And Holding On To Her Faith
In March of last year we brought you the story of Daisy Scott and her fight against one of the rarest medical conditions in the world: Carney Complex. At the time, I had never heard of it, had no idea that something called Carney Complex even existed, or that it was filling Daisy Scott’s young body with tumors.
Today, Daisy is 26, and she has been coping with this very rare condition for two years. She has now moved back home to Texas from Virginia so she can be near her family, and I asked her to explain her day to day struggle to all of you.
“I have my days where things are really good and I feel really good, and then I have other days. I guess the hardest thing is the worrying about what is next. Carney Complex is so rare that no one knows about it, including most doctors. That is completely frustrating.”
As we told you last year, Daisy first had a tumor in her heart in 2011.
“I remember them saying there was a 99% chance that it would not come back. Of course, I had done research and I’d never come across Carney Complex. I researched where my tumor might have come from, but Carney Complex never popped up on the radar. Plus the heart surgeon in Abilene told me how rare it was to have a heart tumor Neither of us ever considered Carney Complex.”
Of course, with only 750 known cases world wide, why would anyone have thought of it at that point?
“After the surgery in 2011, I did notice things. I started gaining weight, not dramatically, but gaining, and I developed a hump at the base of the back of my neck. I went to the doctor, who told me it was all in my head.”
How many times have we heard that? But life moved on, and Daisy married her military hubby and moved across the country, and life was good. Before long, she was expecting the couple’s first child.
“I was pregnant with Denver and gaining unbelievable amounts of weight, and we could not figure out what in the world was causing it. I’d try to tell the doctor who, of course, thought I was eating too much.
“It was my first pregnancy, and I had no idea how things were supposed to work. I got pregnant in November. and by Thanksgiving I was showing. Of course, people assumed that I must have been pregnant before I was married, which I was not. Even my family asked that question because I was so big.
“As it turned out, I had developed Cushings Disease, which is very rare, but it causes you to swell, your hormones to go crazy, and you gain lots of weight. The doctor actually believes that I developed Cushings after the first heart surgery in 2011 and that the pregnancy triggered the symptoms of Cushings.”
Thankfully, Daisy’s husband was in the military and even more thankfully, the couple was sent to Virginia, where she found herself with some of the best doctors in the country.
“When my OB doctor first saw me, she knew that something was not right, that I was too big and too swollen. She also noticed that I was broken out on my back and face and that I had a lot of stretch marks on my stomach, arms, and legs, and I was only four months pregnant.
“She didn’t know what it was, but she booked me with an endocrinologist, but that was two months down the road. Two weeks later I was back with the OB because she was worried about preeclampsia, and she wanted to know if I’d seen the endocrinologist, not understanding how long it takes to get an appointment. That night she called me to say that she had talked to the endocrinologist and that I should come back early the next morning for her to admit me into the hospital.
“She did not want to tell me what they were looking for, but I insisted. She would not tell me so I put Cory on the phone, and she let him know that she thought it was Cushings. We stopped eating and we hit the net, researching. That was one of the longest nights of my life, worrying about the baby I was carrying.
“Everything I read talked about how people with Cushings don’t usually conceive, and here I was pregnant and possibly with Cushings.”
Early the next morning, the couple was in the hospital, where Daisy remained for the next two months.
“Of course, at this point, the only thing we knew was the Cushings had been confirmed. When I told the endocrinologist about the heart tumor in 2011, he looked at my face and my body, and he told me that he wanted to test me for another condition. He had studied something called Carney Complex, but he had never seen anyone with it. And suddenly, I was dealing with two things I’d never heard of, Cushings and Carney Complex.”
And she was pregnant, but that is a story in itself, a story for another time.
“Today there is a private group on Facebook for those with Carney Complex, and that is the best thing that has happened. At least I can connect with someone who is going through the same thing. I’m not the youngest in the group; one is actually four. It breaks my heart every time I see something he is going through because I am so blessed that my own daughter does not have it, and is not going to have it. We have had her tested.
“Some days I want to stay in bed and cry but, of course, I can’t because I have a two year old. Then, most days I’m fine. There are lots of times when I just want to give up, but I can’t.
“I live with the unknown because I am pretty much alone in this. I’ve had two heart tumors. I don’t have adrenal glands because they both had tumors,” which means she has Addison’s Disease, something I can totally understand. To stay alive, she takes a replacement steroid, which comes with its own set of problems.
“I was born with Carney Complex, born with that mutation. They are not really sure why mine was inactive until 2011. I’ve learned from being in the Facebook group that we are all different. Apparently I was very, very blessed not to have to deal with this until I was an adult. I was such a healthy kid when I was growing up.
“Now, I go to Scott and White for endocrinology. I have to wait 4-6 months for appointments. That was not the case in Virginia, where I could get right in or even email my doctor for help. I miss that terribly. I really think if it were not for him, Denver and I might not be here.
“I see my endo every six months, and I go to the National Institute of Health in Maryland, usually for 11 days where I have MRIs on every inch of my body to search for tumors. They are currently watching a pituitary tumor that I have so they can make sure that it does not get bigger. They can take that tumor out, but it will grow back so they treat it with injections to keep it from growing. I get the injection every 28 days.
“It’s horrible. It’s a needle about a quarter of an inch wide. It almost looks like a really thick pencil lead, and they give it in the fatty area of the hip every 28 days. It makes me so sick, vomiting and my stomach cramps for 4-5 days a month. I take anti nausea meds to try not to lose my hydrocortisone so that I don’t go into adrenal crisis.
“The pituitary tumor is causing acromegaly, which is the giantism hormone. They caught mine in time to take care of it. They do measure my hands, feet, and my head just to make sure that I am not growing. That horrible shot controls the acromegaly. If it continues to work, then we won’t have to remove the pituitary gland.”
So how does this affect a relationship that has only existed for almost three years?
“We’ve gone through more in our little short married life than some people do in a lifetime. I think that it has brought us closer together, but it is also hard. I’m always stressed before I go to Maryland for testing, and I know I’m hard to get along with then.
“I feel like it is just day to day because I struggle with so much that I can’t control. Some days I wake up fine, and some days I wake up in so much pain. I have a tumor on the pelvis that has wrapped around nerves. Because of where it is located, it will do more harm than good to have it removed, but I live with constant pain because of it.
“Of course, they give me meds for it, but the pain is always there. Some days it is a lot worse than others. It affects my standing and my walking. The tumor has not grown so as long as it does not, we won’t do surgery.
“We moved back here because Cory will be out of the military in June. We always knew when we married that I would need to work, but with a baby that came at 26 weeks and then with my Carney Complex, that has been impossible. I was offered a job at H&R Block in Dublin, and I decided that I could do that. We talked and prayed and that is another reason we moved back. I am working there now.
“The OB told me that it is impossible to get pregnant with Cushings, but I did. That has to be God, doesn’t it? One of the main reasons why it is so important to talk about what is going on is that people are so unaware of rare conditions and diseases. I think it is important for people to have knowledge, and I want them to know that this condition exists.
“I feel like I was angry for a long time, but I am now back at my happy place. I’m getting to where I’m happy and I feel that regardless of what happens in the future, everything is going to be okay. God has been with us this far, and I have more faith now than I ever did before.”
And when someone who is going through so much can stand and say that still she believes, it strengthens the faith of all of us, doesn’t it?