CHD Over 60
Learning from Each Other: Living with CHD for More Than 60 Years
Former ACHA Board Member and current volunteer Donna Smith (born with tetralogy of Fallot) has compiled profiles of some of our members aged 60 and above. Check back each month for a new profile!
Alan Sabal, who is turning 60 this month, took some time to reflect on living with subaortic stenosis.
Q: When did you have surgery?
A: When I was ten years old I had a heart catheterization, followed shortly by surgery to repair the subaortic stenosis. The surgery occurred in April 1962 and by July I was in a swimming pool! I had no restrictions after surgery because the doctor told my parents to treat me like any other child, which they did.
Q: What was it like having surgery at 10 years old?
A: It was scary because I was fully awake during the heart cath procedure six weeks prior to the surgery. When it was time for me to go to the hospital I was not told why I was going back. I only found out when I was there. As a 10-year-old, you don’t understand what is going on; a lot of it didn’t make sense to me. I was left alone in the hospital with no parent to comfort me. I do remember being shaved as part of pre-op at 5 a.m., the post-op grogginess while hooked up to big machines, and being moved to a different ward late at night when there were not a lot of people in the hospital. These are all scary events for a young child to experience. Unlike today, neither doctors, nurses, nor family knew how to deal with the psychosocial care of young patients. Since nothing was done for the emotional stuff when I was a child I did not deal with a lot of the emotional trauma until later in my life.
Q: Have you ever been lost to care?
A: I saw my pediatric cardiologist Dr. Robert Kahn until I was 31, when he retired. By then we even developed a personal friendship. About 18 months ago through ACHA I found an adult CHD cardiologist. During my initial visit he asked me, “Do you know that this condition [the membrane that had been cut back] could redevelop?” My reaction was, “What?!” This was the first time I ever heard this. My original pediatric cardiologist had told me to go on with my life. For a long time I did not have a cardiologist. I intuitively knew that I needed someone who would understand my unique situation. That’s why it’s important to have the CHD specialist who has experience with adults who had heart issues as children. We are special! Our hearts are not like everyone else’s. Now my condition is being monitored on a regular basis.
Q: What would you tell teens or young adults about living with CHD?
A: I am living proof that open heart surgery does not stop you from living a full and complete life. Nothing should hold you back from being who you are and what you want to be. Having said that, I have always had an understanding that there are things you just shouldn’t do. I will not put my life at risk for those things. I have boundaries. I have not lived a sheltered life. I have traveled around the world and experienced as much as I can within reason. Finally, it is important to take care of yourself. I understood early on that I had to exercise regularly and watch my diet if I wanted to live as long as my maternal grandparents.
As Janet LaCosse, an ACHA member with tetralogy of Fallot, nears her 69th birthday, we spoke with her about life with CHD.
Q. Did your parents treat you differently than your siblings?
A. I was treated differently than both my older and younger sister. My parents were overly protective of me. My father would drive me to and from high school dances. I accepted that my mom and dad loved me and tried to protect me. Mom would tell me, “No matter how bad things get, you always have tomorrow to look forward to.” She was an excellent mother. Sometimes you wonder if you would have made it without such a good mother.
Q. What surgeries have you had?
A. I had a Potts shunt in 1952, repair in 2002 and an implantable cardioverter-defibrillator (ICD) in 2005.
Q. While growing up, how did you feel about your scar?
A. My Potts shunt surgery left a scar on my back. I had a lot of pain with that surgery because they separated my ribs. In addition, they took out a rib on my left side, so I always had an indentation. I just accepted it. I was an easygoing kid.
Q. What were your exercise limitations?
A. Before my Potts shunt surgery at age 9, Mom would push me to school in a stroller in front of the other kids. The principal would carry me to class on the second floor. It was embarrassing. I wondered what the other kids were thinking. I think they talked behind my back and sometimes laughed at me. My faith gets me through these hard times.
Q. Did CHD influence your career choice?
A. Yes. I wanted to be a pediatric nurse because I loved kids. I went to college for six weeks and then decided to get married. We have taken in 40 foster children, often ones who were abandoned or abused, adopted two and had two of our own.
Q. Have you ever undertaken risky behavior?
A. I went skateboarding with my grandchildren a few years ago! It was so much fun!
George Warren is a retired pathologist and a longtime ACHA member who has served on the Board of Directors. A veteran of two surgical procedures for tetralogy of Fallot (Potts shunt in 1955 and repair in 1964), he offered these insights into the value of true friends and the “opportunities” of a long life. Here is an excerpt from our conversation:
Q: What was the prognosis at the time of your diagnosis?
A: My dad took me to Baltimore to see Dr. Helen Taussig in the spring of 1947, when I was six weeks old. Dr. Taussig said, “I am not certain what it is, but it is serious.” In January 1958 my cardiac surgeon, Dr. Robert Gross, wrote my mother a letter, which read, in part: “…it is not too satisfactory to think in terms of years of survival, but that the real success lies in the direction of how much happiness and contribution to life we can provide for someone under our care.”
Q: How did having a heart defect differentiate you from your peers?
A: I couldn’t bicycle up hills, but my buddies always waited for me to catch up. That meant the world to me. I was always included. I couldn’t play football, baseball, hockey or basketball. But the school found ways for me to participate. I played golf and rode horses. My schools, coaches, and doctors made all of this possible and I am still indebted to them all. The key was to focus on what I could do, not whine about what I could not do.
Q: Were you properly educated about CHD?
A: I’ve always known the basics through doctors and later through reading. In the third grade for Show and Tell I borrowed some props from Dr. Gross, illustrating an early pump oxygenator, which he used at a surgical meeting. But my education was significantly expanded by the staff at Boston Children’s Hospital when I began receiving ACHD care there in 2000.
Q: How did you feel about your scars?
A: I was proud of them and liked to show them off. I still do!
Q: What advice would you give other CHD patients?
A: One of our rewards for survival is that we will be at risk for other medical disorders that all older people face: obesity, diabetes, cancer, skin disorders and joint problems. Never get one of these diseases if it can be prevented. Be watchful to diagnose and treat early those which cannot be prevented.
Always have a good general internist as part of your health care team. We cannot expect our cardiologists to watch out for everything. It is our job and the job of a general internist to watch out for the whole rest of the body.
Marilyn Petrosie, born in 1945 with tetralogy of Fallot, is one of the CHD pioneers. A self-described “guinea pig” for the doctors, Marilyn has had a Blalock-Taussig Shunt in 1947, surgical repair in 1969, pulmonary valve replacement and Maze procedure in 2008, and 11 heart catheterizations. We talked with Marilyn to find out more about living with CHD in the early years of open heart surgery and how this experience affected her life choices and experiences. Here is an excerpt from our conversation:
Q: When was your initial diagnosis made and what was the prognosis?
A: When I was nine days old I was turning blue and straining for air. The only diagnosis that could be made at the time was pulmonary stenosis. The doctors told my parents, “There is nothing we can do. Just take her home.”
Q: With no social networking or group like ACHA to educate your parents, how did they make the decision to approve your surgery?
A: I grew up very poor in Oklahoma without electricity, running water or indoor plumbing. Mom kept trying to find answers. No one knew how to treat me. Mom took me everywhere, hoping they had a fix for me. They were going to do surgery right after I graduated from high school in 1964. But my parents were told I had a coagulation problem and would die on the table. [Marilyn’s surgery finally took place in 1969.]
Q: How did CHD differentiate you from your peers?
A: In school I would turn blue and get short of breath. Grade school teachers didn’t push me because they were afraid of what might happen. In first grade, when I started passing out, teachers wouldn’t even pick me up. They just waited until Mom got there. In junior high I couldn’t participate in gym or any sports. I decided, “OK, Mr. Smartypants athlete, you may be physically capable, but I’m mentally capable.” I decided to excel in things I could do like science and math.
Q: Did CHD influence your career choice?
A: No. I wasn’t fussy; I just wanted a job. I worked in a machine shop taking the burr off of bolt nuts. I was good with numbers so I did bookkeeping. I worked on a navy base and with some on-the-job training became a computer specialist. I just kind of accepted what I could or could not do. I didn’t try to be superwoman.
Q: Did you ever need to hide your heart condition from anyone?
A: No. This is who I am. Take it or leave it.
Click here to see a 1947 article about Marilyn in the Oklahoma City Times.