the fact that my heart will be stopped for several hours. I understand that this is an everyday, routine procedure, but the fact that my heart will be stopped for so long still really gets to me. What also scares me is my anxiety- not about the surgery, but in general. I'm agoraphobic. I rarely leave the house. I get really, really severe panic attacks. How am I supposed to be away from home for a week when I get that anxious?
Either way, it doesn't matter. I don't have a choice. I either go through with the surgery, or I die soon. That may sound pessimistic, but it is the truth. On the bright side, what a New Year it will be. On January 1st, not only will I be a college graduate (I will also be the first person in my immediate family to graduate!!!) but I will be a heart surgery survivor with a new lease on life.
I'm trying so, so hard to stay positive about everything. Despite how scared I am, I have to know that whatever happens, happens. Plus, the more positive I am going into surgery, the quicker I will recover.
I will keep updating as I get more information. Thanks for reading.
On Monday I went back to U of M for several appointments, including finally meeting my heart surgeon, which is what will be the focus of this post.
The appointment began with him going over my latest MRI results with me. He confirmed what I already knew, which is that I need surgery. He DID however have very, very GOOD news to share with me: he is 99% sure that my valve can be saved!!! For those that may not quite understand what the significance of this is, let me explain. The reason that I am having surgery is because I have a large aortic aneurysm. My aorta is a little over double the size that it should be. At one end of the aorta, the end that connects to the heart, there is a valve. More often than not when people have surgery for an aortic aneurysm, they not only have the enlarged part of the aorta replaced, but they also have this valve replaced with either an artificial valve or a pig or cow valve. There are many downsides to having your valve replaced. Most notably, if you get an artificial valve, you have to be on blood thinners for the rest of your life. (If you're not familiar with blood thinners, they suck.) If you have either a pig or cow valve put in, they don't last very long, and you have to have relatively frequent operations to keep replacing it. So, when my surgeon said that my valve can most likely be saved, that is GREAT news!!! It means that after my operation, not only will I not need to be on blood thinners, but, as long as no complications arise, that will be the LAST heart surgery I will have to have! (Hooooooray!!!)
I went to my appointment prepared with questions to ask my surgeon in order to gauge his experience and skill level. Here is the information I gathered from these questions:
-He performs approximately 150-200 operations a year, or 2-3 a week.
-He has operated on about 50-100 patients with Marfan Syndrome (it was very important that I asked this question because patients with Marfans are much harder to operate on-- our hearts tear much easier than those of someone without Marfans, which means he not only has to be that much more careful during surgery, but he has to REALLY know what he is doing!)
-There is a 2% mortality rate
-He is not registered with the Marfan foundation, but he has given lectures regarding Marfan Syndrome and has a lot of experience with Marfan patients.
-The surgery I need to have lasts approximately six hours
-It will take about three months for my bone to heal (my sternum, because they have to literally saw it in half in order to gain access to my heart)
-I should be feeling back to normal within two months
When I asked my surgeon when he thinks surgery will be, he initially said within three months. He could tell I was upset by this, so he asked why. I explained how I wanted to wait until after I graduate from WMU to have my operation, which will be in roughly nine months. When I told him this, he was either hesitant about it or just thinking it through- either way, it took him a little while to agree to waiting that long. He said that it should be fine as long as I take it easy until then. No problems there- I'm bed bound about 22 hours a day as it is.
So, I walked away from my appointment feeling really good. Not only can my valve be saved, but I can graduate before surgery! All good things, right? Well, the following day I started having second thoughts about waiting so long. I began talking to people in a heart surgery support group and a Marfan support group. I also contacted one of my old professors who teaches in WMU's medical school to get her advice. Finally, I posted about my dilemma on Facebook. Aside from about 2 or 3 people, EVERYONE agreed that I SHOULD NOT wait nine months for surgery, but should have it as soon as possible. Reasons given were that it is too risky to wait- my aorta is a ticking time bomb, and a degree is worthless if I'm dead. Additionally, the longer I wait, the more likely it is that my valve will NOT be able to be saved. People also suggested that I might struggle with school because I will be so stressed out about the upcoming surgery.
Hearing everyone almost unanimously agree that I should NOT wait until I graduate to have surgery, I began to get really anxious and stressed out. Yes, school means so, so much to me. Yes, I want to graduate before surgery because of the possible cognitive complications I will have after surgery that would hinder my academic performance. And yes, I even had some morbid thoughts- if I were to die during surgery, I at LEAST wanted to know that I had accomplished something in my life, namely, getting my degree.
On the other hand, everyone's concerns really got to me. I thought maybe I should cancel my Summer II classes and have surgery then, or maybe continue with my Summer I and Summer II classes but cancel my Fall classes so that I can have surgery then. Or, maybe I should just finish my current semester and THEN have surgery. Well, I decided to contact my surgeon. I spoke with his nurse and voiced my concerns. She said that despite what everyone is saying, HE is the doctor, and if he said it would be okay to wait nine months, then it is okay. Additionally, if he thought there was risk involved in waiting the nine months, he would've said so. I should trust the surgeon, he is the expert. She also suggested that instead of waiting until November to have my CT scan, that I should have it earlier if it will give me peace of mind that my aorta is stable. Despite all of this, I still wanted her to voice my concerns to my surgeon, and I am still waiting to hear back on that.
I also got back in touch with the nurse at the Marfan Foundation. I explained everything to her to get her advice on what I should do. I also sent her the results from my latest MRI which included exact measurements of my aorta. She discussed all of this and showed my MRI results to one of the Marfan Foundation's doctors, and this is what he said: "As discussed I forwarded the MRI results and images that you provided to one of our cardiology experts. Based on the information provided he thinks that you could wait the nine months saying that it seems to him that you might be able to wait even longer." Additionally, the nurse I spoke to suggested that I ask my surgeon specifically how many valve sparing procedures he has performed, which is a question I did not think to ask him. Again, still waiting to hear his response. (my surgeon is understandably busy, so I will probably hear back next week.)
SO, where does this leave me? Despite the many, many people who have voiced concerns about waiting nine months for my operation (and I can't ever express my gratitude for all of these people weighing in on the matter and giving me advice), the fact that both my surgeon and the Marfan Foundation's nurse and doctor state that it would be okay to wait nine months has to show me that it really is okay to wait that long for surgery. The surgeon obviously knows what he is talking about, and the people at the Marfan Foundation are experts in Marfan Syndrome, especially the cardiac aspects of it. These people know what they are talking about. I trust them.
Instead of waiting until November to have my CT scan, I will probably have it in four months. If my aorta shows growth, surgery will be pushed up. If it remains stable, I will wait until after graduation so have surgery.
Bottom line: as of right now, my surgery will be in December. My last day of my college career will be Dec. 17th, so my surgery will happen in the days following. I will most likely be in the hospital on Christmas Day, but I am choosing to look at this in a positive light: I will be getting the gift of life for Christmas. Nothing can top that. Nothing.
Honestly, I'm not really nervous about the surgery itself. I have been through worse when I had spinal fusion surgery. The risks are higher with heart surgery, but pain wise the spinal surgery has to be much, much worse than what I will have to endure for heart surgery. When I had spinal surgery, I had a 14" incision and had two rods literally screwed into my spine. There is no way that heart surgery can be more painful than that! Plus, I've had several other surgeries as well. So the surgery thing isn't new to me and doesn't really scare me. What DOES scare me about this surgery is the fact that my heart will be stopped for several hours. I understand that this is an everyday, routine procedure, but the fact that my heart will be stopped for so long still really gets to me. What also scares me is my anxiety- not about the surgery, but in general. I'm agoraphobic. I rarely leave the house. I get really, really severe panic attacks. How am I supposed to be away from home for a week when I get that anxious?
Either way, it doesn't matter. I don't have a choice. I either go through with the surgery, or I die soon. That may sound pessimistic, but it is the truth. On the bright side, what a New Year it will be. On January 1st, not only will I be a college graduate (I will also be the first person in my immediate family to graduate!!!) but I will be a heart surgery survivor with a new lease on life.
I'm trying so, so hard to stay positive about everything. Despite how scared I am, I have to know that whatever happens, happens. Plus, the more positive I am going into surgery, the quicker I will recover.
I will keep updating as I get more information. Thanks for reading.