Jada Lang knew something wasn't right. But she had no idea that she was as sick as she was.

Jada is among the more than 2 million U.S. adults living with congenital heart disease. It is a new frontier because these patients are living longer and have different individual needs related to their condition as they age.

Here is Jade's story in her own words. You can also listen by clicking below.

"Hi, my name is Jada Lang. I am 35 years old. And I have congenital heart disease and heart failure. I first realized something was wrong, my family actually noticed that I was falling asleep standing up. I would have frequent falls, and not realize why I was there, how I got there. At one point, I was driving myself, and I had actually gone in the ditch and fallen asleep, and almost got into a serious accident that way. I just couldn't stay awake long enough to finish a task.

Diagnostic confusion

When I tried to get help for my heart from my local team where I live, I was told that they did an ultrasound on my stomach because I wasn't able to really hold the food down either. And they said that it was my gallbladder, that it wasn't my heart. And so I had to make appointments and go see a specialist for my gallbladder, and I did that. And they actually came back and said it had nothing to do with my gallbladder, it was all my heart failure and my heart disease.

And then I went to go see my cardiologist this past summer, and he noticed that my tricuspid valve was leaking. And that I would need to be referred to Mayo Clinic to get help with that. That took about three months. So I actually got appointments at the beginning of August or October 2022. And before that, I noticed that I had a lot of fluid that I was retaining as well. And the fluid, I had been on such a high dose for the Lasix, and that actually stopped working. So I was just retaining fluid. I was tired all the time. I couldn't figure out how to get this fluid off.

And so I actually ended up talking to my local cardiologist. And he recommended that I come there and get admitted into the hospital. So I actually wasted another 10 days there, where they couldn't actually get the fluid off. So I was in the hospital then. And then I got discharged and then I actually came to Mayo Clinic the next day.

Arrival at Mayo

By the time I arrived at Mayo, honestly, talking with Dr. Burchill now, I felt like after my heart surgery and all of that, I felt like I was meeting him for the first time. And actually, my very first appointment was with him. I don't remember him. I don't remember. He actually came in and said: 'We need to call an ambulance. We need to get you admitted to the hospital. You need to go into surgery right away.' And I don't remember any of that. My parents can tell me that. The doctors can tell me, fill me in on the blanks. But it feels like a dream where you only remember certain parts of it. I didn't remember Dr. Burchill. I didn't remember surgery. I didn't, I mean, there's very limited parts that I actually remember. So I was honestly a lot sicker than I had actually realized, then that I was.

I'm very thankful for Mayo Clinic. Very thankful for my appointments. And that I did get in, and I was seen and got to have surgery. But I do think that the waiting for three months was a little long, too."

More stories about congenital heart disease

• Congenital heart disease through life: Mayo Clinic experts explain changes to expect
• Mayo Clinic Q&A podcast: Innovative procedures for kids with congenital heart disease
• Connecting Patients: Talking about congenital heart disease

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