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Dad was diagnosed with IPF
Hey all,
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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6 Replies
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Hello Vishal, sorry for the late response. The experiences you are describing for your father are quite common for pf/ipf patients. Almost all of us have experienced some of your father’s symptoms. I have previously wrote a forum topic on gabapentin. Some of our members have taken gabapentin. Many have had success with eliminating their coughing spells. Many of patients experience weight loss. Many are trying to lose weight to qualify for a lung transplant and many lose weight because of the disease. It’s easier to breath when your stomach is not so full. Maybe your father should talk to a mental health professional. He might not necessarily need medication but another outlet to express himself. I’m sorry you have to be a part of this group. I commend you for being a caring and loving son. Take care, Mark
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Thanks for the response, Mark! I’ve definitely read the forum topics and discussions around gabapentin—it was very helpful. I’m speaking with my dad’s doctor about it. He suggested that we first try increasing the flow rate of the O2 concentrator, wearing the nasal cannula even while trying to sleep, and to use a ventolin nebulizer as needed. And surprisingly, the coughing fits have stopped the last 2 days. I hope it continues, but it’s good to know that we still have another option (gabapentin) in our back pocket. And I will continue to try to get him to move around a little more and feel less depressed.
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Hello, Vishal – My dad had IPF 30 years ago and now I have another form called hypersensitivity pneumonitis. My symptoms got a lot worse during the first months of the pandemic and when I told my consultant that I was depressed and worrying about my own death she referred me for palliative care. It has been life changing. I go for physiotherapy, have a new walker that holds my oxygen and has a seat so I can sit down when necessary, and I’m receiving counselling as well. The purpose of palliative care is to improve the quality of life for people with terminal illness and they have improved mine and lifted my spirits immeasurably. I would look into it for your dad if it is available where you are. I went for a walk with my walker wearing a mask over my oxygen cannula and it was so nice to go outside! Good luck!
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Hi Wendy, thanks for the response. So happy to hear that palliative care really helped you. It’s definitely something we’re looking into and I’m trying to get my dad on board. It’s too bad winter has started here in Canada, but I’ll still try to get him started on it. I think physiotherapy and counselling will be amazing for him.
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Hi Vishal and welcome,
There certainly is a wealth of information on these forms and I hope you find success for your father. Mark and Wendy have terrific advice and I am glad I saw your post.
I would suggest on the supplement side you read about EGCG many are using to help with the cough and Serrapeptase for the phlegm. But don’t have your father take the serra until you understand it cannot be taken anywhere close to food or other pills because it dissolves protein and it sees those two as protein. It has reduced my phlegm a lot for the past two years.
Success in your journey helping your father…
Steve
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Thanks for the suggestions, Steve! I’ll have to do some more research on both of those, as I haven’t heard too much about them. I’ll keep you guys posted on what happens. For the last 2 days, increasing his O2 concentrator flow rate, keeping the cannula in even while sleeping, and a bronchodilator have helped. I imagine as his condition worsens, this won’t be enough and we’ll have to move onto other measures.
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