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I have a few medical devices that I use daily and rely on for managing my Pompe disease. But my ventilator is definitely the most important because I actually have to wear it all day. I literally can’t breathe without it, so I was a little surprised when my insurance denied me getting a new one.

The “reason” was that it wasn’t a necessity, which made me chuckle because that was the most ridiculous thing I’d heard in a while. My ventilator is my lifeline. 

For those who don’t know much about ventilators, they need constant preventive maintenance. Like any device, they can have technical problems and eventually crash and die. What happens if you would run your laptop computer all day, every day? Eventually, it will freeze and stop working. It will need a reboot and rest. Same with ventilators. They have to be checked monthly to catch any issues that may be coming. 

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I have 2 ventilators because I have to use one of them every day and all day. When one of them needs maintenance I have to turn that one in and get a new one from the company, which my insurance will pay for it. 

Unfortunately, my insurance decided for the first time that it’s just not that important that I need one anymore. And when something like this happens you can’t just call them and explain to them why you need it. Instead, you have to get your doctors, case workers, and others involved.

I’m definitely not the first person, nor will I be the last person that will go through this. As much as I talk about having a healthy mental state, this is one of those issues that plays a huge part in stress and depression. I’ve already accepted the fact that I will likely be using a ventilator for the rest of my life. And the thought of having a machine literally helping me stay alive is scary enough, so I try not to think about something happening to it while I’m out and far away from home. I don’t need the extra worry of my insurance not approving me for a new one, which, by the way, I need a new one at least yearly. 

I personally feel that the system is unfair. We have our rights and we have laws that are designed to protect us but nobody ever mentions the fight for what we deserve. 

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Right now I’m in the appeal process, and my respiratory therapist is doing the most work by making phone calls and having her team make sure I get my new ventilator, while there’s also a recall on the kind of vent I use and a shortage of them.

I get to do the fun part of waiting and hoping my insurance approves it. I have learned that I can’t allow these kinds of worries to take over me because I know how much I can let stress make me feel sick. 

This is the first time I have experienced this kind of issue with my ventilator, and it scares me a little bit but I know it’s an issue that can be resolved. I’ve heard stories of this happening to others, and they were able to get the issues resolved. 

I think it’s important that patients do not easily accept disapproval and always keep trying because they will hear “no” many times along the way. Do not be afraid to speak up and take legal action if it has to go that far.

My ventilator is something that I will need forever, and I will always do whatever it takes to make sure I have it and that it is receiving proper care.