I was born with Tetralogy of Fallot and I had my final corrective surgery at age 13 yrs old in 1974. About 1 yr after my surgery I saw my pediatric cardiologist for the last time. He discharged me from his services. I was discharged with no restrictions and no cardiologist referral. I remember my mom asking about me having children and he said from a cardiology standpoint he didn’t see why I couldn’t. I went on with my life and I didn’t restrict myself even though I would still tire easily. I knew my limits.
As an adult I was sent to a cardiologist by my OB/GYN when I got pregnant with both of my children. This was back in 1988 and 1993. I don’t know if there were adult CHD doctors at that time. In 1993 when I went to a cardiologist during pregnancy and all he could think about was how he couldn’t wait until after I delivered. He was wanting to do a bunch of test to satisfy his curiosity. I went home and told my husband that that Dr was crazy and I am not going back to him after I delivered. We moved from Texas to Tennessee in 2011 and I met a woman at church and we discovered that we both have TOF! She encouraged me to go to the ACHD Clinic at Vanderbilt. I finally decided to see a cardiologist in 2014. I was referred to a regular cardiologist by my PCP. I went to that cardiologist and he was so nice. He was the first cardiologist that referred me to an ACHD doctor. To this day I am thankful for that cardiologist for referring me to an appropriate cardiologist that could meet my needs. I now see my cardiologist on a yearly basis sometimes more often depending on what is going on with my heart. I wish I had this kind of cardiac care my whole life. I have made a lot of CHD connections and joined the ACHA where I meet CHD people. I went my whole childhood not knowing any people with CHD and feeling so alienated. But not anymore!😃
I was born with Tetralogy of Fallot and I had my final corrective surgery at age 13 yrs old in 1974. About 1 yr after my surgery I saw my pediatric cardiologist for the last time. He discharged me from his services. I was discharged with no restrictions and no cardiologist referral. I remember my mom asking about me having children and he said from a cardiology standpoint he didn’t see why I couldn’t. I went on with my life and I didn’t restrict myself even though I would still tire easily. I knew my limits.
As an adult I was sent to a cardiologist by my OB/GYN when I got pregnant with both of my children. This was back in 1988 and 1993. I don’t know if there were adult CHD doctors at that time. In 1993 when I went to a cardiologist during pregnancy and all he could think about was how he couldn’t wait until after I delivered. He was wanting to do a bunch of test to satisfy his curiosity. I went home and told my husband that that Dr was crazy and I am not going back to him after I delivered. We moved from Texas to Tennessee in 2011 and I met a woman at church and we discovered that we both have TOF! She encouraged me to go to the ACHD Clinic at Vanderbilt. I finally decided to see a cardiologist in 2014. I was referred to a regular cardiologist by my PCP. I went to that cardiologist and he was so nice. He was the first cardiologist that referred me to an ACHD doctor. To this day I am thankful for that cardiologist for referring me to an appropriate cardiologist that could meet my needs. I now see my cardiologist on a yearly basis sometimes more often depending on what is going on with my heart. I wish I had this kind of cardiac care my whole life. I have made a lot of CHD connections and joined the ACHA where I meet CHD people. I went my whole childhood not knowing any people with CHD and feeling so alienated. But not anymore!😃
Thank you so much for sharing my story, Leigh. I am so grateful for you and your newsletter.
Your story will resonate with so many people! Thanks so much for sharing.