Nicole was born with Tetrology of Fallots and is now on the ACHA Board of Directors & Exec. Committee.
My name is Nicole Vickery Borek, and I was born in May 1970 with a seriously defective heart. I was a “Blue Baby” (cyanotic) born with Tetrology of Fallot. At 7 days old, I had my first visit with the Cardiologist at the University of Alabama in Birmingham Medical Center (UAB), who would save my life multiple times. In the 1970’s, there were many innovative breakthroughs in open-heart surgery, especially for pediatrics. I had a Waterston shunt performed in 1971 as a way to allow blood flow & keep me alive until I was old enough for corrective surgery. At the time, a child had to be 5 years old and/or weigh close to 50lbs before they could operate; today, they are able to perform the correction much younger.
Gaining weight has never been my problem, and just 1 month shy of my 5th birthday, I lost consciousness and became critical with difficulty breathing. It was 1975 and my parents had to rush me to Birmingham from Huntsville (approx. 2 hour drive then), as there was no Med-flight! They proceeded with open-heart surgery correcting the four things wrong with my heart (Ventricular Septal Defect, Atrial Septal Defect, Pulmonary Stenosis, hole in my heart). Just as they were finishing the surgery, the lead surgeon noticed my Pulmonary Valve was too small so they put me back on the heart/lung machine and extended it 3mm. The operation was a success.
My parents continued taking me for regular check-ups while raising me as a normal healthy child. They encouraged me in all my endeavors: Band, Choir, Softball, Student Government, Social & Academic Clubs; and I always excelled in everything, rising to leadership roles across the board while maintaining two jobs in high school. I never thought of myself as a Heart Patient (aside from the scars on my chest) until I was an adult.
In 2004, I noticed a sudden unexplained weight gain but thought nothing of it, just cut back on my eating as I had been overweight before. In the last 6 weeks of 2006, I gained 20 to 25lbs while eating less and moving more. My energy disappeared completely, and I began to notice pain in my left arm and chest. Just after Christmas, I even wrote my Will because I was so scared. Finally, on March 1, 2007, I mentioned the symptoms to my husband who said, “CALL THE DR!” The Dr. sent me straight to the hospital, and I spent my first night on a Lasix drip removing over 10lbs of fluid in less than 12 hours. Diagnosis: Congestive Heart Failure; Prognosis: Sudden Death will always be a possibility & we do not do Pediatrics in Huntsville, get a consultation at UAB – STAT! I was back at the Pediatric Cardiology office where it all began 37 years later with my original doctor’s protégé.
In March 2007, the Dr. originally said, “You need a new Pulmonary Valve, it’s normal for adult Tetrology repairs; (turns out I should have had one at age 18, but in 1988 he procedure had not quite been perfected), however, we are working on less invasive procedures in the Cath Lab that should be ready in about 5 years. You can wait that long.” So there we had it and we moved forward, and I headed off to Ft. Lauderdale on a family vacation then Mobile to spend my 37th birthday and Mother’s Day with my daughter…Memorial weekend I landed back at the hospital 20lbs heavier again. Suddenly it was evident my heart & lungs were drowning. I had been in Congestive Heart Failure for several years (10 to 15); and, my right heart enlarged. Kidney failure was possible; surgery was critical. In June while my husband was in Germany on business, I went back to the University of Alabama in Birmingham to have my pre-op heart catherization only to find out my potassium levels were way too low. Just a word of caution to those who may have this problem too: if you have tiny, veins NEVER let them give you a bag of Potassium through an IV unless it is through a PIC line. They had me on the Pediatric Wing that day, and I swear my parents and those kids learned expletives I did not even know I knew as it was so painful. Death row inmates get tons of drugs before KCL is administered, but I could not even garner a Tylenol from what my daddy tells me; I do not remember the experience, thank God. So, after spending the weekend in an adjacent hotel (alone in deep prayer), I doubled my oral dosage of potassium, and they performed a heart catherization and finally found the source of my problems (not Tourette’s). My pulmonary artery that had been repaired by the Waterston Shunt in 1971 had re-narrowed not allowing blood exchange between the heart & lungs. As for my pulmonary valve it was working double-time pushing the same blood out that would wash back in again thus creating the fluid retention.
Going into this last surgery my question was: “Is the 3rd time the charm?” or “Are 3 strikes then you are out?” Definitely, the third time is the charm! Mentally & emotionally, it was stressful facing this as an adult because I carry the load my parents carried when I was a child. I have more energy now than I have had in years, and the prognosis is great for me to go on another 10+ years before I have to think about any further heart surgeries as long as I continue to practice good heart health. My life changed forever by this experience in many ways. Body image is tough not because of my scar – my father and I have always called that my “life line,” but the constant weight gain/loss is difficult to handle. Each day I awake is different, sometimes I am my perfect “dry” weight, and others (especially when I travel) I can be up 5 to 10 lbs just over night no matter how much I restrict the salt in my diet. Learning to love the skin I am in regardless of the water weight has been a big hurdle, but overcoming that alone allows me to teach our younger heart patients that it CAN BE DONE! If I can help impart good self-esteem to our younger generation now, so they do not have to wait until they hit 40 as I did, it will be great for them.
The positive changes are an absolute necessity to honor the next phase of life given me. I eat a high fiber, low fat, low sodium diet, no sodas or anything with high-fructose corn syrup. I have never been a smoker and I only drink the occasional glass of wine with dinner. Exercise has been the hardest because just like Oprah I hate it! Two weeks after surgery, though, I was walking 1 mile a day in 15 minutes, now my goal is to walk 2 miles in 15 minutes. Believe the health-care providers when they promote exercise because I let my routine fall to the wayside causing a huge set back in recovery; however, the beauty is like all things we just pull ourselves up and get back on that wagon.
The worse part about Congenital Heart Disease is the biggest blessing of my life; at age 25, I learned I could not have children due to the effects of pregnancy on the heart. It is an issue that Doctors should educate parents of girls about. My personal experience was emotionally paralyzing because in 1980 (I was 10 yrs old), the Dr. told my parents, “Sure she’ll have kids! Let her play NFL Football if she wants!” He was not even sure I would make it to 20 at that time. After many consultations and some poor advice resulting in a premature hysterectomy, I adopted the joy of my life, a Chinese girl in 1996 at 8 months old; she is 13 years at the time of this writing, and the best daughter a mother could want. In fact, her father (my ex-husband) is a 43 yr old ToF repair patient too; the first I had ever met since my roommate at UAB in 1975, whom I will never forget! When you are the one left with life out of 2 suffering the same defects; your life’s purpose immediately grows beyond oneself; quite a burden for such a young child.
Life as a Heart Patient can be really tough if you let it, but if you take it one step at a time, smile/laugh as much as possible, keep moving, and encouraging others by telling your story you will find yourself well-grounded while surrounded by the best, most fascinating people on this earth!
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