Georgia Man Shares Decision About Full Time Ventilator Use

"My advice: Instead of suffering to breathe,
​just go on the ventilator."
--- Matthew Busch

​My name is Matthew Busch, I'm 33 years-old, and I'm from Georgia in the United States. I have Duchenne Muscular Dystrophy (DMD), and my condition causes muscle weakness throughout my body. I can only breathe on my own for about five minutes, as of the last three years. I need help getting bathed, fed, and dressed and need someone with me at all times.

I get depressed and annoyed because of the things I can no longer do. However, I was always taught to never give up and to keep going. I have outlived the age the doctor said I would and have persevered through many obstacles. I got a tracheostomy (trach tube) and went on a ventilator in 2009, when I was 21. I did it as a precaution, just in case I got pneumonia or had a breathing emergency.

At age 26, I still only used the ventilator at night. Then, I started noticing I was having more problems breathing during the day. I was breathing heavily for a year and suffering while staying off the ventilator. I didn't want to go on it full time; I was in denial. A year later, I finally told myself, “It’s time to just suck it up and go on the ventilator full time!”

​I have been using the ventilator for 12 years and have been on it full time for 6 years. My advice: Instead of suffering to breathe, just go on the ventilator.

In my free time I like to play video games, go outside, and I love watching sports. Occasionally, I write songs. I tried going to college but decided that with everything going on with my condition, it wasn't for me. If you want to attend college, at least give it a try. Just because it wasn't for me doesn't mean it's not for you.

Invasive ventilation has helped me to breathe, but it is a burden because I can never be left alone. Also, I can't talk while I’m on the ventilator. (Some can talk on a ventilator, but some can't.) This means I can't hang out with friends or go anywhere without someone who knows my ventilator and related care. I take my mom everywhere I go. I’m just glad I have a mom who can take care of me and has always been there. She can also read my lips.

Some additional advice:

• If you get invasive ventilation with a trach tube, I recommend that you get an eye gaze-enabled speech generating device called, “Tobii Dynavox.”  It has software that can talk for you when you have difficulty talking. It can also help you control a computer.
• Be cautious of germs, and if anyone is sick, try to stay away from them until they are well.
• If you have a trach tube, make sure you suction well, and use inhalation saline solution to help prevent mucous plugs.
• Also, get an insufflator/exsufflator device like the Respironics CoughAssist and The Vest airway clearance system by Hill Rom for chest wall oscillation.​ ​

If you have any questions or need further invasive ventilation advice, feel free to reach out to Breathe with MD, Inc. via [email protected] and ask them to put you in touch with me. They have my permission to share my email address. ​

Editor's Note: 
Each individual who allows Breathe with MD, Inc. to publish their story on this page in 2021 will be entered into a random drawing at the end of the year to win a $100 Amazon gift card!  So, what is your story? Start the process of telling us at https://breathewithmd.org/storyform.html or send an email to [email protected] and we will be in touch. We have volunteers who are experienced writers available to interview you and write your “Living Ventilated” story for you, if you prefer. Don’t delay this opportunity; you never know who may need your story as their “guidebook” for their own mechanical ventilation journey.