I have been working up to writing this post for the past 22 months. This is, in part, because I haven’t ever shared anything this personal on social media, and partly because I’m still “in it” … I kept waiting to be “better” and “on the other side of it” so that I could share the story in hindsight. But today I have life in my body and (literally) breath in my lungs, and I need share about God’s goodness and His miraculous hand in my life. No time better than now as we ring in another year! (*graphic medical images to follow*)
The end of 2021 proved to be an explosive punctuation mark on a year that had already marked our family with 27 losses (only one of them was Covid-related) – the most we’d ever seen. Then, on December 7, things got very scary for me but I wouldn’t know just how scary for another three days. I’d just made plans that afternoon to fly to Cabo San Lucas with my cousin Anitra and my Aunt and Uncle for Christmas – it would be the first holiday I didn’t spend with my parents but they agreed I needed the break after the year we’d had and to celebrate where I was in my tenure process. So I was grading papers in my recliner when I dropped my pen on the floor. I bent over the side of the chair to pick it up and heard a loud pop in my right shoulder. Immediately, I felt a familiar pain that I’d been experiencing on and off for the past eight or nine years. It always felt like someone had driven a spear through my shoulder and out the front of my chest, and it had always come out of nowhere. The only difference was the *pop* — that was new. I suffered through not being able to lay on my back or on my right side for the next few days and I even tried sleeping sitting up. Nothing helped. Except for the severe shortness of breath, the pain was a familiar acquaintance, so I pushed through and sucked it up. The only problem was that with every day that passed, it got harder and harder to breathe. I know you might be thinking, why didn’t I just go to the ER or call the doctor? Well, I had been to the doctor on more than one occasion and was misdiagnosed, but what did I know at the time? One doctor basically diagnosed me off my description of what I was feeling, ran no tests and determined that I’d pulled a muscle and that Advil and minimized activity would fix the problem in one to two weeks. The second doctor listened to the crackling and gurgling in my breathing and told me I had asthma and prescribed me an inhaler (I had never had asthma my entire life, nor any problems breathing for that matter). So the following four or five times that this occurred over the eight years leading up to Tuesday December 7, 2021, I’d just sucked it up and dealt with the pain until it eventually resolved itself.
Now it was Friday, Dec. 10, 2021 and the difficulty breathing had progressed to near suffocation. I’d miraculously made it through the night that I did not think I would survive – no doubt because of my mother’s prayers and God’s mercy and grace. I ended up leaving my former student’s wedding early and going to urgent care after it took me 20 minutes to recover from walking from my car to the lobby. It felt like there was a a vice grip tightened around my chest keeping me from inhaling. My mom (who was in Santa Maria) insisted that I go to the urgent care and insist that they give me an x-ray and run some tests (which had never been done any of the other times I’d gone to the doctor in the past, mind you). So I prayed the entire drive back from Thousand Oaks to Northridge. When I got to the urgent care the line was wrapped around the building. I decided to go home and suck it up another day because I didn’t want to risk getting Covid on top of already not being able to breathe… but my gas light came on as soon as I got in the car and I needed to fuel up. I mustered the energy to do that and by the time I passed by the urgent care again, the line had disappeared! I went in and asked for the x-Ray and the receptionist said they couldn’t take me there because there were 20 people ahead of me and they closed in 45 minutes. She asked me if I could drive to the Tarzana branch 20 minutes away, because there would be no wait there and said she would call ahead for me. I was tempted to go home first and change my clothes because my feet were tired but my mom insisted I go in my formal wear and assured me I wouldn’t be standing up much longer!
When I got to the urgent care, I was the only patient, so the doctor came out to talk to me while I filled out the paperwork (in my heels and my black and white formal dress). I tried to explain between gasps what was going on and she offered me a steroid. I persisted in asking for the x-Ray which I was finally granted. The nurse who attended to me was very kind. She told me I looked like a princess (okay, good call, Mama. I needed that mood-lifter!) and then she let me know that my oxygen reading on the pulse oximeter was concerning — going from 99% down to 88%, up to 94%… all over the place. When the doctor came in with my results she was pale in the face and my heart dropped into my stomach. I thought she was going to tell me I had a tumor in my chest but instead she said, “I don’t know how you’ve been walking around like this for four days but your lung is completely collapsed. The paramedics are already on their way here to take you to the hospital for emergency surgery.” The worry in her eyes scared me and I started crying. She said “Oh, don’t worry, sweetie. We are going to take good care of you. Has no one ever taken an x-ray of your chest?” I thought to myself that I had to practically beg for one that night! Apparently the way I presented did not at all match the severity of my condition and I’m guessing that is why she offered me the steroid instead of suggesting the x-ray herself. When the paramedics got there I got the surreal feeling that I was a guest star on an episode of Grey’s Anatomy or ER! There were four of them and they were moving so fast it was all I could do to try and maintain any modesty at all with just that skimpy examination gown to cover me up! Once they got me into the ambulance I asked if I could call my mom. The paramedic said with a sense of awe, “I don’t know if you understand how serious this is. Based on what the machines say you shouldn’t even be conscious right now.” I replied that it was only the grace of God, because I knew that it was. My mom called my brother, Geoffrey, who was on duty that night and he came over to be with me in the hospital, which I was extremely grateful for.
So, I was rushed by ambulance to the hospital for an emergency procedure to repair the complete spontaneous pneumothorax (collapsed lung) that I had lived with by the grace of God for four days. Have you ever overheard someone talking about you and not known how to feel about it? Well, I heard the residents talking about me outside the curtain (do they actually think that closing the curtain creates a cone of silence? Because I can assure you, it does not!) and the conversation went something like this: “Complete pneumo? Yes, complete pneumo. How long has she had it? Four days. Four days?! How is she still conscious?!”
The ER surgeon who called me “one tough cookie” (mind you, I wasn’t trying to win any awards or anything, was just in survival mode) was concerned about admitting me due to the influx of Covid patients so she told me she was going to try a less-invasive procedure (I later learned it was called a thoracostomy) to see if she could send me home to recover. She said the likelihood of it working was 50/50, and it involved puncturing through my rib cage with a sharp-ended tube about the diameter and length of my pinky. The tube (a one-way valve) had a box attached which they taped to my side. The purpose was to aspirate the air in my pleural cavity as I inhaled in order to allow my lung to re-inflate. It seemed to be working so the doctor sent me home (to my brother’s house; he didn’t want me home alone) with the tube inserted and instructed me to report back the next two nights for x-rays to make sure the lung was staying inflated. I spent the entire night coughing up fluid and wasn’t breathing much better. The next night (Saturday, 12/11/21) I reported back to the ER and was greeted by the receptionist who informed me that I was their miracle patient and the entire ER had been talking about me since the night before! That was unexpected – almost as unexpected as me finding out that this first surgical attempt from Friday night didn’t hold up (the tube slipped out). I was admitted for a more invasive surgical procedure to re-inflate – this one I would be in the hospital for three days with the tube inserted.
I got the tube removed late Monday night and Tuesday’s x-rays showed signs of a sunken-in spot in my lung that was possibly the start of another pneumothorax so they kept me overnight to monitor. Wednesday, the pneumothorax had increased in size so they ended up scheduling a third surgery for that evening. This surgery would involve a bigger tube insertion and a process called a wedge resection and subsequent pleurodesis (which meant cutting out the damaged lung tissue and then adhering my lung permanently to the wall of my chest to prevent another collapse in the event of another pneumothorax).
Apparently, the symptoms I had been experiencing over those previous eight years were misdiagnosed partial pneumothoraces that my body had been able to correct on its own. But on December 7, it was a full collapse — the *pop* I heard and felt in my shoulder was my lung rupturing and the suffocating was due to the deflation, which my body could not correct it on its own.
After nine days in the hospital and three different lung surgeries, I ended up being diagnosed with a rare condition called a catamenial pneumothorax, which means that some mysterious way, the lung rupture and subsequent collapse was connected to my menstrual cycle. My thoracic surgeon informed me that he’d done exploratory surgery of my thoracic cavity while in to perform the pleurodesis. That exploration and the pathology report that was done on the lung tissue that was cut from my lung both revealed no endometrial residue of any kind in my chest, which is what is often the cause of this rare type of pneumothorax. I was sent to see my ObGyn who just happens, at 70-something years of age, to be the only doctor he knows to have ever seen a catamenial pneumothorax—identical twins in their 30s, who are now in their 50s and doing completely fine. The cure: he overdosed them on hormones in order to stop their cycle. His words to me were “So, that’s what we do. Assume you have endometriosis (which I have never been diagnosed with nor had symptoms of) stop your cycle and then you won’t blow out a lung. That, or get pregnant. Either way, stopping your cycle is the only thing that will stop this from happening if this condition is what you have.” I felt extremely uncomfortable with this solution because 1) I had been on birth control for two very short stints at two different times in my life as treatment for skin issues and I did not respond well. I knew immediately that I didn’t like what it was doing to my very regular body clock… and 2) how did they know for sure that was what I had? So I resolved with my thoracic surgeon that we would wait and see. Maybe it was a fluke, a coincidence. Well, I was instructed not to fly or expose myself to elevation changes until my newly assigned pulmonologist (which I had never had or needed before in my life) cleared me. I was cleared the end of March.
Then, April 18, 2022, I started my cycle around midnight. Around 2:45, I was putting on my shoes and suddenly developed chest pains. This time I called the urgent care doctor who had called the ambulance for me back in December because she was so shaken by the incident she called and texted me every day I was in the hospital and had been checking on me since. She instructed that I go to the ER immediately because I was now a “high risk patient with an extremely high pain tolerance” and I couldn’t trust how I was feeling on a scale from 1 to 10. Well, they admitted me and sure enough, I was having another pneumothorax which confirmed for my thoracic surgeon that I did, indeed, have this rare lung condition. However, because of the pleurodesis, my lung remained inflated despite the extra air that had mysteriously made its way into my pleural cavity and settled between the fissures of the lobes of my lung, causing a 30% compromise of my lung capacity (hence the chest pain and difficulty breathing).
He assured me that the situation was no longer life threatening as it had been in December. But he also told me that I was going to continue having these incidents for the rest of my life, and that was why they’d done the work to secure my lung to my chest wall. This was when I learned that the pleurodesis was never meant or able to prevent me from having a pneumothorax, but rather to take the life and death scenario off the table in the event that I had another pneumothorax. At this point I still did not want to go on hormones because I knew they weren’t right for me. My surgeon said I could muscle through (as I had been without even knowing it) with pain medication in lieu of going on hormones permanently. So, I asked my pulmonologist if he would be okay with me trying acupuncture… I’d heard that some women got acupuncture to treat hormonal symptoms from menstrual cycle such as migraines. He agreed with the plan because he said that hormones have their own set of unknown reactions and so many side effects, which he has seen in his patients.
Since starting acupuncture May of 2022, I have been doing better overall since I saw a decrease in the frequency of pneumothorax occurrences but unfortunately, I’m still experiencing pneumothoraces every few months – completely spontaneous with zero warning, which is the worst part. I had managed to go up to four months without having one since my lung collapsed December of 2021. Then last year, 2023, I hadn’t had one since May… Then this past Wednesday (12/27/23), I had another one. Almost eight months clear and a relapse. It was discouraging, to say the least. The scariest part is not that they keep happening — it’s the fact that three of the now eight pneumothoraces I have had since this diagnosis, happened when I was not even on my cycle, which means that the theory about the catamenial pneumothorax is out the window. I am not able to fly because 95% of the time I’m completely fine but no one knows what would happen to me if I spontaneously had a pneumothorax at 30,000 feet – I definitely don’t want to find out the hard way! That being said, I’m also taking suggestions for vacation/getaway ideas and locations that don’t involve airplanes 😉
Today, I enter into 2024 with seven scars to remind me of how God kept me through the most terrifying situation I have endured. They can’t figure out why this keeps happening, but I’m beyond grateful to have made it through that December and through these past two years. I wanted to share this for my own catharsis, to document this testimony, and to thank God publicly for providing for me in the ways I needed most when I didn’t even know what I needed. He is faithful, indeed! I want to thank all of my friends and loved ones who have been up close and personal with me on this journey. Thank you for checking on me and for all your prayers. Even those who have prayed for me not knowing what was going on… I believe prayers are like Advil: they go straight to the parts they are most needed. I’m praying for you to have a blessed and bountiful 2024. God bless and keep you always! 💕🥳💕
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