Some helpful hacks for those living with IPF

Do you know what a hack is? It’s a way of doing something more simply, efficiently, or effectively. Throughout my journey living with idiopathic pulmonary fibrosis (IPF), I’ve found a number of hacks that make my life easier.

When I was diagnosed with IPF in January 2017, I admittedly had a lot to learn, so I turned to other patients and their caregivers. That helped. Following my bilateral lung transplant in July 2021, I turned to the transplant community to learn from their experiences. Let me share some of those tips with you now.

My hacks for living with IPF

Medication management: I’ve shared before that I have a bin where I store all of my medications, and I keep a list of their names and dosages. I assign each medication a number and write that number on the top of the pill bottle. I do double-check the label when I pick up each bottle to verify the lids haven’t been switched. That allows me to quickly locate a specific medication from more than 16 bottles in the bin.

Home oxygen concentrator: These concentrators can be noisy, disturbing sleep. But there’s no rule stating that the device has to stay at the foot of the bed. You may be able to put it in an adjacent room and run the oxygen tubing into your bedroom.

Talk with your oxygen provider about safe locations to place the concentrator and the maximum distance you can run the tubing. I don’t recommend placing it in a closet. I tried that and discovered the machine creates a fair amount of heat, making the closet uncomfortably warm.

Oxygen tubing and cannulas: Oxygen tubing and nasal cannulas are necessary evils for those using supplemental oxygen. Your oxygen supplier should provide you with sufficient tubing and cannulas to allow you to change them on a regular basis. Don’t try to hide the tubing under rugs. While that may be more aesthetically pleasing, the tubing can be compressed or crushed. Because it’s hidden from view, the damage may go unnoticed and the flow of oxygen may be diminished.

In case of emergency: Many of those living with IPF don’t look sick unless they’re wearing a nasal cannula. Post-transplant, I generally look healthy and take more medications than many IPF patients. Because my health issues aren’t obvious, I use my iPhone’s health application as a medical alert device. I’ve entered all of my medications and health conditions into the Medical ID feature, along with a note that I’ve had a lung transplant done via sternotomy.

All of this information can be accessed from the lock screen by selecting “Emergency” and then “Medical ID.” That gives bystanders or first responders access to my medical info in an emergency.

Now it’s your turn. Do you have any IPF hacks for other readers? Please share in the comments below. Making someone’s journey easier is how we can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.