Meet Alvin, Living with IPF

For me, the coughing was the worst. It didn’t matter what I did—cough syrup, cough drops, anything else—I could hardly catch my breath when a coughing spell hit. I coughed at night. I kept myself awake. Worse than that, I kept my wife awake.

The coughing was so bad that I was hospitalized twice. My pulmonologist suspected that I had idiopathic pulmonary fibrosis (IPF), so he ordered a CAT scan. He couldn’t tell, so he referred me to another pulmonologist at a university hospital nearby. Another CAT scan, and they still weren’t sure. Finally, a lung biopsy confirmed what both my doctors feared.

I knew what IPF was. My father had it. Two of my aunts had it too. I know some people are relieved when they finally find out what they have, but I just felt beaten down. I felt like this was the beginning of the end. I read the literature my pulmonologist gave me and what I found on the Internet. Reading the information didn’t change my mind.

At my first meeting, I saw other people living with this disease. They were living their lives. I began to see that they were helping each other. They were supporting each other. They were enjoying each day and making the most of the little moments.

My wife has gone with me a few times; the group encourages caregivers to attend. Being at the support group helped me realize how differently people can be affected by IPF. I coughed all the time, but my father rarely coughed at all when he had this. Some of the people had oxygen. With others, I couldn’t tell they were sick at all.

My wife and I already couldn’t sleep in the same room because of the coughing, but it hurt her to see me struggling with IPF. I felt like I was letting her down. She is now retired, and we were hoping to do some traveling. We didn’t know if IPF would get in the way of those plans.

My sons are both in the medical field, so they understood even better than I did what was going on with my IPF. I know they’re worried, but they never express their fears with me. I can’t get on the floor and play with my grandchildren anymore. I can’t sing to them as they sit on my lap anymore. However, I can still spend time with my sons and their families, and that’s what’s important to me.

We discussed medications that may work to keep IPF from progressing as quickly. I also started pulmonary rehabilitation. I think it’s great—I’ve always believed that any exercise is good exercise.

I use oxygen on occasion. Sometimes I will go a week or more without needing the oxygen tank or the oxygen concentrator. Other times, I’ve used the oxygen more than once a day. Some of the people at my support group have talked about portable oxygen concentrators, so I’m looking into getting one of those. Maybe, with the concentrator and some planning, I will be able to travel with my wife the way we always planned we would.

From working with my doctor and pulmonary rehab specialist, and talking with people at the support group, I’ve learned what some of my triggers are. Simply avoiding things that cause me to cough has helped me have fewer attacks. Certain things, like strong odors, laughing, and sitting up from a lying position, really cause my coughing to increase.

I’ve had this disease for a few years now, and I’ve learned quite a bit from my pulmonologist and other people in the IPF community. I think I’ve learned enough that I can share some wisdom.

  • If you think something is wrong, do something about it.
  • Work with your doctors. Follow their instructions and the instructions on your medicine.
  • Find what works best for you.
  • Find support from others with IPF. Doctors know a lot, but there are some things that can only be known from living with it every day.

When you have something like IPF, you have to be proactive and find support from within the community. You don’t have to go through this alone; there are other people who have been in your shoes.

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