Dad was diagnosed with IPF
I’m new to the forums here – but I’ve read through quite a bit and have found it helpful. Just wanted to share my experience and ask for some suggestions.
My dad (70) was diagnosed 2 years ago and despite being on Esbriet his symptoms have gradually worsened over this period. Over the last 5 months they started progressing much more rapidly. He didn’t have to use oxygen at all until 5 months ago but now he’s at a point where if he has to get up to do anything, he needs his oxygen. Psychologically, he’s become totally dependent on it – he’ll even use it when he’s sitting and doing nothing.
Two major side effects of Esbriet that we noticed:
- He’s lost 20 lbs over the last year and his appetite has decreased a lot. There are days when he doesn’t want to eat at all. We’ve done our best to try to get him to get enough calories vai calorie drinks, make his favourite foods, etc. We’re thankful that he still eats 3 meals a day, albeit sometimes the meals are quite small.
- He’s had a lot of diarrhea – sometimes it comes in bouts were he’ll have it a few times a day for a week or so.
And recently, his coughing fits have gotten much worse. For the last few months, they weren’t too bad – he’d have one or two coughing fits a day. We’d use Chloraseptic lozenges (with benzocaine 15 mg) and antitussives (e.g., Robitussin) along with lifestyle changes (avoiding triggers, humidying air, sleeping on an incline, etc), which seemed to help. But over the last few weeks, it’s gotten to a point where he has coughing fits all night long and can’t sleep (perhaps coincides with the change in temperature). His chest hurts a lot too. So, now I’m thinking about getting him on Gabapentin. Has anyone here tried Gabapentin? If so, I’d love to hear your experience.
Overall, the worst thing is that he’s become quite depressed – he hasn’t gone out of the house in the last 5 months. The one time he left the house was when I forced him to come out for a ride in the car with me – we brought his portable oxygen concentrator as well. He used it for maybe a few minutes and he was totally fine the whole time. Psychologically, he’s completely dependent on the oxygen and doesn’t want to even try to do anything without it. He’s terrified to go outside not only because he thinks he can’t do it, but he’s afraid to get COVID. He walks with the oxygen in the house just fine so I’m sure he can go for short walks outside, which would be so good for him. But now it’s getting cold outside and he has another excuse to not do it.
Anyone else dealing with this sort of thing? It feels like he’s given up and he’s just waiting to die. I’m not sure what to do other then get the doctor to prescribe antidepressants. Are any of you on antidepressants and if so, what is your experience on them?
Thank you in advance for sharing your thoughts and experiences!
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