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Common Struggles of a Patient with Pulmonary Fibrosis Using 02
Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, I was told that the doctors couldn’t predict how fast or slow my disease would progress. Since it was so “rare” that I had IPF before my 30th birthday, my medical teams were pretty transparent about their not being sure what this disease would look like in six months vs. two years for me.
I was told two options: my disease progression may happen slowly, and nothing will be different for me in a couple of years, or everything could change and I could be requiring supplemental oxygen in six months. The latter was the case for me unfortunately.
Adjusting to the use of supplemental oxygen as a young adult has not been easy, and I would imagine others on this forum can relate. The common phrase, “the struggle is real” resonates with me when I think of all the adjustments, accommodations and well… struggles that come with using supplemental oxygen. Sometimes the struggles make me laugh, ie. if I get snagged on something and the cannula is pulled off my face, and sometimes they are incredibly frustrating for me to deal with. I thought I’d take some time to outline the common struggles that I face as a patient with IPF and using supplemental oxygen:
- Driving with O2: Once I am in the car and ready to go it is fine, but getting to that point can be a real challenge. Either I load my cylinder/tank or my POC on the passenger’s side of the car and take the hose off, walk around to the driver’s side to get back in and put the cannula back on, or I have to load the tank into the backseat and feed the line up into the driver’s seat. That latter option though risks the tank moving around when I am driving and as a result of it being in the backseat, I have no option to access it if I need it while I’m driving so this isn’t my preference. If I get in the driver’s side and lift my POC over to the passenger seat then I can leave the cannula on the whole time, but I can’t lift any of my tanks from the driver’s seat across to the passengers seat while leaving it on because they are too heavy and awkward for me. I prefer to drive with others so they can help me navigate my oxygen in the car, but the reality is I have to drive alone often. This is probably the most frustrating and common struggle for me of using supplemental oxygen
- Being the cause of a ‘fall risk’ to others: this happens only in an environment where I use my POC or home concentrator with the extra long tubing that runs all over the floor behind me. I usually feel guilty for using my long hose at work, because then my colleagues need to watch for it that they don’t step on it, preventing the flow of oxygen for me, or trip over it and hurt themselves. As a result, I try not to use the long tubing very often but sometimes it is easier than having to carry my POC or pull my tanks around. I very much miss the freedom of just standing up and walking somewhere, and using my long hose enables me to do this.
What are some of the struggles you’ve experienced and had to adjust to while using supplemental oxygen?
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