… maybe a car accident?” The team of doctors are staring at my mom and I. I got a confused look and we both said no at the same time. Then they began to explain to us that my diaphragm was permanently paralyzed and I would need to be on the use of oxygen indefinitely. Well, indefinitely has turned into almost 2 years. And as I sit here, I am currently trying to get the water from my humidifier out of my nasal cannula because it started going through the line. A lot has happened in these 2 years, but what’s stayed the same is the tube that I wear on my face every day and the cord I’m attached to… exactly 12, 25, 50, or 75 ft away. This is the story about my lungs.
In the summer of 2019, I started to see an endocrinologist because I was diagnosed with hypothyroidism due to Hashimoto’s. I was drinking very large quantities of water. I’m talking 200-250 oz of water and she was concerned I had a disease called Diabetes Insipidus. I was admitted into the ICU where they forced me into dehydration to be able to check my urine output. While completing the long test, my oxygen levels dropped scary low to 70% and continued to keep dropping until they put me on oxygen treatment. They kept me overnight in the ICU and the whole next day. Then, they sent me home with o2 therapy, and that’s where it all began.
The next week, my pulmonologist suggested to come into the hospital to have pulmonary function testing (PFT). So we went to the hospital and did the whole shabang, including a shunt study, lots of ABG’s and multiple Point of Care (POC) blood gasses. For those who don’t know what those are… a shunt study assesses heart and lung circulation and POC blood gasses are just a group of tests to check your pH and amount of oxygen and carbon dioxide present in the blood. It all showed that the right side of my diaphragm was completely paralyzed. Like this post started out with… us, nor them, could make sense of this finding because of its rarity. They discharged me with the plan of care being I would go through more extensive PFT testing outpatient and I would remain on continuous oxygen at 4 liters.
I was taking selfies a couple of months ago and I was asked why I don’t take my oxygen off for pictures. I didn’t really have an answer, all I said was, “I guess it’s just part of me… I don’t think twice about having it on”. I had to let my own statement sink in because I had never thought about it in that way. My oxygen is honestly the biggest nuisance because it is SUPER high maintenance. At home, we have a large oxygen concentrator that connects to a hose either 12-75 feet long so I am able to walk around the house. It could go longer, if you needed to, and then that connects to my cannula. When we aren’t home, I am connected to an oxygen tank that on 4 liters only lasts 3-4 hours. On long hospital days or drives, it can be difficult bringing enough tanks and changing them out throughout the day. It also gets caught on the dogs, or a corner, or you went around the table the wrong way… you have to wind it all up and check for kinks. It’s honestly just more annoying than anything!
I don’t think I will be on oxygen forever. I was going through medial records from my kidney failure in 2016 and when they did their initial work up, images showed my right diaphragm was severely elevated. Previously they have also found ground glass opacity, atelectasis, and I do have a history of Pulmonary Embolisms. My right lung is still extremely elevated and doesn’t work great because of it’s underlying diaphragm paralysis and inability to expand, so my left lung and heart do some extra work for it. I will need to get into pulmonary therapy to learn how to breathe on my own again, but we aren’t tackling that mountain anytime soon. For now, my lungs are stable and we hope to keep them that way! If any of this relates to you, or you have any ideas… please reach out to me! Thank you for reading!!
THE UNDIAGNOSED 