Nicole, a woman who has Turner Syndrome (TS), shares her experience undergoing heart surgery during the COVID-19 pandemic. Her heart surgery is not uncommon among those with TS, so many with TS can relate to her experience.

I am a 32-year-old woman with TS, which can carry a higher risk for certain cardiac conditions than for other girls/women, specifically aortic dissection. This post describes my share my own personal experience with heart surgery during the pandemic.

History and Diagnosis

I have been monitored by a cardiologist since I was born. When I was 18 months old, I had surgery to correct coarctation, or narrowing of my aorta. I continue to visit my cardiologist annually so they can listen to my heart and do an EKG and echocardiogram. I feel fortunate that my doctors have taken such good care of me over the years. During my visit this past January, they could see on my echocardiogram that my cardiac status had changed. Previously, although they were monitoring these things, they had remained fairly stable. They could see that my aortic valve was very leaky because I have the classic bicuspid valve, which can be common with TS. The leaky valve was also causing the left ventricle of my heart to fill with blood and become enlarged. Further, had dilation of my ascending aorta, which was consistent with my existing cardiac issues.

Consultation with a Cardiac Surgeon

My cardiologist referred me to a cardiac surgeon, with whom I scheduled an appointment. I met with him in February, accompanied by my Mom, Michele; her husband, John; and my husband, Richard for moral support and so they could ask questions. The COVID pandemic had begun, but we didn’t know how serious it would become. The surgeon explained what my cardiologist had seen in the echocardiogram, and he began by answering our questions.

The surgeon then asked if I was planning to become pregnant. I explained that, since I have TS, it would be a difficult process for my husband and me. I had already spoken to my OB/GYN about the options available to me. The surgeon explained that he recommended replacing my aortic valve with a mechanical valve, which would mean taking Warfarin (a blood thinner) for the rest of my life. The mechanical valve and Warfarin would not be compatible with pregnancy, so if I were considering becoming pregnant, he would use a different valve. This second option would mean more heart surgery later in life. I explained that my husband and I planned to pursue adoption when we were ready.

The surgeon was very patient and kind, answering all our questions and reassuring us that things would be okay. I decided that I would have the surgery to fix my heart, which included replacing my aortic valve with a mechanical valve and my ascending aorta with surgical tubing. I scheduled my surgery for June.

Preparing for Surgery

As we moved into March and the COVID pandemic became increasingly serious, I was very nervous about surgery and how the pandemic would affect it. There were so many unknowns, and people with congenital heart defects are at higher risk if they contract COVID. By the time I went in for pre-operative testing, the pandemic was in full swing. The hospital had very strict rules. My husband and other visitors could not be with me, and I had to wear a mask everywhere I went. There were also signs and stickers on the floor to instruct people where to stand as they checked in to different offices and tests. It was very strange and a little overwhelming. I had one of my pre-operative appointments was actually over the phone, due to the pandemic. I also had a COVID test before the surgery.

Surgery

When I arrived at the hospital for my heart surgery, my family could not come in with me. I was very scared, but I knew what I needed to do. Thankfully, the surgery was a success. When I woke up afterwards, the nurses and hospital staff greeted me, but again, I could not have visitors. The nurses were very nice, particularly the ICU nurse. They helped me FaceTime my husband (thank goodness for technology!). I was in the hospital for six days after surgery, relying on FaceTime to communicate with my family, especially my husband, mom, and grandma. Some doctors even called me for vitural visits, as they had to limit their exposure to patients. During this time, I felt overwhelmed and scared, and–I’ll be honest–I wanted the comfort of having family close by.

I had to wear a mask any time I left my hospital room, for example, when I took walks in the hallway while keeping social distance from anyone else. There were not that many people in the hallway. When I needed to leave my room for testing, I also had to wear a mask. All the nurses and hospital staff were, of course, in full personal protective equipment. I feel very thankful to the doctors, nurses, and other hospital staff who took such excellent care of me. I know they do not have an easy job, particularly during a pandemic, and they were truly kind and caring and went beyond the call of duty.

Discharge and Recovery

Before the hospital discharged me, I FaceTimed my husband so the nurse could give him my discharge and home care instructions. My husband picked me up from the hospital, which is about an hour from where we live. I sat in the back seat with the heart pillow the hospital had given me to hold against my chest when I coughed or anything like that. I also need the heart pillow in the car to put under my seat belt. My husband filled my prescriptions and made sure I had everything I needed so I could begin recovering at home. Although my heart surgery during the pandemic was somewhat scary and overwhelming, it was very necessary, and now I am feeling much better.

Are you aware of the cardiovascular risks associated with TS? Click below to learn more!

The Emergency Contact Card is an excellent resource for any patient who has TS. Order your personalized wallet-sized card that informs emergency responders about any health concerns you may have.