With my Marfan Syndrome I get an echocardiogram and see my cardiologist every 6-9 months. This was the first appointment I wasn’t anxious for. I had just come back from my bachelorette weekend and this appointment is always an hour long echocardiogram (Marfan patients will know how awful these can be!) and then seeing my wonderful cardiologist for a check-up and we are out of there. But this one was different.
My husband and I were waiting in the exam room while my cardiologist read my echocardiogram, like every year. But this time she was gone about 20 minutes, which is very abnormal. When she came back we could tell something was wrong. She started started with saying that there had been significant growth in my aorta and it had grown .5cm. My aorta has not grow that much over the last 12 years!! It had to be a mistake we thought, but it was no mistake.
Confusion, sadness, fear, anger, these were just a few emotions we were feeling. We weren’t sure why this happened, but all we know is that it happened. We had to go back for a follow-up MRI to check to make sure the measurement was accurate, but we knew surgery was imminent. Surgery was something I would never need, then it was something I would need in the future, and now it is something that needed to happen ASAP.
This was the first time I saw my doctor concerned and it was the first time I had been truly frightened for my health. So we went for the MRI and OF COURSE they thought they saw an aortic dissection, so I was called in for an urgent CT scan. I drove right from work and was scared beyond belief. My parents and husband met me at the hospital and we had to impatiently wait until we found out that there was no dissection just an enlargement. WELL LET ME TELL YOU WE ALL FREAKED OUT!!!!! But based on that urgent matter, we needed to do surgery ASAP. The surgeon was able to fit me in on November 15th, a SMALL THREE MONTHS UNTIL MY WEDDING! I mean come on! This is something that I need to do now but this timing is just truly unbelievable.
Now starts medical forms, appointments, canceling some wedding things and just getting things together. But also these 3 weeks of waiting are super anxiety ridden.
Now it is time to wait …….