2/12/2013 9:56 AM
I was born with coarctation of the aorta and patent ductus (PDA) in 1959. I only know the beginning story from my mom, who is a very persistent nurse. She says that she always knew there was something wrong with me but doctors would not listen until I was very sick. Luckily they finally found someone who did help them and then I had surgery.
As a child I remember going to the cardiac clinic at Elmhurst Hospital every year. They were great but it was during the time that the doctors only talked to the parents. I was left in the hallway while the doctor and my mom talked. I never knew what was going on and often felt very scared.
In my twenties I was told just to follow up with an internal med MD, which I did. I had leg pains for 7 years that I went to the doctor about. I was usually told it was because I was a nurse and on my feet. My blood pressure became dangerously high but they just took me off birth control pills. Unfortunately I trusted my doctor and just thought I was nuts and a complainer.
I had my daughter at age 30 and afterward my legs hurt even worse. She was a fussy baby and I could hardly take care of her. Finally one of the doctors I worked with gave me the name of a cardiologist at Loyola. Dr Litchenburg saw me once and said something had to be done. I then had a coarcplasty done while I was awake. Yes still the guinea pig for procedures. It felt horrible but thank God it worked. I finally had pulses in my feet and my legs didn't hurt.
Unfortunately Loyola does not have the ACHD clinic, and I live in Rockford. I try to take care of myself but am a little lost and would like more cardiologists and MDs to understand those of us that still need to be watched. I was the first adult to have the coarcplasty at Loyola and they did not put a stent in my aorta so I wonder if I will have problems again and I have a bicuspid aortic valve. Hopefully, adults with congenital heart issues will get the treatment they need and we will find the babies with CHD early.