Tea resident, Briahnna Thooft, faces ongoing battle with rare heart condition
After complications from foot surgery, local resident, Briahnna Thooft, learned a congenital heart defect has been missed her entire life. Thooft has undergone two surgeries and countless medications to help her body fight for its life. A GoFundMe has been set up to help cover the cost of travel and medical expenses.
At 20 years old, Thooft had her fourth foot surgery and through the healing process began to develop chest pain.
“I started experiencing terrible chest pain, shortness of breath, and very high and low heart rates,” she said. According to the Mayo Clinic, a normal heart rate for 20-year-old women is 60 to 100 beats per minute (bpm).
“My heart rate would go up to 220 bpm just sitting on the couch and would get down to 40 bpm at times,” she added.
Concerned for her health, Thooft made her way to the local Emergency Room (ER) to be checked out. Knowing of her previous surgery, the ER Department began checking lab results for blood clots, but when the results came back negative, a CTA scan was done to look at Thooft’s heart where a congenital defect was found.
Thooft’s specific congenital defect occurs in one in ever 12,000 births.
“After the CTA scan, I was admitted into the Cardiac Unit at Sanford for four days which was scary as I’ve never really had to go to the hospital, and that weekend there were two rapid responses called on me, and so many tests on my heart. They told me it was going to kill me,” Thooft said.
Doctors knew to get Thooft the best care, she would need to be sent to the University of Minnesota which specializes in congenital defects. An unroofing procedure was performed on November 22, 2022.
“This surgery involved going through the heart muscle, leaving the right coronary artery in the wrong spot but moving some heart muscle so the artery can expand. The surgery lasted five hours and I was on a bypass machine for one hour, but my heart came off the bypass machine really well,” she said.
This surgery lasted eight months before Thooft began experiencing complications.
“I got very, very sick with what they thought was pneumonia. It collapsed my left lung, and the infection spread to my heart. This caused pericarditis, and a pericardial effusion. Pericarditis is an infection in the pericardium (sac that surrounds and protects the heart), and the effusion is fluid buildup around the heart. I was misdiagnosed for a while, which put me in heart failure,” she said.
Thooft continued to experience 15 episodes of pericarditis over 13 months and has been on high dosage steroids for that time.
“I take about 20 medications a day, these meds are just trying to keep my heart as healthy as they can, and stop me from retaining a lot of fluid,” she said.
Any illness can be life or death to Thooft, and she takes that seriously.
“A runny nose for me goes right to my heart, so after having so many problems, and being in the hospital multiple times for fluid around my heart, infections my heart, and kidney issues, my heart started to swell, the Mayo Clinic decided I needed another open-heart surgery as soon as possible,” she said.
The next surgery Thooft needed was a very rare surgery called a pericardiectomy in which the surgeon goes through the sternum and remove the pericardium, the sac around the heart.
“This surgery took nine hours long. It is a very hard surgery, and they really have to manipulate the heart and move it around. I was put on bypass again, so they stopped my heart another time. I was on bypass for an hour again and my heart came off pretty well,” she said.
Although Thooft was only 22 at the time of the surgery, it was still difficult to recover from.
“After surgery I had many lines, and 4 chest tubes. I had a central line, a femoral line, arterial line, 4 chest tubes, a catheter, 3 more IV’s, and a wound vac. It was a lot. When they pulled my femoral line, I started to hemorrhage. When that happened, it kept me on the ventilator for a while longer, because they were using sandbags to get the blood to stop. I then started going into A-fib. So, they put me on medication for that,” she said.
Recovery from the surgery has taken its toll on Thooft’s body.
“I went home after a week in the hospital, and a week after I got home my incision ruptured open. I apparently am allergic to the internal sutures, and due to the very high doses of steroids I’m on, nothing will heal. I have only been able to complete 10 sessions of cardiac rehab, but I should be graduated from rehab as of 2 months ago. Then 4 weeks ago, about the middle of January, the infections around my heart came back. Mayo Clinic has said they have never seen this happen after having the surgery,” she said.
Due to the complications, Thooft needs a self-injection medication called Rilonocept.
“We are currently waiting for that to get approved by insurance. It is about $100,000 a month for 4 doses. Once that gets approved, I will start that. But Mayo Clinic is unsure what to do next, they never see this happen. I go back up in two weeks to see the surgeons and the pericardial disease doctors. I will find out more once I’m there,” she said.
Thankful for her family who has been there every step of the way, Thooft knows she would not be able to do this without them.
“My family has been here for me to help me get through everything. My mom is always here for me, my dad passed away seven years ago. So, it’s my mom, my two siblings and I that live in Tea. My mom is always working hard for all of us, and she has taken a lot of time off work,” she said.
To help cover some of the costs, a GoFundMe has been set up to not only raise money for medical costs, but to also have a place to follow along with Thooft’s journey.
“This was set up because we must travel so often for my care, and because I have been off work for so long. I have been in the hospital so much this year, and was in the hospital for 8 days, 3 weeks before my surgery. It is also a lot to go up to Mayo Clinic and be there anywhere from 3 days to a week. Hotel, gas, food, bills, and it adds up quickly. GoFundMe is a good way to follow my story. We try to keep that as up to date as we can,” she said.