With just over 3 days to go until surgery, I thought I would take some time to post something. This will likely be my last post until after surgery.
A lot has happened since I posted last, and for those of you who have been monitoring my situation I apologize that I have not posted in such a long time. First and foremost, my surgery is scheduled for January 10th at 7am. It is nice to finally have a set date because my surgery has actually been rescheduled 3 times now, which has caused a lot of stress and uncertainty. But all of the pre-op tests have been conducted, I've met with my surgeon, and everything is good to go for next week.
A couple weeks ago I had a marathon day of appointments. I ended up spending 9 hours at the hospital in back-to-back pre-op appointments, one of which was my CT scan. The results from that scan are not good; my aorta has grown significantly since last checked a year and a half ago. To be exact, it has grown a full centimeter. I know that doesn't sound like much, but it is. Consider this: the normal size for an aortic root is somewhere around 3cm. My aortic root is now 5.2cm. Surgery is recommended when your aorta is between 4.5cm and 5cm.. so I have surpassed that level, which is incredibly dangerous. Think of a balloon. The more air you put into it, the larger it grows. Eventually it will pop. That is quite literally what I am currently facing with my aorta, and it is on the verge of popping. If it does, it is usually lethal. And there are no warning signs of rupture, either... it will just happen. So I need to have surgery ASAP to prevent this, and ultimately my death, from happening.
Below are the results of my CT scan. For most of you, these numbers will not make sense, but since I am creating this blog with the goal of helping fellow Marfs who are also facing heart surgery in their future, these numbers will be helpful as a tool for comparison (All results are in MM):
Sinus 52.3
SAJ 47.5
Mid Ascending 33.1
Proximal Arch 27.7
Mid-Arch 22.6
2cm Distal LCCA 28.1
2cm Distal LSC 28
Mid Descending 20.5
2cm above Celiac 20.4
Celiac ?20.9
SMA 19.6
Superior Renal 20
Inferior Renal ?16.4
15 mm Below Renals 16
Aortic Bifurcation 15
Rt Common Iliac Max 11.1
Rt Common Iliac Min 8.8
Rt External Iliac Min 5.8
Rt Femoral 6.9
Lt Common Iliac Max 11.2
Lt Common Iliac Min 8.6
Lt External Iliac Min 5.9
Lt Femoral 8.1
S of V RCA 46.2
S of V LCA 49
S of V Non 46.8
What these numbers show is that all of my aortic arch, descending aorta, and abdominal aorta are normal in size. However, my root and part of my ascending aorta are enlarged. The CT also revealed that I have dural ecstasia in my sacrum which comes as a surprise to me. I have had so many CT scans and MRI's in my lifetime, and none of them have revealed that--or at least whomever reviewed my scans did not mention it in their findings. I am wondering if this could be a cause of some of the lower back pain I experience? It is something to look into.
So many of you know that I am having heart surgery, but you really don't know what exactly I am having done or what all is involved. I thought I would briefly try and describe everything so that there is more understanding.
Contrary to what most people have done when having surgery for a thoracic aortic aneurysm, I am not getting a valve. Instead, my valve is healthy so I will be having a valve-sparing (David) procedure performed. What does that mean? The part of my aorta with the aneurysm is cut out and replaced with a Dacron graft, but instead of a valve on the end of the graft, my own valve is sewn into the bottom. This is the best option anyone could hope for because mechanical and tissue valves are rather high maintenance. Mechanical valves require you to be on blood thinners for the rest of your life, and tissue valves--rather bovine, swine, or human--only last several years, which would mean I would need recurring heart surgeries. So the fact that I can keep my own valve is very good news.
A lot has happened since I posted last, and for those of you who have been monitoring my situation I apologize that I have not posted in such a long time. First and foremost, my surgery is scheduled for January 10th at 7am. It is nice to finally have a set date because my surgery has actually been rescheduled 3 times now, which has caused a lot of stress and uncertainty. But all of the pre-op tests have been conducted, I've met with my surgeon, and everything is good to go for next week.
A couple weeks ago I had a marathon day of appointments. I ended up spending 9 hours at the hospital in back-to-back pre-op appointments, one of which was my CT scan. The results from that scan are not good; my aorta has grown significantly since last checked a year and a half ago. To be exact, it has grown a full centimeter. I know that doesn't sound like much, but it is. Consider this: the normal size for an aortic root is somewhere around 3cm. My aortic root is now 5.2cm. Surgery is recommended when your aorta is between 4.5cm and 5cm.. so I have surpassed that level, which is incredibly dangerous. Think of a balloon. The more air you put into it, the larger it grows. Eventually it will pop. That is quite literally what I am currently facing with my aorta, and it is on the verge of popping. If it does, it is usually lethal. And there are no warning signs of rupture, either... it will just happen. So I need to have surgery ASAP to prevent this, and ultimately my death, from happening.
Below are the results of my CT scan. For most of you, these numbers will not make sense, but since I am creating this blog with the goal of helping fellow Marfs who are also facing heart surgery in their future, these numbers will be helpful as a tool for comparison (All results are in MM):
Sinus 52.3
SAJ 47.5
Mid Ascending 33.1
Proximal Arch 27.7
Mid-Arch 22.6
2cm Distal LCCA 28.1
2cm Distal LSC 28
Mid Descending 20.5
2cm above Celiac 20.4
Celiac ?20.9
SMA 19.6
Superior Renal 20
Inferior Renal ?16.4
15 mm Below Renals 16
Aortic Bifurcation 15
Rt Common Iliac Max 11.1
Rt Common Iliac Min 8.8
Rt External Iliac Min 5.8
Rt Femoral 6.9
Lt Common Iliac Max 11.2
Lt Common Iliac Min 8.6
Lt External Iliac Min 5.9
Lt Femoral 8.1
S of V RCA 46.2
S of V LCA 49
S of V Non 46.8
What these numbers show is that all of my aortic arch, descending aorta, and abdominal aorta are normal in size. However, my root and part of my ascending aorta are enlarged. The CT also revealed that I have dural ecstasia in my sacrum which comes as a surprise to me. I have had so many CT scans and MRI's in my lifetime, and none of them have revealed that--or at least whomever reviewed my scans did not mention it in their findings. I am wondering if this could be a cause of some of the lower back pain I experience? It is something to look into.
So many of you know that I am having heart surgery, but you really don't know what exactly I am having done or what all is involved. I thought I would briefly try and describe everything so that there is more understanding.
Contrary to what most people have done when having surgery for a thoracic aortic aneurysm, I am not getting a valve. Instead, my valve is healthy so I will be having a valve-sparing (David) procedure performed. What does that mean? The part of my aorta with the aneurysm is cut out and replaced with a Dacron graft, but instead of a valve on the end of the graft, my own valve is sewn into the bottom. This is the best option anyone could hope for because mechanical and tissue valves are rather high maintenance. Mechanical valves require you to be on blood thinners for the rest of your life, and tissue valves--rather bovine, swine, or human--only last several years, which would mean I would need recurring heart surgeries. So the fact that I can keep my own valve is very good news.
During the operation, my heart and breathing are stopped so that my surgeon can have a motionless and bloodless area to work on. Instead, I will be hooked up to a cardiopulmonary bypass machine (heart-lung machine). This machine will warm and oxygenate my blood, as well as keep it circulating throughout my body. Below is a picture of that machine.
The CPB machine is perhaps the biggest risk of surgery. Obviously, your blood is not used to circulating through plastic tubing. Thus, your body tries to "protect" itself from the abnormality by initiating an inflammatory response. Moreover, it is not uncommon for small blood clots to form in the bloodstream or for small air bubble to be created in the blood, which can be potentially catastrophic. Most notably, however, the CPB machine is known for causing "pump head", which is temporary or permanent cognitive decline.
After surgery, I will wake up on the ventilator. Because, you know, nothing says fun like waking up with a tube down your throat. After I am able to start breathing on my own, that tube will be removed. Other tubes that I will have in place include chest drainage tubes and a swan-ganz catheter. The chest tubes are inserted immediately after surgery. One end of the tubes are placed right around my heart and the other ends will come out just below my incision near my diaphragm.
After surgery, I will wake up on the ventilator. Because, you know, nothing says fun like waking up with a tube down your throat. After I am able to start breathing on my own, that tube will be removed. Other tubes that I will have in place include chest drainage tubes and a swan-ganz catheter. The chest tubes are inserted immediately after surgery. One end of the tubes are placed right around my heart and the other ends will come out just below my incision near my diaphragm.
The chest tubes are removed when I am awake--usually around day 2 or so.
The swan-ganz catheter is inserted prior to surgery (after i'm asleep). It is inserted into my jugular (neck) vein and "snaked" down into my heart. Again, this is removed after I am awake, and I can only imagine how that will feel....
The swan-ganz catheter is inserted prior to surgery (after i'm asleep). It is inserted into my jugular (neck) vein and "snaked" down into my heart. Again, this is removed after I am awake, and I can only imagine how that will feel....
I will also have pacer wires to deal with. These are inserted just after surgery but while I am still asleep, and are removed again around day 2. The wires wrap around my heart and stick out of my body around where the chest tubes are placed. I've been told by many that pacer wires hurt really badly when they get removed, but we'll see.
So, that's what I get to look forward to next week! Honestly, I'm not really that worried about the surgery itself. The only thing that scares me is the whole heart-lung machine. Other than that, I have been through several surgeries already. Although I know this will be painful (after all they have to literally saw my sternum in half) I've been through worse with my spinal surgery. For that, I had an incision that went down my entire back. This incision will be much smaller than that.
The one thing that I'm really nervous about is my anxiety in general, completely unrelated to the surgery. If you know me, you know I suffer from chronic anxiety and panic attacks. If I am not at home I undergo constant panic attacks. So the thought of being away from home for a week is what gets me the most. I don't mind the surgery, I don't mind hospitals.. I just mind my anxiety. I'm hoping they can just pump me full of anti-anxiety meds the whole time i'm there! Then everything will be just fine and dandy :)
As far as visitors go, I completely understand if people don't visit me since it is all the way in Ann Arbor. If you do decide to come visit, they are pretty lenient with visiting hours. I won't be in the main hospital, but in the new cardiovascular center. It is attached to the hospital but really it is a separate building.
The number to call to get info or contact me is 734-936-4000. The number for the gift shop (because I like presents) is 734-936-5975.
I am beyond nervous about the whole situation. This operation is literally saving my life. At the same time, it will not help any of my phsyical symptoms that I currently deal with. I don't think a lot of people realize this either. The physical symptoms I currently have are unrelated to my heart; my aortic aneurysm produces no symptoms. So after surgery I will not feel any better physicall (unfortunately). Mentally, it will be a HUGE relief to not worry about my heart exploding anymore, as it is currently a ticking time bomb.
I am also under the impression that I will be able to exercise after surgery! All my life I have been restricted from doing so because it was too risky with my heart. So hopefully once I am healed up I can become active and start losing some weight!
Life is definitely about to change, and it is all quite overwhelming to think about. I just can't wait to get this all over with! See you on the other side <3
Leesa
The one thing that I'm really nervous about is my anxiety in general, completely unrelated to the surgery. If you know me, you know I suffer from chronic anxiety and panic attacks. If I am not at home I undergo constant panic attacks. So the thought of being away from home for a week is what gets me the most. I don't mind the surgery, I don't mind hospitals.. I just mind my anxiety. I'm hoping they can just pump me full of anti-anxiety meds the whole time i'm there! Then everything will be just fine and dandy :)
As far as visitors go, I completely understand if people don't visit me since it is all the way in Ann Arbor. If you do decide to come visit, they are pretty lenient with visiting hours. I won't be in the main hospital, but in the new cardiovascular center. It is attached to the hospital but really it is a separate building.
The number to call to get info or contact me is 734-936-4000. The number for the gift shop (because I like presents) is 734-936-5975.
I am beyond nervous about the whole situation. This operation is literally saving my life. At the same time, it will not help any of my phsyical symptoms that I currently deal with. I don't think a lot of people realize this either. The physical symptoms I currently have are unrelated to my heart; my aortic aneurysm produces no symptoms. So after surgery I will not feel any better physicall (unfortunately). Mentally, it will be a HUGE relief to not worry about my heart exploding anymore, as it is currently a ticking time bomb.
I am also under the impression that I will be able to exercise after surgery! All my life I have been restricted from doing so because it was too risky with my heart. So hopefully once I am healed up I can become active and start losing some weight!
Life is definitely about to change, and it is all quite overwhelming to think about. I just can't wait to get this all over with! See you on the other side <3
Leesa