It has been awhile since I have posted anything here mostly because for the most part I have had nothing new to report. As my last post stated, my MRI showed that my aorta had not grown at all, so surgery was put on the backburner. However, one thing persisted, and even got worse: my dizziness. I have really bad episodes of vertigo, and I am always so unsteady and light headed that it is really hard for me to stand or walk, which makes me bedbound the majority of the time. I went back to my cardiologist for this in December, and we came to the conclusion that I should go to University of Michigan hospital to have a group of specialists review my case and figure out what the best treatment would be.
Well, that trip to U of M happened yesterday. I met with an arrhythmia specialist, a congenital heart defects specialist, a geneticist, and had an echo-cardiogram done. What a day it was. I left the house at 6am, drove 2 hours to Ann Arbor, had my first appointment at 815, then immediately afterwards had my second appointment, and immediately after that had my third. As I was waiting for the doctor to see me, I found out that my grandma died. Not only that, but I found out on my own via Facebook. Nobody in my family told me of her death, and they also decided not to tell me about the funeral (which already happened!) So I was both grief stricken, pissed off, feeling guilty, and a whole other conglomeration of feelings. By the time the doctor came in the exam room, I was crying. About thirty minutes later, I was informed that it was advised I see a heart surgeon. So to recap: In the course of 30 minutes I learned of both my grandmother's passing and that it is time to get the ball rolling on heart surgery.
After that appointment, I saw a geneticist, and immediately after that I went for my echo-cardiogram. After that I was FINALLY cleared to leave (I was at the hospital a total of 6 1/2 hours with no breaks in between appointments.) Let us also remember that I have horrific anxiety and panic attacks to the point that I do not leave my house except like 2 or 3 times a month. Despite taking Valium yesterday, I had more panic attacks than I can remember while on the way to the hospital and at the hospital. All in all, it was an awful day. But on the plus side, everyone I met yesterday was amazing. I have a great set of doctors, nurses, etc. working with me at U of M. I met more people than I can count yesterday!
So, fast forward a few hours, I got home late in the afternoon. Shortly afterwards U of M called me and informed me that I will be getting a call soon to set up an appointment with a heart surgeon. Well, that call came today. The lady I spoke with informed me that a group of doctors reviewed the echo-cardiogram I had yesterday and all agreed it is time to meet with a surgeon. I go and meet my surgeon next week Tuesday. The appointment is again in Ann Arbor. Immediately after my appointment with the heart surgeon I have another appointment with a geneticist because I need to have testing done. I hope to God that my insurance covers all of this....
I have been on the phone and in contact with people most of the day today regarding my surgery. I have been in contact with U of M, the Marfan Foundation, and a myriad of people who have already undergone the surgery I need to have. I am so thankful for all of the people who have provided me support and also informed me of what to expect before, during, and after my surgery.
I do not have a surgery date yet, but I might have that next week. I am hoping that my surgery can be put off until after I graduate college. I am so close to graduating and I would absolutely hate to have my surgery delay that. Especially since I have heard a lot about so-called "pump head," which is a condition some people get after being put on the heart bypass machine (it is what I will need to be put on since my heart will have to be stopped for the majority of the surgery.) Apparently pump head can cause significant cognitive impairment. It doesn't happen to all people who are put on bypass, but it happens to quite a few. (you can read more about pump head here: http://heartdisease.about.com/cs/bypasssurgery/a/pumphead.htm ) My intelligence is something I take pride in. It is one of the only things I have. If that was taken away from me, I don't know what I would do, especially if it negatively impacted my grades.
So anyway, that's all the info I have as of now. I am terrified of surgery, sad/mad/guilty about my grandma's death, and overwhelmed with school (I had already gotten behind because a month ago I had my wisdom teeth taken out; now I have a ton of things on my plate which are stressing me out and preventing me from performing my best at school.)
I'll update again after my appointment next Tuesday.
Well, that trip to U of M happened yesterday. I met with an arrhythmia specialist, a congenital heart defects specialist, a geneticist, and had an echo-cardiogram done. What a day it was. I left the house at 6am, drove 2 hours to Ann Arbor, had my first appointment at 815, then immediately afterwards had my second appointment, and immediately after that had my third. As I was waiting for the doctor to see me, I found out that my grandma died. Not only that, but I found out on my own via Facebook. Nobody in my family told me of her death, and they also decided not to tell me about the funeral (which already happened!) So I was both grief stricken, pissed off, feeling guilty, and a whole other conglomeration of feelings. By the time the doctor came in the exam room, I was crying. About thirty minutes later, I was informed that it was advised I see a heart surgeon. So to recap: In the course of 30 minutes I learned of both my grandmother's passing and that it is time to get the ball rolling on heart surgery.
After that appointment, I saw a geneticist, and immediately after that I went for my echo-cardiogram. After that I was FINALLY cleared to leave (I was at the hospital a total of 6 1/2 hours with no breaks in between appointments.) Let us also remember that I have horrific anxiety and panic attacks to the point that I do not leave my house except like 2 or 3 times a month. Despite taking Valium yesterday, I had more panic attacks than I can remember while on the way to the hospital and at the hospital. All in all, it was an awful day. But on the plus side, everyone I met yesterday was amazing. I have a great set of doctors, nurses, etc. working with me at U of M. I met more people than I can count yesterday!
So, fast forward a few hours, I got home late in the afternoon. Shortly afterwards U of M called me and informed me that I will be getting a call soon to set up an appointment with a heart surgeon. Well, that call came today. The lady I spoke with informed me that a group of doctors reviewed the echo-cardiogram I had yesterday and all agreed it is time to meet with a surgeon. I go and meet my surgeon next week Tuesday. The appointment is again in Ann Arbor. Immediately after my appointment with the heart surgeon I have another appointment with a geneticist because I need to have testing done. I hope to God that my insurance covers all of this....
I have been on the phone and in contact with people most of the day today regarding my surgery. I have been in contact with U of M, the Marfan Foundation, and a myriad of people who have already undergone the surgery I need to have. I am so thankful for all of the people who have provided me support and also informed me of what to expect before, during, and after my surgery.
I do not have a surgery date yet, but I might have that next week. I am hoping that my surgery can be put off until after I graduate college. I am so close to graduating and I would absolutely hate to have my surgery delay that. Especially since I have heard a lot about so-called "pump head," which is a condition some people get after being put on the heart bypass machine (it is what I will need to be put on since my heart will have to be stopped for the majority of the surgery.) Apparently pump head can cause significant cognitive impairment. It doesn't happen to all people who are put on bypass, but it happens to quite a few. (you can read more about pump head here: http://heartdisease.about.com/cs/bypasssurgery/a/pumphead.htm ) My intelligence is something I take pride in. It is one of the only things I have. If that was taken away from me, I don't know what I would do, especially if it negatively impacted my grades.
So anyway, that's all the info I have as of now. I am terrified of surgery, sad/mad/guilty about my grandma's death, and overwhelmed with school (I had already gotten behind because a month ago I had my wisdom teeth taken out; now I have a ton of things on my plate which are stressing me out and preventing me from performing my best at school.)
I'll update again after my appointment next Tuesday.