Yesterday Justin took me to my first appointment with two of the specialists at the University of Utah that I am seeing for my GPA. This appointment was for my subglottic stenosis, and we didn’t know what to expect, but we are more comfortable and more informed with my current status and treatment plan.
We met with my pulmonologist, and my lungs are healthy so no immediate concern for the time being. Moving forward regular checkups and a routine care plan will be a part of life for me. Next came my otolaryngologist, once everyone was present we did a scope through my nose. Down past my vocal cords, about 2cm, is where the inflammation is and where my trachea is narrowing, open only 40%. Below the area of inflammation leading to my lungs looked healthy, a very good sign.
We discussed the other specialists that I will see in the coming weeks, including another ENT for my sinus and ear involvement, and my rheumatologist, who will oversee my complete care plan and who I will discuss kidney and eye involvement. He will also be the one to oversee and adjust my whole treatment plan. So, for now my Rituxan infusions (chemo) are on hold, at least until we meet with the rheumatologist. I am unsure at the moment where this leaves Dr. P (my PCP in Idaho, and the doctor who diagnosed me) and where he fits into this whole plan, but I feel confident moving forward with the team at the University of Utah, and I know they will work with Dr. P and Dr. A as we continue to work towards “remission”.
Before leaving, we discussed the options for treatment on my trachea. One choice was to inject steroids into the trachea, in office, every few months… which would be a slow progression to noticing a difference. The second option, surgery, removing the inflammation and instant relief. They informed me that neither choice is a permanent solution and I will have to deal with this again, but surgery gives me the ability to breathe now, and it might last longer than expected. We decided to move forward with surgery, (MLB, dilation, Kenalog injections), and hope that it will last a good long while. Knowing that if it doesn’t, we will plan to continue forward trying the in office steroid shots, at least until I am advised to do something else.
They schedule my surgery for January 28th. I am both nervous, but also excited. It has been a while since I could breathe. I hope that this will allow me to get back to doing the things I love, riding my bike, hiking, etc… without struggling to catch my breath.
Remission is a relative term for GPA. There is no cure, so by definition remission for GPA is a temporary recovery. That is what we are working towards, healing and stabilizing everything so that the disease is not active. For me this has included serious diet and lifestyle changes that I have mentioned in previous posts. One of the hardest has been giving up my comfort foods, not only because of GPA but also because of the celiac, the Hashimotos, and my overall health. What comfort foods am I referring to exactly? Pastries! I love bread… one of the worst things for me. Flour, or gluten, I am learning is in everything! Sodium and sugar as well… the three main things I need to stay away from are in all my favorite foods. It has been fun learning new recipes, and new ways to alter my favorite recipes to accommodate my new diet.
The adjustments aren’t always easy, but they will be worth it. To be healthy and able to do the things that bring me happiness… and hopefully getting back to trying to start our little family in the coming years.
P.S. As soon as I get images from the scope I will share them. It was not a super fun experience in the moment, but seeing the images after was cool. Justin hung in there during the whole ordeal, but he was a bit squirmy. 😜
Studies on Subglottic Stenosis in Granulomatosis With Polyangiitis
- Taylor SC, Clayburgh DR, Rosenbaum JT, Schindler JS. Clinical Manifestations and Treatment of Idiopathic and Wegener Granulomatosis–Associated Subglottic Stenosis. JAMA Otolaryngol Head Neck Surg.2013;139(1):76–81. doi:10.1001/jamaoto.2013.1135
- Zycinska K. et al. (2013) Subglottic and Tracheal Stenosis due to Wegener’s Granulomatosis. In: Pokorski M. (eds) Respiratory Regulation – Clinical Advances. Advances in Experimental Medicine and Biology, vol 755. Springer, Dordrecht
- Costantino CL, Niles JL, Wright CD, et al. Subglottic Stenosis in Granulomatosis With Polyangiitis: The Role of Laryngotracheal Resection. Ann Thorac Surg 2018;105:249-53. 10.1016/j.athoracsur.2017.07.026 [PubMed] [CrossRef] [Google Scholar]
- Nagato, Toshihiro, Kan Kishibe, and Yasuaki Harabuchi. “Subglottic Stenosis in Granulomatosis With Polyangiitis.” The American Journal of the Medical Sciences 357, no. 4 (April 1, 2019): e13–14. https://doi.org/10.1016/j.amjms.2019.01.005.
- Costantino, Christina L., John L. Niles, Cameron D. Wright, Douglas J. Mathisen, and Ashok Muniappan. “Subglottic Stenosis in Granulomatosis With Polyangiitis: The Role of Laryngotracheal Resection.” The Annals of Thoracic Surgery 105, no. 1 (January 1, 2018): 249–53. https://doi.org/10.1016/j.athoracsur.2017.07.026.