(See the bottom of this page for my full Pectus Story)
12/13/2018: Hi Pectus Warriors!! It has officially been 4 weeks since my Nuss Procedure with Dr. Jaroszewski at the Mayo Clinic and I feel great!! I am so thankful for Dr. J and her team. I can walk and breathe again at the same time. 🙏🙌🏻 now the goal is to spread awareness about Pectus Excavatum and help others! I have spoken on the radio, my local newspaper did a full story on my journey, and Fox News interviewed me yesterday. I have another radio interview tomorrow. Let’s keep spreading awareness and help others realize they’re not alone, nor are they “crazy” for what they are feeling/ the symptoms they are experiencing.
Read more about my story here.
And my radio segment is here.
To see my Fox News video, click here.
10/22/2018: Here’s my story, short version believe it or not. My goal in sharing my story is to help raise awareness of PE. Maybe this will help a parent who has a child with PE or maybe it will help an adult with PE who has similar symptoms. Not a lot of people know that I was born with Pectus Excavatum (let’s call it PE for short). PE is where the breastbone sinks into the chest, sometimes called funnel chest. Google it, you’ll see some pretty informative pictures. Doctors told me I had a moderate case of PE in my younger years. They told me I had 75% of heart and lung capacity compared to the normal person. They gave me the option to have the corrective surgery at that time. To give you an idea of this corrective surgery, called the Ravitch Procedure, it would require opening my chest up right down the middle, breaking my chest bone to pull it up, and putting bars in place to stabilize it. Then cutting off a portion of my ribs and moving the other ribs inward. At the age of 12, I chose not to move forward with this surgery. I was very active in dance & gymnastics and had no issues with my heart or lungs at that time. It seemed the only reason I would get this surgery was for the cosmetic aspect. However, I was more concerned with just being a kid and staying active. So surgery was not high on my priority list as it was not impacting my physical health. But don’t get me wrong… it definitely played a role in my self image growing up. It was the reason for one of the first times I stood in front of the mirror and hated the way I looked. I would carefully examine how every top, swimsuit, bra, etc would fit my chest. Plus, I was the only one of my friends with a concaved/bowl chest. I grew up with people saying “wow- you can probably eat a bowl of cereal out of your chest.” This seemed to be the popular ‘joke.’ But hey, it was my life and that’s how it was going to be, so I tried to join in on the joke and laugh it off. Fast forward to my high school days. As a freshman, I couldn’t run a mile. Doctors told me I may never be able to. Therefore, I made it my goal to run. A wonderful woman by the name of Susan Savage taught me how. She would come over to my house and run with me each morning before school. She was patient with me. She understood my situation with PE and worked to help me control my breathing. By the end of high school I could run two miles. I went to college and continued running. I even completed a half marathon and ran the whole thing. I had never been more proud of myself. I trained for this for seven months. PE did not stand in my way. Running is my way of relaxing. It allows me to release some stress and clear my mind. It’s been more therapeutic for me than anything. A year later one of my dreams came true…I became an NFL Cheerleader for the St. Louis Rams. It was the best year of my life. But I do recall one instance that will always stay with me regarding my PE. I was standing on the field during a game when my ambassador motioned for me to come see her because there was ‘something on my uniform.’ But once I got over to her close up, she didn’t see it anymore. What she actually saw was a shadow of my PE. Because you see none of my uniforms ever touched my chest. It caves in so much that it does indeed look like a deep hole or shadow where material should lay. I had to pull my top down constantly at every game. She wasn’t wrong in what she saw, but at that moment on an NFL field in front of thousands of people, I felt naked. I thought if she could see it, everyone else was probably staring at it too. Fast forward again to a few years later. Out of nowhere I started having heart palpitations, pressure in my chest, shortness of breath, and a fast heart rate. I got an EKG done that showed I have a Right Bundle Branch Block, but doctors were not concerned. They also saw that I have mitral valve prolapse. Doctors put me on a 30 day holter monitor. When we got the results back, it revealed nothing. About two months ago I was out of town and riding in the car to dinner while singing and dancing. Then all of a sudden I couldn’t see or hear anything. I couldn’t breathe, my heart felt like it was going to explode, my chest felt like someone was inside punching to get out, and I couldn’t feel my arms or legs. This was my first real “episode.” We called an ambulance to meet us at a gas station. They quickly ran an EKG and some tests. My heart rate would drop low into the 30s then jump up to 170bpm and it would repeat this pattern for minutes at a time. All I remember is the paramedics saying “your heart is beating really fast Danielle…. we have to get your oxygen up” and them screaming “STAY WITH ME DANIELLE.” This moment changed me. It was the first time in my life that I thought I was dying. The first thing I mentioned to paramedics and doctors was that I have PE and previous heart issues. Want to know what they did with me once I got to the hospital? They put me in a psych room and let me be. I lied in that room for hours crying and holding my heart. The pain was now excruciating. They discharged me three hours later with “anxiety” and told me I was just having a panic attack. I WISH I was just having a panic attack. I have dealt with my anxiety since I was in high school. I’ve had my fair share of panic attacks. I know my body and I know when something is wrong. This night is when the episodes started and my symptoms have only gotten worse since then. Once I was back in town I had a pretty severe episode which put me back in the ER. When I got to the ER this time, my oxygen saturation level was 84. For anyone who doesn’t know, normal saturation is 95-100. Basically, it felt impossible to get a deep breath. I spent a week at Missouri Baptist Hospital while they ran every test under the sun. I couldn’t walk a few steps without my oxygen levels dropping and my heart rate skyrocketing. It almost seemed like they were on the right track, but then they decided to discharge me. I had a doctor come into my room and say “we have exhausted all efforts and don’t know what else we can do for you.” She then admitted to not knowing much about PE or how to help me. This is the problem. Many doctors do not know much about PE. About an hour later another cardiologist called my room and said I was his biggest puzzle in the last three years. He too admitted to not knowing much about PE. My doctors told me they would just send me home with an oxygen tank as many people live off of oxygen and I would be fine. Sure, many people do live off of oxygen, but I am a 26 year old who was just running five miles/ day only a few months ago. Sending me home with an oxygen tank with no explanation of what was wrong with me was so hard for me to wrap my brain around. I spent a few days at my parents house before things got much worse. I would have episodes 2-3x/ day and my symptoms were much worse. It looked like I was having a seizure, couldn’t breathe, and my heart/chest pain was out of control. My cardiologist in Farmington admitted me to Barnes Jewish Hospital. Right when we got there I had another episode and my team of doctors got to witness it. My cardiologist on that team told me I would not be leaving the hospital until she got to the bottom of this. For the first time in weeks, I had hope these doctors would help me. Again, they ran every test under the sun. They too did not know much about PE. But they did their research. They learned ways to determine if my PE was causing my symptoms. My ECHO test revealed a lot. Typically, ECHOs are done lying down only. But here’s the thing- I am usually not symptomatic lying down. It’s only when I sit or stand that my heart rate jumps and my oxygen drops. Therefore, they requested a standing ECHO. The Tech had never done a standing ECHO and was considered their most senior Tech there. And this is Barnes we’re talking about! One of the top hospitals in the country. There were five doctors in the room during my ECHO. You should have seen their faces when I stood up. What they saw on the screen amazed them. They could see I have a hole in my heart. And when I stand it opens and all of the deoxygenated blood flows the wrong way. They could also see I have a right ventricle obstruction. So basically my right ventricle gets pinched off and I lose 60% of blood flow. All of this was only revealed when I stand up. None of this showed lying down! Then I had a cardiac MRI done. The tech at this time had seen one other case similar to mine. Typically, you lay flat on your back for an MRI. At first I laid on my back, then the tech had me roll to my right side. I lost more than half of my blood flow when rolling to my right side. After almost two weeks at Barnes, my amazing team of doctors said my PE has shifted from a moderate case to a very severe case and was causing my symptoms. The Haller Index is the measurement used to calculate the extent of the Pectus deformity using CT scans. A normal Haller Index is a 2.0 and corrective surgery is recommended at a 3.25. My Haller Index is a 4.95. My chest is compressing my heart and lungs. My team of doctors told me I needed the surgery if I ever wanted a chance at getting my “normal” life back. I had done my research and was set on only getting the Nuss Procedure. The Nuss Procedure is less invasive. Surgeons go in thru the sides of my chest and put a crane in to lift up my chest. They then place 2-3 bars in my chest to hold it in place. The bars stay in for three years and then are removed. To my surprise, there was only one surgeon at Barnes who could do PE surgery and he chose not to learn the Nuss Procedure. He came into my room and laid out how the Ravitch Procedure would go, but I was already very familiar with the Ravitch and did not want that! When he started saying he’d cut me open right down the chest, tears flowed. He then told me that I wouldn’t even qualify for the Nuss Procedure, so basically get that out of my head. My encounter with this surgeon was the worst I’d ever had with a medical professional. I told him I would like to get a second opinion and he proceeded to tell me he would not cancel any of his other surgeries if I wasn’t serious about this and if I do get my surgery done elsewhere, do not expect for him to follow up with me during my recovery. Let me remind you- I am in the hospital on a high risk cardiac floor and this surgeon decided to ruin my day (as if it wasn’t worse enough). He left my room on a terrible note. So bad that he came back 30 minutes later to apologize. Outside of this one surgeon, Barnes was AMAZING! I loved my team of doctors. This is when the ALL CALL to Dr. Jaroszewski started on Facebook. Dr. J is the top surgeon in the world for PE surgery in adults. My friend, Liz, started a medical campaign to try to get me on the list at the Mayo Clinic in Phoenix. And let me say THANK YOU to everyone that shared this message to try to get in contact with Dr. J. I truly believe because of you guys it worked. I received many messages of people knowing Dr. J in one form or another. And then a miracle happened- my team of doctors actually got a call back from Dr. J herself!!! She said I definitely DO qualify for the Nuss Procedure and was happy to get me on her schedule. My surgery will be on November 15th at the Mayo Clinic in Phoenix. I am expected to be in Phoenix for 2-4 weeks and will then be able to come home. I found this group on FB for people just like me with PE who have either had the surgery or awaiting the surgery. They give me so much hope. They have told me it’s the worst pain they’ve ever experienced, but that it was worth everything to have it done. These last couple weeks have been hard as my symptoms continue. Some days are better than others, mentally and physically. Anyone who knows me knows that I am a very active person. I love spending time with my family, friends, and boyfriend. I travel a lot. I love my job as a Technical Recruiter at Concero. And running is my passion. I volunteer as a Wish Granter for the Make a Wish Foundation. I was supposed to be in one of my best friends weddings a few weeks ago, but could not attend. PE is restricting me from doing all of this right now. 90% of my days are spent in bed lying down. The most important thing for me to remember during all of this has been ‘it’s going to get better.’ It always does in time. I’ve been down before, but I’ve figured out ways to get myself back up and life was better than before. Although I’m very scared for this surgery, I can’t wait to take my first true deep breath! I am so thankful for all of you that have been there and continue to be there for me through this journey. The prayers, love, and support mean the world to me. Because of all of you, I am staying positive and in good spirits. Everything is going to be ok.🙏