My Nightmare — and a Turning Point
For a few years now, I would say approximately 3-4, I have had issues breathing. It started slow, mostly when I was hiking, biking, snowmobiling… but in 2019 things took a turn for the worst, and became not only concerning, but scary.
Feeling like I couldn’t ever catch my breath, not even being able to get up a few stairs before I had to stop just to breathe… it was after finally after I had an episode while visiting Jackson, Wyoming for work and I was struggling to breathe to where I thought I would need to go to the ER that I started having nightmares. Nightmares of not being able to breathe, not being able to do the things I enjoy, hiking, riding my bikes, snowshoeing, etc… I didn’t know what to do. I blamed it on being out of shape and not staying active enough. I couldn’t be as active as I wanted to be, because I couldn’t breathe.
It was my endocrinologist who pushed me to get checked out after he noticed that I had developed a significant stridor within a few visits over the course of a month. Informing me that something happened that wasn’t okay, that difficulties breathing and developments of a stridor (wheezing) was not normal. Shortly after I met my current PCP and received a diagnosis.
Surgery & Major Relief
I have subglottic stenosis (SGS) one manifestation of my active granulomatosis with polyangiitis (GPA). Initially, my trachea was open 60% when I was first diagnosed with GPA. It had been slowly progressing over a few years, and it was my breathing issues that finally lead to my diagnosis. On January 15th I saw my care team at the University of Utah, where after a quick scope it was determined that my trachea was now only 40% open. I had two choices.
- Procedure under general anesthesia comprising:
– Microscopic laryngoscopy with dilation
– Microscopic laryngoscopy with injection of kenalog (steroid)
– Microscopic bronchoscopy with CO2 laser
– Mitomycin-C application
- In office intralesional steroid (kenalog) injection (ISI)
Because of how narrow my trachea was (even though it is not the worst out there) and that surgery would provide immediate relief, opposed to a slow progression with the injections, the choice we made for surgery, and we scheduled it for January 28th.
Waking up from anaesthesia wasn’t as glamorous or fun as I was hoping it would be. I didn’t really know what to expect from this procedure; I was under 10 the last time I had a major surgery, so this was almost a new experience for me. Initially I was shivering, but my lovely nurse took care of that. The next thing I noticed was that I could breathe! I never realized how much my breathing was restricted until it wasn’t anymore. There was some pain from the procedure, but I was feeling good. No longer do I hear the rush of air from my breath, I didn’t even have to think about it, or feel like I was forcing it or gasping for air.
Just was there, with an update from my doctor and before and after photos!
A Breath of Fresh Life
I am still swollen and sore. Resting my voice as the doctor ordered, still not up for eating a burger. But I can BREATHE! It’s something that is ineffable. I really can’t find the words to describe the difference… it is something that you would just have to experience, but I don’t recommend it.
While this isn’t a permanent solution for my condition there are things that we can do, one of them is continuing on with the in office injections to help keep my trachea open. SGS can be a potentially fatal manifestation of GPA, and presents a high morbidity, and more often than not it requires repeated interventions because of restenosis. With regular checkups, and injections we are hoping to avoid any more airway problems.
Aside from all of this there is still more upcoming appointments, treatments, and checkups. All just a part of what comes with having GPA. Next up is an appointment with part of my U of U care team to check out my sinuses and ears, then it’s to the rheumatologist for kidneys and eyes. Soon I will also start my Rituxan infusions, but a date has yet to be set.
Despite all this, I feel wildly optimistic. I know this will be a continuing part of my life, but I’m not about to let it slow me down… well not that much, anyway. Accepting the good days and the bad is all a part of this, and there will be some bad days. Days when I can‘t get out of bed, or just don‘t feel like it. Knowing my limits and leaning to heal is a big part of this journey. It’s the hand life has dealt me, and I am, if nothing else, stronger because of it all.
- Horta-Baas, Gabriel et al. “Subglottic stenosis in granulomatosis with polyangiitis (Wegener’s granulomatosis): Report of 4 cases.” “Estenosis subglótica en granulomatosis con poliangitis (granulomatosis de Wegener): presentación de 4 casos.” Reumatologia clinica vol. 12,5 (2016): 267-73. doi:10.1016/j.reuma.2015.10.009
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This is my personal journey with GPA.