Living With aPAP: The Scariest Years of My Life
Living with aPAP symptoms was the scariest and most miserable thing I have ever experienced. My main symptoms were shortness of breath and a cough. I don’t think those labels adequately describe what it feels like to experience those symptoms to the severity that I did.
The cough was constant and intense. And it was more than a cough- it took my breath away. Once I started coughing, I couldn’t stop. It would spiral into breathlessness to the point that I couldn’t get a breath in- and I couldn’t stop it. It was terrifying. Everytime I started coughing, I’d panic, because I knew what was coming.
Violently coughing constantly is so hard on your body. An ENT scoped my throat and found my larynx to be severely inflamed to the point that she didn’t have a reference photo in her office that did it justice. I had constant chest and rib pain from coughing like that. My neck, jaw, and head ached constantly. I would cough until I couldn’t see anything. I would cough until I couldn’t swallow the spit in my mouth.
I avoided everything I possibly could that would trigger the coughing, and it was triggered by so many things. Things like talking, singing or humming, and even laughing were some of the worst triggers. The fits after laughing were some of the worst ones. For 3 years I tried to avoid LAUGHING, because if I laughed, I paid a severe price. That is heartbreaking and it was so so hard. Trying to avoid talking is really hard, especially when you work a people facing job and are in college. Avoiding talking whenever possible meant that I avoided situations where I would have to talk that were not absolutely necessary. This meant that I went to school, work, and then home. I did not participate in the social aspect of college at all because of this. I didn’t hang out with my friends very much and when I did I was pretty quiet and boring, which upset me.
The breathlessness went with the coughing for me- they never happened alone. If something truggered the cough, it made me breathless- if something triggered the breathlessness, it made me cough. Walking (at all) triggered my symptoms. I would avoid getting up to go to the bathroom until I physically couldn’t wait because that 20 foot walk was miserable. Going up stairs destroyed me. Walking up any degree of incline was brutal. Trying to move fast, lift something, do household tasks, and even showering would trigger my symptoms. Doing the simplest things became a minefield. I mapped out every detail of my days down to the smallest tasks to figure out how I could do everything I needed to do with the least amount of movement possible. It was mentally exhausting and overwhelming.
Another severe trigger was smoke, aerosols, or things that were strongly scented. Walking 20 feet behind someone that had on a lot of perfume or cologne, used a strongly scented soap or laundry detergent would trigger it. Second hand smoke is still a severe trigger for me. If there is a fire outside, I can't be outside. If someone is smoking up the stove, I have to go outside. And yes, it is horrible when these things both happen simultaneously. Candles, air fresheners, diffusers, and perfumes sent me into a fit. A lot of these things are extremely hard to avoid outside of your home. (And if you live with other people and have no diagnosis to explain why these things are triggering you (and they have become exasperated with your condition because they are being told by several doctors that you are FINE) it is also hard to avoid these things. )
The feeling of breathlessness is by far the scariest thing I have experienced in this lifetime. It felt like breathing in air that had no oxygen in it. Most of the time I felt like I was drowning- literally. It felt like trying to breathe through a plastic bag. Sucking in air- literally gasping for breath- and not feeling like you are getting any oxygen is terrifying. With these episodes I would often start to see black spots or stars. It felt like I was going to pass out, but that would make me panic because I felt like if I lost consciousness I wouldn’t wake back up.
I developed severe insomnia for that same reason. I became terrified that I might not wake up if I fell asleep. I struggled to find a position to lay down that didn’t feel like I was actively drowning. I slept propped up into a seated position for a while. Eventually I raised the head of my bed so I could sleep on an angle without the back and neck pain that sleeping upright caused. If I laid flat or on my back at all it felt like I was suffocating. If I was sitting up in any degree of recline it felt like I was drowning. I had one specific chair that let me comfortably sit at the perfect angle to feel like I could breathe- and that is where I spent the majority of my life for those 3 years.
My body was EXHAUSTED. I struggled to fall asleep at night but I also struggled to stay awake during the daytime. I was sleeping 12-16 hours a day and still felt exhausted constantly. I would struggle to walk to class and then fight to keep my eyes open. I would take naps in my chair to muster up the energy to get into my bed. I fought to get through every single day.
I had severe brain fog. I struggled to find words. I would lose thoughts before I could finish thinking about them. Studying was difficult to say the least.
I struggled to eat. Trying to get food down while coughing is not easy. When I coughed I would suck air in deeply between coughs. So if I had food in my mouth, that meant it was getting inhaled, which triggered worse fits. I was a slow eater before this started so now it took me FOREVER to get a meal down. It was really hard to physically get enough calories in every day. I started drinking meal shakes to ensure I wasn't starving.
For the first time in my life weight melted off of me no matter what I ate. And it did so at an alarming rate. I was a healthy weight to begin with and then I lost 30 pounds in under a year. All of my bones were visible. I had visible abs. My sit bones hurt when I bathed. My collar bones and ribs were visible. I couldn’t find clothes small enough at some stores. As someone that chased skinny my whole life, it actually didn’t feel good- it felt wrong, and it felt scary.
My hair thinned a lot. My scalp was visible. It was very upsetting at age 20 to be balding. My fingers and toes were often blue or purple. They often went numb and were always freezing. I was generally freezing cold. My nails started clubbing. I had a constant headache, which felt like my head was imploding. My muscles would cramp painfully with the smallest movements.
One of the worst parts of everyday was getting out of bed in the morning. Moving from laying down to sitting up felt like I was drowning, especially if I did so quickly. So I would move my way up slowly to sitting, staying in each position for several minutes until I could catch my breath and stop the drowning. It was a process. It made the beginning of every single day miserable.
There was never a time where I was free of these symptoms for three years before I was treated for aPAP. I lived like this every single day for nearly three years. My symptoms are mild now, thankfully. But I live with the constant fear of "what if I get to that point again?" The fear of feeling the way I did again is terrifying and ever present. And if this is you, or ever was you, I'm so sorry that you can relate to this, but just know that it gets better and you are not alone.
Written By: Karli S, PAP Patient
