Turner Syndrome Foundation
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 after aortic dissection surgery.
Life Post-Surgery
Hello again! I hope everyone is doing well and staying safe during these most challenging times. This month, I would like to look a little closer and give you more insight into how my life has changed after aortic dissection surgery. In many ways, my life has not changed. I still work in the school systems, I recently moved, and I am greatly enjoying decorating my new house and learning about taking care of a garden (we previously lived in an apartment).
My New Normal
I am very lucky in that I can still maintain a normal life for someone in their early 30s. I can work, cook, and hang out with friends, just like everyone else. Not every recovery is the same, and not all surgeries allow you to return to a normal life. I am truly grateful to the doctors, nurses, and surgeons who helped me along the way so that I could have a normal life.
Some Limitations
Although my life has returned to normal, day-to-day activities, I still have some limitations and follow-up appointments. Some of my limitations are that I cannot lift more than about 30 pounds (which came in handy when we moved, because I just got to decorate). I also have to be careful about the types of exercise that I engage in. Weightlifting or anything that would put strain on the chest muscles is out, as it could rupture the incisions. I can exercise and go to a gym, being mindful of what and how much I am doing. I enjoy the treadmill and bikes, and I also am starting to enjoy yoga.
Follow-up Medical Care
In terms of follow-up appointments, I see my cardiologist once every four months now. When I see her, she checks my vitals, does an EKG, and we discuss how I am feeling. I have an annual stress test and echocardiogram. As with many other surgeries, I see the surgeon who performed my procedure yearly (this will continue for a few more years). When I see him, he looks at the incisions, checks my records and vitals. and performs a CT scan, EKG. and echocardiogram to ensure all is well and there are no complications.
Changes Can Be a Blessing
As I always I thank you for taking the time to read about my story as I deal with life after aortic dissection surgery. I encourage you to ask any questions you may have. Remember, a medical procedure does not need to destroy your life; it just changes it, and you have the power to make these changes a blessing.
Attending 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 employ treatments and preventative measures when they are needed. Like Christina mentioned, you can go back to normal after a surgery, albeit a new normal.
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.
Christina – I am really happy that you have made a complete recovery from your surgery. I just want to let you know how incredibly fortunate it was that your condition was caught in time and was able to be taken care of. My wife had an aortic dissection back in February and unfortunately she did not survive surgery. I think what you’re doing in sharing your experience is not only very brave but very informative for other women to pay attention to their bodies and recognize when something doesn’t feel right. My wife had Turner’s Syndrome and she lived a very happy and very productive life. There were no signs this was happening until it happened. She passed away at the age of 53 and we were married 21 years. She never let Turner’s Syndrome define her as a person and her inner strength was very inspirational. She never saw a cardiologist; I’m not even sure she knew of the risk of an aortic event. I did not know. It’s something that will haunt me for the rest of my life. Once again, thank you for sharing your story and best wishes for a happy and healthy life with your family.
Thank you for reading my article and for the kind words. I hope my story does help someone because I very well could have had a different outcome if the doctors continued to minimize my symptoms. I am so sorry for your loss and I hope no has to go through what you went through.
Thank you for sharing your story about aorta dissection. My daughter is TS XO and is 9 yrs old. At her echo in February we discovered her ascending aorta is dilated to 3.2. When did you start becoming more symptomatic? Also, did you take Growth Hormones? Her dilation started after 18 months on hormone therapy, showing a direct correlation
Thank you for reading! I was on growth hormones when I was younger. I was not symptomatic until about a month before the surgery. I would suggest that you talk to her doctor about having a CT scan. I was told they give a more complete picture of what if going on with the aorta.