I’m Aware That I’m Rare: Lori Myers (488)
the phaware® interview
Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a “blue baby” and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diagnosis. She emphasizes the importance of listening to one’s own body and following medical advice. Lori finds strength in her family, particularly her grandchildren.
My name is Lori Myers. I’m originally from Upstate New York, Adirondack Mountains. I have lived in South Carolina since 1987. I was born with VSD and Tetralogy of Fallot. I was one of a set of twins, the only surviving one. When we were born, we were blue babies. We were three months premature. I had a lot of health issues the whole time growing up. I had congestive heart failure. My pulmonary valve has been replaced four times and repaired twice. After the last one in 2014, I started having more breathing problems than normal. They’ve diagnosed me with bronchial asthma, with just asthma, with COPD. Everything under the sun except for actually knowing what it was.
After my surgery, the pulmonary doctor I was seeing sent me to a specialist for a second opinion, because nothing was working for my asthma at all. He looked at previous heart catheterization that would show him the right side of my heart, my lungs. Without even examining me, he came into my room and said, “You have what’s called pulmonary arterial hypertension, PAH.” That’s when he told me it was a terminal illness.
They gave you three to five years at that time. I’m like, “Oh my God, my son is in high school.” I couldn’t believe it. I was worn out. I was tired. I had no energy. I felt like I was always breathing through a straw. I am so tired of always being tired. Some days I wish I could just pull the covers over my head and make a big wish and wake up and I’m a totally different person. I’m the only one in my family that has ever had a health issue from birth to now. Nobody’s ever been born with something they’ve had to deal with their whole entire life. They all say, “Well, I understand how you feel.” Unless they’ve walked in my shoes, other than the people that I know have this, no one knows how we feel.
It doesn’t only affect our health physically, but emotionally, psychologically. Not only do I have a terminal illness with my heart but now with my lungs too. It’s like a racing game to see which one’s going to get me first. When my heart is stable, my lungs act up. When my lungs are stable, my heart acts up. Neither one of mine will survive the other surgery. Even doing them together, my lungs wouldn’t make it through the heart and the heart wouldn’t make it through the lung surgery. My chest cavity isn’t big enough for an actual sized heart and lungs that I should have.
My son kind of ignores it because he knows what the realization is. He calls me daily, “How are you doing? Are you all right?” I take care of his two kids. My husband, if I don’t answer the phone, he freaks out because he’s worried. It’s emotional for them as well as us. Three years ago they told me I had three months. My son was engaged, I had a grandchild on the way. The only thing I’ve ever wanted is to be a grandma. I wanted to be the grandmother like my grandma was.
My doctor said, “Lori, I promise you, if you listen to every word I tell you, if you do every single thing I tell you, you’ll see that grandbaby.” I said, “Okay, I’m ready. Whatcha you got for me?” I followed his direction to the tee. I didn’t vary it. I didn’t eat anything I wasn’t supposed to eat. I didn’t drink more than 64 ounces a day. I didn’t eat anything processed, nothing canned. I prepared everything. I absolutely ate no salt unless it happened to be in it from some other means than me, but nothing out of a can. I love canned green beans. I could sit down and just open a can of green beans, drain them and just eat them plain. I love vegetables, but nothing processed. I lived on Mountain Dew. I mean, that was my drink of choice. I didn’t drink alcohol. Well, I gave up that and went to Sprite Zero. Loved it. I drank Sprite Zero.
He said, “You need to get to this weight. You need to do this and just think what you’ll look like for your son’s wedding.” I said, “Okay.” So I did all that. My son got married in November. I was as big as a house, because I had walking pneumonia and congested heart failure and didn’t know it, because I was planning a wedding and planning Thanksgiving. They got married a week before Thanksgiving. I wasn’t paying attention to myself, which I know is the first rule that we’re supposed to do.
If we don’t look out for us, nobody’s going to, but my son came first. He always has come first. Now it’s my grandchildren, then my son, then me, and my husband’s in the mix. Right after that, the day after Thanksgiving, I was admitted in the hospital. I got better from that, went home. My daddy passed away February 2nd. I thought my world had collapsed. I just wanted to crawl right into bed and pull the covers over and say, “Okay, I’m ready, God, take me.” My two grandchildren are what gets me up daily and keeps me going. My doctor told my son after my granddad was gone, “You ever take her away from her you might as well forget it.” I’ve seen her every day since. I was diagnosed 2014. They said your average [survival] is three to five, maybe seven [years] if you’re lucky. It’s 2024 now. 10 years since then and five years more than what they ever thought I’d have.
If I could give any advice to a newly diagnosed patient it would be listen to your own body, listen to your doctors. Everybody says listen to your doctor first. You need to listen to your body before you can even tell your doctors anything, because your body knows before a doctor does. Just follow what they say. Seeing the smiles on your family, that’s what matters. Not a piece of cheese or the turkey sandwich or the hot dog at the ball game. It’s a smiles on your grandchildrens’ faces.
My name is Lori Myers and I’m aware that I am rare.
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