I once heard a quote I know to be 150% true that has helped me through my surgeries and trials.
“God already knows what we’re made of. But perhaps… He wants us to learn what we’re made of.” – John Bytheway
“Truncus arteriosus is a rare type of heart disease that occurs at birth (congenital heart disease), in which a single blood vessel (truncus arteriosus) comes out of the right and left ventricles, instead of the normal two vessels (pulmonary artery and aorta).
In normal circulation, the pulmonary artery comes out of the right ventricle and the aorta comes out of the left ventricle, which are separate from each other (Found here).”
It’s not a genetic thing but rather a rare condition that happens to 1 in 10,000 kids. Those born with this condition will be under the care of a cardiologist and will have a few open heart surgeries as you grow.
I come from a great, great family. I’m very close to my parents and sisters; they’ve been such a great support. I’m LDS and my religion is very important to me.
My parents noticed I had a lot of swelling and heavy breathing as a baby. I saw a few cardiologists and was eventually referred to a heart surgeon in San Francisco. I had four open heart surgeries, but not until I was about 4. I’m glad I don’t remember the pain I went through. I do remember the wall paper in the hospital room, and my parents took pictures.
In high school and college I was discreet about my heart condition. I didn’t care what people thought, I just didn’t want to get special attention or be treated differently. However, some of my closest friends knew. Now I am a little more open about it.
I still can’t believe I was able to get two degrees. I have a degree from BYU Idaho in Office Systems Management, and a certificate in Medical Office Assisting.
I’ve always been a pretty positive person. My mom has always said, “Better to be an optimist than a pessimist.” And she taught me to not dwell on things I can’t control. Even when I had my surgeries I always tried to be very positive. Because… who likes to be around a negative nelly? Not me!
I am pretty normal for the most part. Sure I have some restrictions, like I’ll never win a marathon, but that is fine as I really hate running anyway! But, I do exercise, I walk our Shih Tzu, play my favorite sport, golf, and enjoy snow skiing. I like to crochet and play the piano. I do almost anything I want, but some sports I’ll never do and that’s ok! Can’t cry over spilled milk. I take care of myself by eating right, exercising and taking vitamins.
I met my husband on the golf course. I told him “Hey, I have a heart condition” and told him what it entailed. Then I told him, “There is a 98% chance I may not have kids”. He told me he didn’t care and wanted to be with me. Then I told him, “No really… I am being up front and honest”. I even had my dad explain it to him. I asked him to think it about for a few days. He said he didn’t care, and has been the best.
Sure we’ve had tough times, but these trials have really strengthened us, and most couples may not have pulled through but we have. We have been married for almost 13 years.
About 11 years ago I had major open heart surgery. I had some complications, and my husband and family were super supportive. Each person is different, but it took me almost an entire year to get back to myself.
This may not apply to every girl, but, with my condition I am not able to have kids. The pressure it would put on my heart would either kill me or the baby. I’m sorry, but I am not risking my life for a baby.
After about a year of being married we decided to see if it was safe for me to have kids. After they ran some tests, it was concluded it was not safe.
I was pretty sad and my husband was so supportive and sweet. I was depressed and in bed for a couple days, but I’m not one to get down. So, I decided to not worry about the things I can’t control. We decided to be super safe and get my tubes tied as I don’t believe in “oopise” babies and I wasn’t going to have one. My husband volunteered to have a surgery so I wouldn’t have to, but I insisted it be me… the scary part is it was my easiest surgery.
Perhaps someday we will adopt, but for now we have lots of nieces and nephews and our Shih Tzu, Romo or “Little Prince”, and this is great for us!
I occasionally get random chest pains. I cannot control them and they just come and go, but I take Tylenol and they usually go away. However, sometimes they get so bad, I have to leave school or work, go home, take Tylenol, get a heating pad, lie down, and they will eventually go away. Thank goodness my family or friends don’t treat me any different and I am glad!
The scars on my chest are called Zipper Chest. I’ve learned from my parents that it doesn’t matter what people think of me, only what the Lord thinks of me.
I have always been a guinea pig with my cardiologist even now at 36. The cardiologists always have medical students come listen to my heart because the condition is so rare, but I don’t mind the attention.
About a month ago, I had two third year medical students come listen… I’m always one to help where I can. My husband can hear my heart at night sometimes, even in the other room, as it is that loud!
I’m so grateful to have such a great husband, parents, sisters and all my family.
I know that with each trial you have you can choose to be positive or negative, and I choose to be positive.
I’m so grateful to know that some day in heaven I won’t have these scars and I’m thankful for my LDS faith that I was raised with and still am today. I would be so lost without it.
I’m so thankful for my Heavenly Father.
I’m also grateful for a very smart cardiologist and surgeons who have helped me along the way. I wouldn’t trade lives with anyone. I have such a great husband/family/friends.
That is my story and I hope it helps someone.
One more quote to leave with you:
“I’m thankful for my struggles because it lead me to my faith.”
Today’s guest poster is Kelsy.