A few people have asked for advice about living on oxygen, including someone on the West Coast who I had a good conversation with yesterday. Seems like a good idea to share some tips that have helped me and to make it clear again that I have no medical training. These tips may not be suitable for you, so (as always) please talk with your own care team and bring your list of questions to them so they can answer with good advice specific to your situation.
Sending out love to everyone who is on oxygen, or considering it. Being on oxygen can be challenging, and I hope this post may make it a little better, even in some small way. We are never alone.
It is almost exactly six months since I went to emergency and stayed in the hospital for several days due to shortness of breath. I’ve been on oxygen ever since, 24-7. My oxygen rate requirement increased significantly over months, and more recently it has decreased a bit. This decrease is a real relief, since I was up to 10 on a machine that only goes to 10. I have a terrific respiratory therapist with the oxygen equipment rental company, and she brought over a second machine in case I needed to go above 10. These two machines can be linked together and go up to about 15 Lpm of oxygen. Very thankful I have not had to do this so far.
Being on oxygen can be scary and shocking. Some people have said they want to “tough it out” and avoid using oxygen, but it’s there to help us breathe better and if our team recommends it then it’s definitely worth trying. For me and for many others it made such a world of difference. I was having a hard time walking from one room to the next in my small home prior to going on oxygen. Even with it, I still need to move slowly. Walking slowly is challenging for me, and my kids will tell you that, as will anyone who was within hearing distance of us today while walking up and down the street, my youngest reminded me to slow down SO MANY times, out of love and concern. I need to be reminded. I get excited and tend to speed up. Oxygen is extending my life, and right now there is no option for me. I sleep with it, shower with it, and keep it going all the time.
When suffering from shortness of breath, it’s important to relax and take long, deep breaths. In through the nose and out through the mouth. This might feel like it’s very difficult, but it really matters. This is the way to change back to “normal” breathing, and it’s doable. Leaning forward in one’s chair, or on a counter or chair back if standing, can help also, as can sitting up straight and putting one’s elbows out so there is more room for the lungs to expand. Some people find it helpful to put a fan on. It seems counter-intuitive to slow down the breathing, but long deep breaths is important, and relaxing to make this possible is important. Ask your team what is best for you.
I’m using a machine that sucks in air from the room and shoots out oxygen through tubing which goes into my nose through a nasal cannula. This can be drying for the nose and throat, especially at higher flow rates, so Secaris nasal lubricating gel was recommended, applied using a very small amount on a q-tip. The directions say every 4 hours or as needed. I’ve been using it for almost six months and haven’t even used half of my 30g tube, but I don’t put it on as often as I maybe should. Perhaps this is too much information, but my nose bleeds frequently, especially in the dry weather and on higher oxygen levels. It is important to keep the airway clear so the oxygen can get through easily. (Also important to not use oily / greasy moisturizers near the tubing.)
Things can go wrong, and when one is relying on an oxygen machine to stay alive, it’s important to think these possibilities through and have plans in place, just in case. If my machine stops, a loud alarm sounds. This has happened a couple of times, and I’ve also accidentally pulled the cord from the wall (usually by trying to go too far from the machine, especially when the cord gets tangled up). Obviously, it has worked out just fine every time. One machine needed to be replaced, and a representative from the rental company came over and took care of that promptly. Also, we had an electrical problem in our home which required calling an electrician to get it fixed. He was great and had the problem solved within a couple of hours of calling him.
It’s important to regularly check for and straighten out kinks in the tubing that can decrease oxygen flow, including twists in the tubing by one’s neck. I check this several times each day, and always before going to bed. I monitor my oxygen levels (%SpO2) using a little device that fits on the finger, which also shows the heart rate. If you have one, you can ask your respiratory therapist to check for how accurate it is. I’m supposed to keep my oxygen levels between 91-95.
I also have oxygen tanks, with weekly deliveries to replace empty with full tanks (and bring replacement tubing etc.). Obviously, it’s important to stay on top of this. We make sure that there is always an extra tank nearby (ideally in the same room) in case of emergencies so we can switch the tubing from the machine to the tank for seamless oxygen supply. My kids are awesome about this and come running if the machine sounds. I use the tanks when out walking or going on trips to the hospital for example.
Speaking of hospital trips, when at appointments I use the hospital oxygen, whether a big tank on a wheelchair or being plugged into the oxygen in the wall by a hospital bed. It’s important to check the hospital tank gage levels because, even though they are so big, they can empty out too. Twice now I’ve emptied out all the oxygen from a large hospital oxygen tank. Obviously all worked out fine, but it’s important to have emergency plans in place and to ask for help when we need it. Very grateful for the people who’ve come rushing to help. I now always also carry my own tank for a back-up. It’s a bit awkward, but worth it. The rental company included a bag for the knee-high sized tanks so I put it on my lap in the wheelchair.
The thought of being on oxygen can bring lots of feelings, but if our team recommends it then it could really make a terrific difference for us, extending our lives potentially for months or even years. Ideally our team will figure out the cause and find a solution to improve our health, but until then we can benefit so much from the support of oxygen. Please make a list of your questions and talk with your team about them. They will have the answers that are appropriate for your best care. You can ask for a palliative care team for symptom management (studies show that people who have a palliative care team live longer and better – it’s not just for end of life care). You can also ask for a respiratory therapist and/or a physical therapist. Lots of people benefit from oxygen. We are never alone.
By the way, the dog seems to love oxygen tubing and is typically seen lying on it, often with his enormous head on it and/or his paws wrapped around it. As massive as he is, he has not decreased the oxygen flow, nor has he ever pulled out the electrical cord from the wall. Who’s a good dog!
Your pup is so sweet. My Mom was on 10 and they brought her a stronger one, on that machine, she was not maxed out. She had a humidifier with it, had a few nose bleeds. It’s a lot of pressure going through but it really helped her. We lost Mom of Pancreatic cancer on May 5. Hospice was very helpful, I really appreciated them. Im so glad they are taking good care of you and extending your life. Much love, Jill.
Thank you for posting this Jill! 🙂
Thanks for sharing. Awesome information. All the best
I have stage iv, ALK+ lung cancer, too. I just sent you a DM through Instagram. Please read that message and email me back if you’d like.