Interview with an Oxygen User

A mother, traveler, advocate, and oxygen user since the age of 21…meet Diane Neal! This incredible, multifaceted woman hasn’t let her oxygen therapy define her. Learn more about how Diane takes her freedom into her own hands and encourages others to do the same!

How did you originally hear about American Medical?
“I went to National Jewish and the respiratory therapist there works directly with American Medical, she recommended it. Once I knew portable concentrators could meet my requirements I was very excited. I talked to Nick on the phone and did my research at home. I shop very differently than the average bear. I googled everything and I saw that this was probably my best option.”

“What was amazing about American Medical was my schedule was kind of crazy because we were trying to get out of town with our motorhome and Nick said ‘Yeah, I’ll meet you on the weekend, no problem.’ I was shocked. This is not how it usually works in the medical world. Normally, if I get to make an appointment I get the pleasure of sitting in their lobby for quite some time, and I get to wait for them to remember I’m there. Then the other people generally don’t know much about it and they have to get several managers. You could tell that with Nick, if you needed to take it at a slower pace he could do that no problem. With me, having done my research it was in and out. We could work by text, email, phone. It was more of ‘lets meet the patient where they are at and lets take care of their needs’ because everyones oxygen needs are different, we are not all equal.

“What was it like making the switch to oxygen?”
“When I went on permanent oxygen, I had small children. When we went out in public, being a young mom on oxygen, people stared. There’s nothing we can do when people stare but to a young child it’s ‘what’s wrong with my mom?’ And so that was how I started decorating my machines. I would put clothes on them, anything to make them look different. After that, when they started staring they would say 'oh your mom has the coolest tank' and it went from ‘what’s wrong with my mom’ to ‘yes, that’s my mom.’”

“When I first got my electric scooter, there was was this ho-hum in the house kind of like ‘oh mom is going down hill.’ I said ‘you know what…let’s go to the store.’ My son was in cross country at the time and I said ‘lets race, bring it. see if you can out race me’ and we did!

Advice for oxygen users?
“It’s better to start thinking about things differently when you’re on oxygen. My doctor would say ‘I know you want to be active, have you thought about an electric scooter?’ I was apprehensive but he said ‘You only have so much energy. Don’t waste your energy parking far away, ask for help, ask for someone to reach up high or down low, each of those things take up energy. Conserving your energy by asking for help just allows you more energy for the activities you really want to do.’ Yes, we might get tired and yes the oxygen can help but there are little things you can do to help yourself each day.”

Tips for traveling as much as you do?
“I have traveled by boat, plane, train, motorhome, and car. The biggest thing you need to do is you need to be organized. Organization can be hard. Ask a friend, call in advance; you have to plan ahead. Because we’re on batteries, always carry your electric cord so you can plug into a wall. You can always kick someone off of their cellphone charger because this is oxygen. The first thing I do when I get home is I put my batteries on the chargers. I baby these things. I don’t leave them in the hot car, I could go on and on. Check with your doctor and carry a prescription for not just your oxygen but your mode, liquid or concentrator, and make sure it says by nasal cannula. Research before you get to where you’re going. I like to have a spiral notebook with me because I don’t want to forget something.”

“It’s important to remember traveling with a concentrator requires electricity. As we watch hurricane Harvey and Irma, you see you can be without electricity. Talk to your doctor, they can help you fill out a form that says if an outing happens, the electric company is supposed to prioritize and turn yours back on first. If you’re staying at a hotel, ask questions like ‘do you have a back-up generator?’ You want to know what do to and avoid situations where you feel panicked.

So you’re a big advocate for asking for help?
“Absolutely. It’s the hardest thing to let go of the vanity; you have to ask for help. If you don’t you’ll set yourself up for frustration, spiral down, and you’ll stop wanting to go out. You want each outing to be successful and if it’s not, figure out what went wrong.”

What motivates you?
“My husband and my kids. Being able to give back. I wasn’t supposed to be here. I was given my 6 months to live at 21, 22 years old. I’ve beaten the odds and I love that I can give back.”

Anything else you want to tell oxygen users?
“Take no with a grain of salt. For example, scuba diving is a perfectly acceptable no; skydiving as well. However, there are a lot of other things that no isn’t okay, it’s just different. When your doctor says no you have the right to say 'why' and 'how can I try it differently?' Maybe I can’t go bungee jumping but there are still a lot of things I want to do. My husband and I have figured out different ways to ballroom dance with oxygen. The other thing I would say is if your doctor says anything about your eating, sleep, exercise, and mental attitude, those are the 4 places I must say ‘do not let that go.’ If you have depression, sadness, concerns, stress about where you are with your disease, it’s not going to help you get better, you need to seek help. Ask for help, you will be able to enjoy life better. If your doctor says to move, then move. You may be tethered to your machine but you are not tethered in life!"

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