New York City – Part 1

I am in New York and will be sharing some exciting news and vegan restaurant reviews in a few days! First, though, I want to share why I am here. I have a rare childhood condition called Congenital Central Hypoventilation Syndrome, or CCHS. This makes me forget to breathe, which is rather inconvenient. So, I have a trach and am on a ventilator when I am asleep, and I use diaphragm pacers when awake. (You can read more about CCHS and diaphragm pacers by clicking the links.) This is my ventilator set up at the hotel:

This diagram shows the internal and external components of the diaphragm pacers:

This is what the external part of my pacers looks like:

This is what the pacer looks like in front of the ventilator. It only weighs about a pound, compared to over 11 pounds for the ventilator:

This is me out and about in NYC using the pacers and not being tethered to a ventilator:

My goal with the pacers was to use them 24/7 and to not need the ventilator at all. However, the pacers I have now were not placed correctly. They make me breathe, but they also make my vocal cords shut with every breath. That means the trach is the only way air can get into my lungs when the pacers are on, and my trach can’t be removed. I came to New York for new pacer surgery with the best pacer surgeon in the world. If all goes well this time, I will be able to get my trach out by the Fall. So, I am really here in New York for surgery to fix my breathing pacers, but I managed to have some fun too! More on that in Part 2!