My name is Esther Nobel-Renes and on February 1, 2024, I underwent open-chest surgery in which an ExoVasc PEARS (Personal External Root Support) implant was placed around my dilated ascending aorta. By sharing my story, I hope to inspire others who are faced with this decision.
For me personally, my story started in December 2022. I have been a physical education teacher for more than 20 years and for much of my life I have loved many different watersports, including windsurfing, swimming and diving.
After the birth of my two boys (now 19 and 22 years old) I slowed down a little, but being active in sports alongside my work has always been a way of life.
After my little brother and later my father were diagnosed with a dilated aorta, I was advised to check my aorta too. This also turned out to be dilated.
Officially, it became clear that there is FTAAD (Familial Thoracic Aortic Aneurysm and/or Dissection) in my family. The dilation (4.5 cm) was still acceptable at that time and no intervention was needed. I was given lifestyle advice regarding sports, and the advice to exercise with a maximum heartrate of 125 beats per minute.
In one fell swoop, my life changed. From a fanatic sports-teacher, I had to organize my lessons differently so peak load in my heartrate would be prevented.
I bought a sports watch to monitor my heartrate and I went to work on an electric bike. I found it difficult and had trouble adapting to this new situation.
Things rapidly changed after my little brother had a TIA (dissection of the carotid artery). Because of the TIA, the standard of intervention of the dilated aorta changed to 4.5 cm. This meant he needed surgery on his aorta after he recovered from his TIA. He had a successful PEARS surgery on his aorta in April 2023.
Unfortunately he had a few complications, but he recovered in time.
In the meantime, I was called up to register at the AMC in Amsterdam. My cardiologist told me that I also needed surgery on my aorta.
In the months leading up to the surgery my husband and I read a lot about the PEARS operation. We talked a lot with each other and prepared ourselves for what was to come. We explained to the kids exactly what the surgery entailed. We were very confident about the PEARS surgery I was going to have.
A custom-made textile tube would be placed around my dilated aorta.
In the meantime, my children were also examined. When I heard that they were okay for now, it made all the difference for me.
From that time on, I felt more space to enter the operation in the way that suited me best. Yoga, walking and cycling helped me in preparing physically and mentally.
Besides that, I read a lot of stories on www.exstent.com.
Many people had gone before me, and the stories gave me confidence.
I had PEARS surgery on February 1, 2024. I am patient 977 worldwide who has received an ExoVasc PEARS. I was in the ICU for 1 day and then went to the ward. The pain was under control and within 1 day I was walking a bit on the ward again. That was fantastic. I didn’t get any complications and was allowed to go home after 6 days.
There started the recovery period. Through trial and error my recovery is going well. Sometimes you want to do more than you are able, but I am working towards a full recovery (now 3 months after surgery). It is such a relief that the dilation is solved.
I am so grateful that the PEARS came my way and that I was given the opportunity to have surgery in the Netherlands.
Thanks to everybody who helped me xxx.
