Over the years, my lung function has continually worsened.
At first I needed a bipap at night, before long I started needing it during the day as well and was switched to non invasive ventilation.
My lungs muscles and diaphragm were tightening, and my airway often spasmed so hard I could not breathe at all.
I did well for about 2 years on NIV, but then slowly started having more and more issues and severe hypercapnia and hypoxia in episodes. My oxygen would often sit at around 80% and it was hard to function.
I was told I’d need a trach to continue living.
I said no.
You are probably looking at the pictures and confused. Quite simply when I started to actually die I realized I wasn’t ready. So I spoke to the surgeon again and we made a plan for my permanent trach.
After getting my trach I would gag and vomit constantly and was unable to speak for 3 months before we realized I was allergic to the typical Shiley trach. After switching to the Bivona, life got much better.
I thought my troubles with breathing were over then, and for a while they were.
Then I went into hypoxic respiratory failure and was put on oxygen. Better. Right?
Sorta, I recently learned you can go into acute on chronic respiratory failure after getting septic pneumonia. To put it simply, not a fun time.
Luckily I’m improving and overjoyed I made it through.