Christina is a woman who has Turner Syndrome, a wife, and a teacher. In this monthly blog series, she shares her experiences living with Turner Syndrome.
This month I would like to shed some light on the recovery process after my surgery to repair my aortic dissection. This is a common issue women and girls who have Turner Syndrome face. You can read my post from last month to learn about how I discovered that I needed open-heart surgery. This was a process that involved me repeatedly telling my doctors that something just wasn’t right.
Moments Before Aortic Dissection Surgery
This event has changed my life. I had no time to plan for or process what was happening because it was so sudden. I went to the urgent care thinking I was dehydrated and needed a saline I-V drip. Next thing I knew, I was told I needed to be taken to the hospital right away for open-heart surgery within an hour. The way they put me in the ambulance was movie-like. My husband saw me on the stretcher being wheeled into surgery as he came running down the hall. We briefly talked to the surgeon and he kissed me. These are the last things I remember before being put under anesthesia.
After the open-heart surgery I was taken to the recovery room, and then I went to one of the cardiac ICU rooms. There, they strictly monitored all of my vitals and I was not allowed to walk. Once I was allowed to eat and walk I went to a regular cardiac room. In this room I could eat anything I wanted and walk around the halls or my room. I was still monitored and doctors checked my progress every day. I had some energy, enough to want to walk and have people around to talk to, and the pain was minimal. At this point, I only took regular Tylenol once a day. All things considered, I felt great when I was in the hospital.
Recovery at Home
After about a week in the hospital I was able to go home. The nurses warned me when I left because it is very common to feel worse or overdo things when you are at home, being back in your normal surroundings and wanting to return to normal activity. I became more tired when I got home but I still was eating and sleeping well and in minimal pain. The only pain I experienced was back pain, which was probably due to inactivity and laying on a metal table for hours during surgery.
About three days after coming home I had blood work and visited my cardiologist for a CT scan. The purpose of these visits was to make sure everything was healing correctly and there were no complications, like fluid in my lung. Then I also saw the cardiologist after one and three months, and now that I am almost at the two-year mark after my surgery I see my doctor every four months. I was also put on a beta blocker in order to further protect my heart.
My message has always been and will continue to be that you need to advocate for yourself and know your body. If something doesn’t feel right it probably is not right. Also, life after aortic dissection surgery can be as normal and full as you want it to be. I work, cook, clean, drive and hang out with my family and friends just like I did before. A surgery is not the end of your life, it is a new beginning.
Attending your regular appointments with your medical care team, as indicated by the Clinical Care Guidelines, is an important step in ensuring your health is monitored. There is power in having the knowledge to impose treatments and preventative measures when they are needed. Like Christina mentioned, it is important to listen to your body and treat your body well.
The Patient Handbook on Turner Syndrome is a resource available in our shop to help you track upcoming appointments and understand your needs as a patient who has TS. Its information and charts will guide you through your health journey.