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Jan 25, 2016 Latest post:
Dec 5, 2017
Pectus Excavatum, what is this strange word I keep hearing. Starting in 2013 I began having difficulties with swallowing food and food getting stuck in my esophagus. It was rare, but it happened enough to be a bit alarming. I didn't see a doctor about any of this until early 2015. I was referred to a GI doctor who thought my GERD was causing my problems and scheduled an Upper Endoscopy. In the Spring of 2015 I started to become tired easily and short of breath with little exertion. I just thought I was out of shape and tired from caring for my two small children, again didn't think much of it. I also lost a lot of weight, without trying, in a short amount of time. At first I thought, ‘hey this is great, I’m finally losing the baby weight from my last child’. But then the weight wouldn’t stop coming off.
June 2015 I had an emergency endoscopy for a food impaction. When the doctor came in just before the procedure he saw the upper part of my sternum and said ‘You have Pectus Excavatum, may I take a look?’. So I opened my gown slightly for him to see and he mentioned the indent in my chest could be what was causing the food to get stuck. This was the first time I ever heard of this, and he is the first doctor to ever mention my chest was not normal. It was normal to me. I have had a small ‘dent’ in my chest for as long as I can remember. I never though anything of it, I didn’t feel different or think I looked different than anyone else. After the Endoscopy the GI Dr thought I may have EOE, a nasty auto immune disorder where your esophagus basically attacks itself when eating certain foods. I came home and researched Pectus Excavatum and from what I saw online, and the look of my own sternum, I pushed this aside and said mine wasn’t that bad. No way it could be causing my problems. EOE can also cause shortness of breath because of the inflammation in the esophagus, so I was pretty certain this was what I had.
I went on a 7 food elimination diet and hoped to feel better… I didn’t, I only felt worse because I wasn’t getting the proper nutrients. I had a second endoscopy with biopsy that was negative for EOE. I started eating somewhat normal again, and I eat ALL the time. Yet, I still haven't gained any wieght. A few more months went by and I was still tired beyond words and very short of breath. To even talk while walking would cause me to become dizzy. I started blacking out and feeling very dizzy and light headed often. Then my heart started to beat in a strange way. It would race as if I had just ran a mile at a full sprint even when I was just sitting. It would happen at random times and typically last for a short while. One day it started beating out of control and didn’t stop. I felt sick, tired, weak, dizzy, and finally called the doctor. They did an EKG on me that was abnormal and sent me to a Cardiologist. The Cardiologist did another EKG and said my heart was beating like I have a pulmonary embolism. He said a bunch of scary things that I can’t completely remember and put in a work order for a CT scan to check for blood clots. He then got up and came over to give me an exam and as he was about to listen to my heart he said, “you have Pectus Excavatum”. That strange word again…what is this. He then backtracked a bit and said it was likely my Pectus had turned my heart, causing it to beat the way it was. I was put through a bunch of tests; stress test, echocardiogram, 24/7 heart monitor for 4 weeks, blood tests, the works.
I came home and looked at myself again and noticed a huge difference in my sternum from June, when I had last looked into Pectus Excavatum. The center of my chest was no longer just a dent but a large dip. It started about two inches down from my collar bone and went all the way down to my stomach. How I didn’t notice this before, I’m not sure. Probably from chasing after my kids all the time. Who has the time to stop and look at themselves in the mirror right!?! I asked my mom and sisters to come over so we could compare our sternums and sure enough, I looked vastly different from them. At this time I began to do more research on Pectus Excavatum and realized most, if not all, of my health issues lately fall under this. I was referred to a Cardiotharasic Surgeon, the only one in my state who handles Pectus Excavatum in adults. I had a special CT scan done that shows the displacement and compression of my heart and lungs while breathing in and out. This is important because my sternum compresses my heart even more when I breath out. This scan can also show what your haller index is, anything greater than a 3.25 is considered severe. Mine is a 4.6. The left of my heart is being pushed into my left lung. The right side of my heart is being compressed between my sternum and spine. It wasn’t pretty. My sternum is sunken in and slightly turned. My ribs on both sides are not where they should be. The right side of your heart is what pumps the blood to your lungs so you have enough oxygen. Well no wonder I can’t breath and my heart is always racing… I’m not getting the proper blood flow and oxygen my body needs.
Three doctors came into my room, and the appointment took nearly two hours. Thank goodness my husband was with me. I honestly don’t remember most of it, just the important stuff. Like this will only continue to get worse over time if it is not corrected and the two surgical procedures I can choose from, the Nuss and the Ravitch. What I wanted to know most is why now, why now did my sternum collapse and what’s to stop it from happening again. The doctor couldn’t answer that question and said if people don’t have issues as a kid they tend to have issues in their 30’s and 50’s. Lucky me I’m in my 30’s. This is a chest wall disease that people are born with and not everyone with Pectus Excavatum is symptomatic. Unfortunately I am. I wanted to run as fast as I could in the opposite direction. All I could think was this isn’t fare, I don’t want to go through this. But, I also know I can’t continue on this way either. Oh, to be able to take a deep breath again, to fill my lungs with oxygen…it sounds lovely! To run and play with my kids again. To walk up a flight of stairs and not feel dizzy and out of breath. But the journey to get there is incredibly difficult and scary. I thought of a story my kids like me to read them about these kids who go on an adventure and run into different obstacles that seem scary or challenging and they say ‘we can’t go over it, we can’t go under it, we can’t go around it, we have to go through it’. When I feel on the brink of breaking I think of this and tell myself there is no other way around this but to go through it. God doesn’t give us more than we can handle right!?! So I must be cut out to handle this. I am trying to keep a positive mind. I’m just scared to go through this and still not be well. To go through such an invasive procedure and still have issues to deal with seems almost to much to handle.
After lots of research and reaching out to others who have gone through this I decided to have the Ravitch procedure. Basically the doctor will open my chest, remove the damaged cartilage, and any bones if necessary, pull my sternum and ribs out to where they should be. Reattach the remaining cartilage to my ribs and sternum and hold it all together with metal bars and wires. The bars and wires will be removed roughly 6 months later with another surgery. My recovery will be long but hopefully with the support of family and friends I will make it through this in good health both physically and emotionally.
I am afraid of the impact this will have on my kids and my husband. I stay home with my kids and have always been there for them. I will not be able to hold them or pick them up for several months. This will be VERY hard for all of us. It brings me to tears just thinking about it. I rarely spend a night away from them, and if I have it’s only been two nights at most. I will be in the hospital for about a week after the surgery. For now I give them extra long hugs and snuggles as much as possible. The mind is a powerful thing and I am trying to wrap my mind around what is to come so my family and I can make it through this. It will be rough, the toughest thing by far I have ever had to do. But I believe in positive thinking and the power of prayer.
So, if you are reading this. Please pray. Pray for my family and for myself. Thank you!