So much has happened in the past eight days that it feels unreal. Between surgery, learning that my aorta had already dissected and I shouldn't be alive, and spending six days in the hospital, there is so much to tell. But I'm getting ahead of myself. Honestly, I don't really know where to begin. So I guess I'll start from the only place I know how: the very beginning.
The morning of my surgery we experienced a snow storm. It was not a typical snow storm that falls in the snow belt areas of lower Michigan, either. It covered all of lower Michigan from the West side of the state to the East side. Thus, the entire drive to Ann Arbor was TERRIFYING. From Kalamazoo to Ann Arbor, we saw a total of three snow plows. THREE. My mom said she has never seen the highways THAT bad on a weekday morning. There was a good three-to-four inches of snow on the highway the entire distance. By the time we reached the hospital, my mom's arms and hands hurt from grabbing the steering wheel so hard. So, obviously the drive there was stressful. But it was even more stressful because I knew that I was about go to have heart surgery. Everyone in the car was a nervous wreck.
Somehow, we managed to get to the hospital on time. Unfortunately, when we got there, I got sick and was in the bathroom for a good 20 minutes. When I finally checked in, I was beyond nervous and my dizziness was kicking into high gear. They began the onslaught of questions and began the prep work (getting an IV started, etc.). Next thing I knew it was 7am and the anesthesiologist was there to talk to me.
Think of your greatest fear. Heights, snakes, rollercoasters, whatever. Then imagine you are about to be forced to confront this fear. Either you have to skydive, be in a pit of snakes, or go on the world's tallest rollercoaster. That feeling you get that is an overwhelming sense of wanting to back out? That's what I felt. Right before they took me back it was so hard to watch my mom cry, and Larry knelt over me to pray. Next thing I knew, they began to roll me back through a maze of hallways until we entered the OR.
As soon as I entered the OR, it wasn't as cold as I remember other ORs to be. The first thing I noticed, however, was how many people were in there. It was like a mini city! Next, its weird.. I remember but happened but I can't begin to explain it. My guess is it is because the anesthesia had been started. There was no countdown or anything, though, just preparing my body. The next thing I remember was being in the ICU on the ventilator, hardly able to breathe.
If you asked me to describe my surroundings in detail, I couldn't. But I do remember being wide awake (albeit drugged). This was surprising to me because almost every one I had talked to that had had heart surgery before stated they have no memory not only of the ventalator, but no memory of being in the ICU. I remember it well. First of all, I had two tubes down my throat. It felt like I was breathing through a straw. My arms were so weak I could not move them. I felt like I was gasping for air not because I couldn't breath, but because the tubes were so thin. Usually--at least as far as I've been told--people are taken off of the vent the night of surgery (granted surgery happens in the AM). I ended up on the vent until the next morning. So there I sat, gasping for air with tubes down my throat. Every time I swallowed it hurt like hell and triggered my gag reflex. In fact, in one instance they repositioned my body, which caused the tubes to move in my throat, and I threw up all over the place. It's somewhat shocking that didn't cause me to asperate. I threw up a second time when they took the vent out.
I was in the ICU for a day and then moved to the stand down unit. There, I was still drugged and weak enough that I couldn't move or talk, but awake enough mentally that I could feel the pain and be pissed off. And that's exactly what I was: pissed. I couldn't communicate what I wanted, couldn't do what I wanted. I was starving and so thirsty but couldn't eat or drink, yet I would see others eating and drinking. I joke that if I was strong enough to lift my arms, I would have punched many people in those first few days! It was maddening!
The third day (I think it was the third but it might have been the second) I got a new roommate in my room. In the beginning, this was the kind of news that made me really, really mad. I am not a fan of semi-private rooms and did not want anyone to be that close to me. However, it turned out to be a huge blessing. The woman who was placed beside me, Connie, is someone whom I now consider to be family. Her daughters would also visit her every day so I consider them family as well. I honestly have no idea how I would have gotten through this whole ordeal without her. The second we met we "clicked". We would spend large amounts of our days in the hospital laughing and joking. Connie, I love you from the bottom of my fixed heart!!
Although I had a lot of good, quality nurses, I also had to undergo some pretty awful experiences. It seemed as though nobody in that place communicated with one another. Moreover, when my surgeon would come visit me he would tell me one thing (such as what pain meds I could have) and then the nurses, when I brought it up to them, completely contradicted him and said "no." For about two days the only pain meds I was on were two tylenols. Also, the first couple days I was repeatedly telling my mom and her boyfriend to kill me, and I meant it. I was absolutely miserable. Luckily enough for me, I was also still pretty out of it from the anesthesia so I don't remember a whole lot of that. It's just one big blurry, horrific memory.
The hospital bed I was in was WAY too small. I'm 6' tall and this one needed to be extended another 6" or so for me to be comfortable. The bed was also incredibly old so the mattress was completely worn out. Combine that with my anxiety and I barely slept the entire time I was in the hospital. In fact, the only times I was able to sleep is if they gave me pain pills. I would sleep 4 or 5 hours a day.
The swan ganz catheter (in my neck) and my urinary catheter did not hurt when they got pulled. In fact, I didn't feel anything at all which I found odd. The chest tubes were a different story entirely. The doctor that pulled them told me it would feel like an "internal rug burn" but really it felt like internal hell. And they were stuck in there pretty good.. he had to yank on them to get them out. After they are out, he had to tie the sutures around them which pinched really badly. He told me it would hurt for 10 minutes, it hurt for an hour and then I had to give in and take a pain pill.
The pacer wires did not really hurt. It felt string being pulled out of your body. What you imagine when you think of that is exactly how it feels. The first one had no pain, the second one had a little pinch and made my heart flutter for a bit, but other than that it was no problem. I didn't get my pacer wires pulled until several hours before I was released. After they are pulled, you have to lie down for 30 minutes and then be closely monitored for 4 hours.
It is also worth noting that, because of Marfan Syndrome, my veins are very small. I had to get my blood drawn every day which was kind of a nightmare. People had to poke me repeatedly and then get another person to try. My hands and arms are beyond bruised. Plus that, my IVs kept going bad. Normally, the vein that is used for IV access is pretty darn near the surface of your skin. Mine are not only small, but deep. It got to the point where they had to start performing ultra sounds on my arm to find a vein to hook up to an IV, and then instead of using a smaller needle, they had to use a large needle and stick it in my arm an inch or an inch and a half. All with NO numbing of any kind. It. Was. BAD.
Overall, I would say that half of my experience was wonderful (largely thanks to my hospital roomie) and the other half was pretty bad. But, here I sit, in my own bed, more than a week after surgery and I am doing pretty well. Really my only problem is that my blood pressure and heart rate have been pretty high, but that can be fixed by adjusting my heart meds.
Now for the scary part about this whole thing. Since my surgery was scheduled and not an emergency, it was considered an "elective" surgery. Yes, my aneurysm was very large, but it had not dissected so it was not worthy of being taken to the hospital in an ambulance and having an emergency procedure. So, as far as everyone knew, this was just a routine, elective surgery. Oh how very wrong everyone was.
Once they opened me up, my surgeon saw that my aorta had already dissected. Where my aorta connected to my aortic valve, it had ripped in several places leaving huge holes. There was an immense amount of internal bleeding. Moreover, my aorta was so thin that my surgeon was not even able to get a stitch through it. When the surgery was over with and he came out and talked to my mom, he said that he had no idea how I am alive and credits my survival with the fact that "God must love me". He also commented that I should have had this surgery last year, and that, obviously, more of my aorta had to be replaced than expected. However, he finished with good news: that my heart will be good for many years. Additionally, as planned, he was able to keep my own valve which eliminates a bunch of future problems and annoyances.
When my mom told me the news about how my aorta had already dissected, I couldn't believe it. I shouldn't be alive. I shouldn't be here. And yet I am. Why? How do things work out like that? Like, nobody knows how long before surgery the dissection started. The whole situation is just crazy. I should be dead. I'm not. I'm alive. I have to take advantage of this second chance at life. I cannot waste it. With all of this information, I was absolutely overwhelmed. Then, while in the hospital, I was told by my department chair at WMU that faculty voted and chose me to receive the Presidential Scholar Award--which is "the top undergraduate award at WMU." I couldn't believe it when I heard it. It was exactly the right kind of uplifting news I needed to hear. Plus, what a way to begin my second chance at life!!!
Overall, I cannot believe the whole experience is done. I know I still have a long recovery behind me, but to think that this surgery--the one that I've known I would have to undergo since I was 10 years old--is finally over with, I cannot even explain how that makes me feel.
If you have Marfan Syndrome and have not yet had heart surgery, please know that I think you should choose to have the surgery early. Like when your aorta is 4.5cm. They told me I would be fine until I was at 5 cm but obviously I waited too long and it is nothing but a miracle that I am still here. Please, please please, start considering and planning for surgery when your aorta reaches 4.5.
As for how the whole surgery experience is, it is not easy. I'm not going to sugar coat it. In fact, it was really, really hard. But... and I know this is cliche as all hell, if I can do it, ANYONE can do it. And that is the TRUTH. My anxiety and panic attacks are so bad that I literally do not leave the house except to go to doctor appointments, and I must be accompanied to those appointments. I don't drive because I'm too panicky. I am also really unhealthy to begin with, as I have several medical problems in addition to my heart troubles and Marfan Syndrome. I thought for sure if anyone would not recover well from surgery (or even god forbid die) it would've been me. I was in horrible shape before surgery (I still am). Yet I DID IT. Every time I got terrified or anxious, I would find myself saying "I don't know how I can do this." And then like a minute later I would tell myself "One step at a time." And that is all you can do: take things one step at a time.
I am not the most religious person. I am more spiritual than religious in the sense that I don't prescribe to all of the religious doctrines or rituals of any one religion. However, I am a firm believer in God. (I tend to think there is only one God.. the same God for each religion.. but that's a different topic for a different time). You must put your faith in God. Not going to lie, the day before surgery I broke down and cried so much that I made myself sick. I prayed and prayed for him to help me. He did.
If you're not a religious person (or spiritual for that matter) you must try to keep an optimistic attitude. And even if that fails, luckily your surgeon and team of doctors do know what they are doing. You must put trust in them. And put a little faith in yourself, too. Again, If I just got threw a major surgery such as aortic aneurysm replacement, then things look pretty good for ANYONE to get through that surgery.
I want to thank EVERYONE who supplied me with constant support, love, and encouragement. You all know who you are. Your support has been worth more to me than you know. And Connie, if you're reading this, I love you. I am being completely honest when I say I don't know how I would have been able to do this without you. I can only hope that you and your daughters will be a part of my life for the rest of my life.
Below are just a variety of pictures that were taken during my hospital stay. I was going to get pictures of chest tubes and pacer wires and all that, but I never did (sorry). But if you're interested in what they look like--or even the procedure of getting them pulled--some people have posted videos of it on Youtube available for all to see!!!
I will continue to update my progress. I go back to Ann Arbor for a post op appointment in three weeks.
I love you all <3
Leesa
The morning of my surgery we experienced a snow storm. It was not a typical snow storm that falls in the snow belt areas of lower Michigan, either. It covered all of lower Michigan from the West side of the state to the East side. Thus, the entire drive to Ann Arbor was TERRIFYING. From Kalamazoo to Ann Arbor, we saw a total of three snow plows. THREE. My mom said she has never seen the highways THAT bad on a weekday morning. There was a good three-to-four inches of snow on the highway the entire distance. By the time we reached the hospital, my mom's arms and hands hurt from grabbing the steering wheel so hard. So, obviously the drive there was stressful. But it was even more stressful because I knew that I was about go to have heart surgery. Everyone in the car was a nervous wreck.
Somehow, we managed to get to the hospital on time. Unfortunately, when we got there, I got sick and was in the bathroom for a good 20 minutes. When I finally checked in, I was beyond nervous and my dizziness was kicking into high gear. They began the onslaught of questions and began the prep work (getting an IV started, etc.). Next thing I knew it was 7am and the anesthesiologist was there to talk to me.
Think of your greatest fear. Heights, snakes, rollercoasters, whatever. Then imagine you are about to be forced to confront this fear. Either you have to skydive, be in a pit of snakes, or go on the world's tallest rollercoaster. That feeling you get that is an overwhelming sense of wanting to back out? That's what I felt. Right before they took me back it was so hard to watch my mom cry, and Larry knelt over me to pray. Next thing I knew, they began to roll me back through a maze of hallways until we entered the OR.
As soon as I entered the OR, it wasn't as cold as I remember other ORs to be. The first thing I noticed, however, was how many people were in there. It was like a mini city! Next, its weird.. I remember but happened but I can't begin to explain it. My guess is it is because the anesthesia had been started. There was no countdown or anything, though, just preparing my body. The next thing I remember was being in the ICU on the ventilator, hardly able to breathe.
If you asked me to describe my surroundings in detail, I couldn't. But I do remember being wide awake (albeit drugged). This was surprising to me because almost every one I had talked to that had had heart surgery before stated they have no memory not only of the ventalator, but no memory of being in the ICU. I remember it well. First of all, I had two tubes down my throat. It felt like I was breathing through a straw. My arms were so weak I could not move them. I felt like I was gasping for air not because I couldn't breath, but because the tubes were so thin. Usually--at least as far as I've been told--people are taken off of the vent the night of surgery (granted surgery happens in the AM). I ended up on the vent until the next morning. So there I sat, gasping for air with tubes down my throat. Every time I swallowed it hurt like hell and triggered my gag reflex. In fact, in one instance they repositioned my body, which caused the tubes to move in my throat, and I threw up all over the place. It's somewhat shocking that didn't cause me to asperate. I threw up a second time when they took the vent out.
I was in the ICU for a day and then moved to the stand down unit. There, I was still drugged and weak enough that I couldn't move or talk, but awake enough mentally that I could feel the pain and be pissed off. And that's exactly what I was: pissed. I couldn't communicate what I wanted, couldn't do what I wanted. I was starving and so thirsty but couldn't eat or drink, yet I would see others eating and drinking. I joke that if I was strong enough to lift my arms, I would have punched many people in those first few days! It was maddening!
The third day (I think it was the third but it might have been the second) I got a new roommate in my room. In the beginning, this was the kind of news that made me really, really mad. I am not a fan of semi-private rooms and did not want anyone to be that close to me. However, it turned out to be a huge blessing. The woman who was placed beside me, Connie, is someone whom I now consider to be family. Her daughters would also visit her every day so I consider them family as well. I honestly have no idea how I would have gotten through this whole ordeal without her. The second we met we "clicked". We would spend large amounts of our days in the hospital laughing and joking. Connie, I love you from the bottom of my fixed heart!!
Although I had a lot of good, quality nurses, I also had to undergo some pretty awful experiences. It seemed as though nobody in that place communicated with one another. Moreover, when my surgeon would come visit me he would tell me one thing (such as what pain meds I could have) and then the nurses, when I brought it up to them, completely contradicted him and said "no." For about two days the only pain meds I was on were two tylenols. Also, the first couple days I was repeatedly telling my mom and her boyfriend to kill me, and I meant it. I was absolutely miserable. Luckily enough for me, I was also still pretty out of it from the anesthesia so I don't remember a whole lot of that. It's just one big blurry, horrific memory.
The hospital bed I was in was WAY too small. I'm 6' tall and this one needed to be extended another 6" or so for me to be comfortable. The bed was also incredibly old so the mattress was completely worn out. Combine that with my anxiety and I barely slept the entire time I was in the hospital. In fact, the only times I was able to sleep is if they gave me pain pills. I would sleep 4 or 5 hours a day.
The swan ganz catheter (in my neck) and my urinary catheter did not hurt when they got pulled. In fact, I didn't feel anything at all which I found odd. The chest tubes were a different story entirely. The doctor that pulled them told me it would feel like an "internal rug burn" but really it felt like internal hell. And they were stuck in there pretty good.. he had to yank on them to get them out. After they are out, he had to tie the sutures around them which pinched really badly. He told me it would hurt for 10 minutes, it hurt for an hour and then I had to give in and take a pain pill.
The pacer wires did not really hurt. It felt string being pulled out of your body. What you imagine when you think of that is exactly how it feels. The first one had no pain, the second one had a little pinch and made my heart flutter for a bit, but other than that it was no problem. I didn't get my pacer wires pulled until several hours before I was released. After they are pulled, you have to lie down for 30 minutes and then be closely monitored for 4 hours.
It is also worth noting that, because of Marfan Syndrome, my veins are very small. I had to get my blood drawn every day which was kind of a nightmare. People had to poke me repeatedly and then get another person to try. My hands and arms are beyond bruised. Plus that, my IVs kept going bad. Normally, the vein that is used for IV access is pretty darn near the surface of your skin. Mine are not only small, but deep. It got to the point where they had to start performing ultra sounds on my arm to find a vein to hook up to an IV, and then instead of using a smaller needle, they had to use a large needle and stick it in my arm an inch or an inch and a half. All with NO numbing of any kind. It. Was. BAD.
Overall, I would say that half of my experience was wonderful (largely thanks to my hospital roomie) and the other half was pretty bad. But, here I sit, in my own bed, more than a week after surgery and I am doing pretty well. Really my only problem is that my blood pressure and heart rate have been pretty high, but that can be fixed by adjusting my heart meds.
Now for the scary part about this whole thing. Since my surgery was scheduled and not an emergency, it was considered an "elective" surgery. Yes, my aneurysm was very large, but it had not dissected so it was not worthy of being taken to the hospital in an ambulance and having an emergency procedure. So, as far as everyone knew, this was just a routine, elective surgery. Oh how very wrong everyone was.
Once they opened me up, my surgeon saw that my aorta had already dissected. Where my aorta connected to my aortic valve, it had ripped in several places leaving huge holes. There was an immense amount of internal bleeding. Moreover, my aorta was so thin that my surgeon was not even able to get a stitch through it. When the surgery was over with and he came out and talked to my mom, he said that he had no idea how I am alive and credits my survival with the fact that "God must love me". He also commented that I should have had this surgery last year, and that, obviously, more of my aorta had to be replaced than expected. However, he finished with good news: that my heart will be good for many years. Additionally, as planned, he was able to keep my own valve which eliminates a bunch of future problems and annoyances.
When my mom told me the news about how my aorta had already dissected, I couldn't believe it. I shouldn't be alive. I shouldn't be here. And yet I am. Why? How do things work out like that? Like, nobody knows how long before surgery the dissection started. The whole situation is just crazy. I should be dead. I'm not. I'm alive. I have to take advantage of this second chance at life. I cannot waste it. With all of this information, I was absolutely overwhelmed. Then, while in the hospital, I was told by my department chair at WMU that faculty voted and chose me to receive the Presidential Scholar Award--which is "the top undergraduate award at WMU." I couldn't believe it when I heard it. It was exactly the right kind of uplifting news I needed to hear. Plus, what a way to begin my second chance at life!!!
Overall, I cannot believe the whole experience is done. I know I still have a long recovery behind me, but to think that this surgery--the one that I've known I would have to undergo since I was 10 years old--is finally over with, I cannot even explain how that makes me feel.
If you have Marfan Syndrome and have not yet had heart surgery, please know that I think you should choose to have the surgery early. Like when your aorta is 4.5cm. They told me I would be fine until I was at 5 cm but obviously I waited too long and it is nothing but a miracle that I am still here. Please, please please, start considering and planning for surgery when your aorta reaches 4.5.
As for how the whole surgery experience is, it is not easy. I'm not going to sugar coat it. In fact, it was really, really hard. But... and I know this is cliche as all hell, if I can do it, ANYONE can do it. And that is the TRUTH. My anxiety and panic attacks are so bad that I literally do not leave the house except to go to doctor appointments, and I must be accompanied to those appointments. I don't drive because I'm too panicky. I am also really unhealthy to begin with, as I have several medical problems in addition to my heart troubles and Marfan Syndrome. I thought for sure if anyone would not recover well from surgery (or even god forbid die) it would've been me. I was in horrible shape before surgery (I still am). Yet I DID IT. Every time I got terrified or anxious, I would find myself saying "I don't know how I can do this." And then like a minute later I would tell myself "One step at a time." And that is all you can do: take things one step at a time.
I am not the most religious person. I am more spiritual than religious in the sense that I don't prescribe to all of the religious doctrines or rituals of any one religion. However, I am a firm believer in God. (I tend to think there is only one God.. the same God for each religion.. but that's a different topic for a different time). You must put your faith in God. Not going to lie, the day before surgery I broke down and cried so much that I made myself sick. I prayed and prayed for him to help me. He did.
If you're not a religious person (or spiritual for that matter) you must try to keep an optimistic attitude. And even if that fails, luckily your surgeon and team of doctors do know what they are doing. You must put trust in them. And put a little faith in yourself, too. Again, If I just got threw a major surgery such as aortic aneurysm replacement, then things look pretty good for ANYONE to get through that surgery.
I want to thank EVERYONE who supplied me with constant support, love, and encouragement. You all know who you are. Your support has been worth more to me than you know. And Connie, if you're reading this, I love you. I am being completely honest when I say I don't know how I would have been able to do this without you. I can only hope that you and your daughters will be a part of my life for the rest of my life.
Below are just a variety of pictures that were taken during my hospital stay. I was going to get pictures of chest tubes and pacer wires and all that, but I never did (sorry). But if you're interested in what they look like--or even the procedure of getting them pulled--some people have posted videos of it on Youtube available for all to see!!!
I will continue to update my progress. I go back to Ann Arbor for a post op appointment in three weeks.
I love you all <3
Leesa