I am so excited for you to meet Stacey who is 63 and retired. I met her through my Instagram and she was such an encourager to me. She was getting her Inogen soon after I got mine. Her story is one of perseverance and learning to accept life on oxygen. She is an incredible lady and I’m so glad I could share her story with you.
Q: What is your name and your age?
A: Stacey Dillard, age 63, retired Aug 2016
Q: How long have you been on oxygen?
A: I have been on 02 since Nov 2015. I use concentrator continuous flow at night on 2L, and POC pulse (Inogen One G3) for exertion (usually set at 4 for errands, & 5 for walks).
Q: What is your story? How were you diagnosed and what was the diagnosis?
A: In April 2013, I had an uncontrollable coughing attack at work where I felt I couldn’t catch my breath. I made an appt. with my primary doctor who ordered a chest xray which showed my lungs were ‘cloudy’. They referred me to a pulmonary doctor who did more tests, scans, & prescribed me Omeprazole. The doctor thought I could have LAM (Lymphangioleiomyomatosis). I followed up with PFT/Walk tests every 3 months, then finally did a lung biopsy in Nov 2014 (Thanksgiving wk – no turkey dinner for me that yr). My confirmed diagnosis was IPF (Idiopathic Pulmonary fibrosis). A month before two drugs for IPF, OFEV – nintedanib & Esbriet – pirfenidone, which slows progession, had been approved by the FDA. I started OFEV in Dec 2014. I’m being switched to Esbriet this month in hopes of improving my PFT scores and to get some weight back on. I’ve had a 20 lb loss (from my normal 103 lbs) since last June.
Q: How has your life changed since being on oxygen?
A: I was prescribed 02 because my levels dropped during a walk test. Acceptance that I needed it was a big change. I’ve always been active, worked out and was a jogger completing in a ton of 10K’s and a few half marathons. The change has been difficult because I miss doing those things. It cleared my head, kept me in shape and made me feel good about myself. Walking now at 5L, I have to stop several times during my snail pace on a mile walk. I just don’t get it sometimes and my mind is still in a jogging mode. The 02 though does give me a boost of energy and makes me feel more alert. So I proudly wear it and don’t care anymore what other people think when they look at me. It’s something I had to get over.
Q: What is a fear or insecurity that you have about being on oxygen?
A: I fear not getting the air flow I need for some activities. My POC is OK, but the doctor wanted to switch me to a continuous flow (E tank) and I refused! No, don’t take my Inogen away from me. So hiking & even bike riding is out of the question, as is going to higher elevations like the mountains. I miss snow skiing. Pulse is not powerful enough for me, and I need at lease 6L continuous for those activities.
Q: What is something you have learned about yourself while being on oxygen?
A: I’ve learned that 02 allows me to continue to do activities, just at my reduced pace. Acceptance on my part that I need it, has been a huge hurdle to overcome. At least I’m not home bound and can get out and enjoy life, friends, and family for socialization. It makes me feel good about myself again. I attended Pulmunary Rehab classes and learned how to breath better, exercises good for me, and was with others who have a similar or same diagnosis.
Q: Is there something on your bucket list that you hope to accomplish one day, oxygen or not?
A: Since I’ve retired (hubby is retired too), we want to travel and see the world. We went on our 1st cruise last November and it was wonderful. Living in So Cal (San Diego area) is nice, but there’s a whole big world out there that needs to be seen. And going on this cruise proved that flying was ok, and being away from home for over a week was OK too. I had my POC, and Special Needs at Sea provided a concentrator. So relaxing.
Q: What or who helped you adjust and get through those first days of being on oxygen?
A: I’d have to say my spouse, Claude, has been my greatest help. He is always on me to make sure I have enough POC batteries for errands, and being patient since I’ve slowed at doing things. He’s 11 yrs older and in excellent health. My adult kids, son Brandon, 27 & daughter Skyelar, 23, live close by so they call, stop by, and text. I feel fortunate to have a good home support.
Q: How do you remain positive?
A: I’m determined to continue the lifestyle, with limitations now, doing things I enjoy. Everyday, I make it a point to exercise, walk, get outside, and those things keep me focused and feeling positive. My daughter & her husband are expecting their 1st child in July, so it’s an incentive for me to be in my best health for upcoming grandma duties.
Q: What is something that you still strive to do even though you are on oxygen?
A: I think visiting long distance friends is what I’d love to do. I used to visit them in the summer for a week when I was not working (at a middle school in the front office). We’d have our ‘girl’ time talking till the wee hours, shopping, and thankful our friendship has continued since grade school. My routine has changed and I just don’t want to inconvenience anyone, so no more visits. And I’m afraid too that they’d be bored with me not being able to keep up with a full agenda of sightseeing/visiting and with my eating habits too. So now we email and chat on the phone once in a while. It’s all good.
Stacey’s whole life changed fairly quickly. She was used to being very active and not having anything hold her back. Now she is having to accept being on oxygen. The incredible thing is she is not letting it hold her back. She is determined to enjoy life by doing the things she loved doing before oxygen. She is a strong lady and an encourager to anyone who is put on oxygen suddenly. She is a fighter, who never gave up. Stacey was determined to overcome this obstacle in her life. I encourage you to follow her on her Instagram @staceyd53 to see more of her journey.