” I Need A Tracheostomy, But I’m Scared “ Chapter 66

When I first started having difficulty breathing, I trusted the doctors to tell me what to do.

It was around June 2022 that my ALS was progressing enough where physical activity required me to breathe harder and harder. The ALS clinic tried to fit me for a face mask to wear when sleeping or as needed during the day, but there were a few problems, though. I couldn’t close my mouth to complete the seal and a full mask made me claustrophobic.  My wife was not surprised I couldn’t close my mouth, she always said I would talk just to hear myself talk. Sure do miss those days.

August 13th, the day of my daughter’s wedding, I was rushed to the hospital because I couldn’t breathe. After a few hours I was released and made it home for the wedding. During the wedding I was a little slower than normal, but I made it through. On August 14th I was back in the ER, and a few hours later I was sent home again with nebulizers and told to see my primary care physician. At home, I tried to use the ventilator, but never as much as maybe I should have. What I didn’t know was that I was slowly dying.

After seeing my doctor, I was told I had pneumonia. This was the reason I was having such a hard time breathing. A week later, I was admitted to the hospital to get a tracheostomy. You see it wasn’t the pneumonia killing me, I had CO2 poisoning.

Carbon monoxide poisoning occurs when carbon monoxide builds up in the blood. When too much carbon monoxide is in the air, the body replaces the oxygen in the red blood cells with carbon monoxide. This can lead to serious tissue damage, or even death.  This also occurs when your body can’t express the CO2 by not exhaling properly.  Using the ventilator gets the CO2 out.

I was the sickest I ever had been in my life and it showed. I was 135 pounds and sunken in looking like Skeletor.

Let me first start by saying if you can prevent getting a tracheostomy and still breathe properly, do it. Use your ventilator with the mask as long as you can. For me, my ignorance and stubbornness didn’t allow me to use it enough. I became so sick and then I had no other choice.

That being said, it is the sole mechanical reason I am still here 15 months later. Looking back, I can say I was scared. I was scared to lose my voice, but I overcame that using my phone and now my eye gaze technology. I was scared I would lose my mobility. I overcame that because I was able to walk around with the ventilator until I could no longer walk. We then strapped it to my wheelchair. I was scared I would not be able to breathe, but using the ventilator I get cleaner air because of the filters than breathing toxins in the air surrounding me.

Here’s what you need to know about the use of ventilators.

1. Make sure you and your caregiver are trained before going home. It’s scary not knowing what to do when you first get home. We came home from the hospital to find boxes of supplies, oxygen tanks and accessories piled in the living room. It was very overwhelming. Laura had some training in the hospital but nobody came to the house for three days after we got home.

2. Get two. I thought we were good until one night at 12AM the alarm sounded with a message to get service. We thought we could turn it off and wait until morning. For the next three hours the alarm went off every hour. We called the service number and had someone at the house at 3AM. The first question she asked was why didn’t switch to the other ventilator? That’s when we realized we needed a second one. Another time the screen broke, but because we had the second one we used it and got the replacement the next day.

3. Get enough supplies for both ventilators. Since we have two we keep one on the wheelchair and the other in the bedroom. The problem we had at first with our medical supplier was only giving us supplies for one ventilator, but we were using all of our supplies up too quickly. Don’t let the supplier tell you the hoses or filters need to be changed monthly either.

4. Make sure all of the alarms are working. The alarms are the only way to know there is an issue when nobody is around. There are several different alarms make sure you know what they are and how to set them.

The doctors mean well, but like I have said before, you have to speak up. You are the only one who knows your body best. In my case I have Laura on my side and I would even say she knows me better than I know myself. I won’t admit it if you tell her. You don’t have to be scared and I wish I read this before I allowed myself to get so sick.

Today I feel much better than I did in August.  I breathe better, I go to church, and I've gained enough weight back that I don’t look like Skeletor anymore.

The biggest problem I have now is that I rely on my daughter to shave my face and she keeps giving me a porn stash.

Love and blessings