Update:

My dad has passed away – he went peacefully in his sleep on March 16. We all spoke with him the night before and a few hours right before he passed. My sister was with him at the hospital that day. He was awake at noon for a while watching some tv with her and then fell asleep around late afternoon. Later on, the nurse came in to… Read more

Hi all,

Since my last post, on Feb 20th, my dad continued to rapidly progress – each day needing more and more oxygen. From 15 L to 20L; and then more than that. He couldn’t get to the bathroom to shower – so we started giving him sponge baths. We combined three 10L oxygen concentrators together along with a nonrebreather mask and it still… Read more

So glad that you were able to find the cause of the shortness of breath, Burma. We had the respiratory therapist check him out and she didn’t think it was fluid buildup or anything other than the fibrosis worsening. And the extra oxygen made an immediate difference.

Hi Julie, sorry for the late reply. I’m happy to hear you were able to get a 10L machine. My only recommendation to you is to be prepared for more – my dad deteriorated to rapidly once he needed 10L. We had to connect two 10L machines together – and then very soon that wasn’t enough either.

I’ve made posts about my dad and how he’s progressed, please check them out. I hope they can… Read more

Hi Bobbie,

I’m so sorry to hear about your situation. I’m sure the breathing exercises will help. Are you on oxygen supplementation? You should also look into getting a 10L oxygen concentrator or connecting two 5L ones. Ask your pulmonologist or respiratory therapist about what level of oxgyen supplementation can help you.

Studies have shown that two medications: Ofev and Esbriet, slow the progression of the disease in the lungs. And they are more effective at earlier stages of the disease. My dad was Esbriet for 2 years – he got onto it about 6 months after diagnosis. He still progressed steadily and over the last few weeks he deteriorated a lot. So we decided… Read more

Hey Charlene,

I hope you don’t have it. But in the case that you do, immediately get a pulmonologist (they’re called respirologists in Canada) referral and work with him to learn as much as possible about the disease, available medications, diet and exercise. My dad has IPF and he’s at the end stage now – it’s an awful disease but the… Read more

I wanted to make a post about my dad’s oxygen setup as I think it can be helpful for a lot of people on here. When I was looking for information, it was a bit difficult to find.

Oxygen Concentrator Setup:
My dad’s on 12L at rest and we increase it to 14-15L whenever he gets up to do anything. We’ve hooked up two 10L machines with a… Read more

Thanks for sharing your experience, Mark. It’s great that you were still able talk and text with your brother every day (thank God for technology) – I’m sure it meant a lot to him and made a huge difference. I’ve found that just having your loved ones talking and engaging with you is so helpful – my dad certainly feels much better any time me… Read more

Not sure if this is the right forum category to ask this but I thought maybe other caregivers who’ve been through it can shed some light.

My dad’s IPF has progressed a lot over the last few weeks – he’s now on 10-12L of oxygen 24/7. We’ve discontinued Esbriet as it’s obviously not helping. And since I think he’s deteriorating I just don’t… Read more

Thanks Michael – it’s a tough time but the main thing on our minds at this point is to ensure that he doesn’t suffer at all and is as comfortable as possible.

And I agree, although some studies show that there is a significant slowing in the rate of decline in lung function, the drugs don’t seem to work well in everyone and as the… Read more

Hey Mark,

Yes, we’ve been working on breathing techniques for awhile now and it’s kind of helped but not too much. My dad tries but says it’s very hard for him. We have the respiratory therapist coming for another visit soon, so I can ask her if there’s anything else that can help ease his anxiety.

Since getting his oxygen upped to 10L/min… Read more

An update on my dad’s condition:

We’ve decided to discontinue the Esbriet. He had a recent deterioration where his oxgyen had to be upped from 5L/min to 10L/min (8.5 at rest). So, we don’t think the Esbriet is helping anymore. And even if it is, what’s the point in suffering all the GI issues and loss of appetite if the disease will… Read more

UPDATE

We’ve cut down my dad’s Esbriet to just 2 tablets per day (one at lunch; one at dinner). We also started giving him probiotics every morning with breakfast. It’s been about 2 weeks and I’ve noticed that his complaints about GI issues have decreased significantly.

He’s not complaining as much about stomach aches, nausea or… Read more

Hi all,

Over the last week or so, my father’s breathing has gotten much worse. Not sure if it has anything to do with the weather but it went into the -15s here in Toronto, so it’s been quite cold. He was on 3.5L of oxygen for the last 6 months or so and now we’ve had to up it to 5L of oxygen. And yet, he’s completely out of breath just… Read more

Hi Fred, thanks for sharing your experience. It’s unfortunate that both medications had such terrible reactions for you, but I’ve heard that sometimes people give it another shot and it works out better the next time.

Are you considering trying either one again in the future?

It’s so awesome that you can still exercise and go about… Read more

Hi Doug, it’s great to hear that you found Esbriet to be more tolerable. And you’re right, we can’t really know how much it has helped – I wish there was more data available on these medications.

For now, we’ve cut his dose down to 2 tablets a day – I’ll report back in a few weeks to let everyone know how he’s doing and if the dose… Read more

Hi Regina,

Thanks for the reply! It does seem like Esbriet has stronger side effects in some people versus others. There are people who don’t get any side effects at all.

Please post on these forums regarding your experience when you try it again. It’s strange that our doctor never even mentioned prednisone to us. I think prednisone was… Read more

Hi Michael,

Thanks so much for the reply. It’s amazing that reducing the dose by 1 pill decreased the side effects so greatly – I’m happy to hear that it helped you so much. I think that’s the route we’ll go as well – I’m going to speak with our Pulmonary MD this week as well and see if we can reduce the dose. I’m just not comfortable stopping… Read more

Hi all, I have a question that I haven’t been able to find any definitive answer for.

My dad has been on Esbriet for almost 2 years now. While being on Esbriet he has progressed to oxygen therapy 24/7 – he needs about 3.5 liters of oxygen. He struggles to climb a flight of stairs; he can’t even go to the kitchen to make tea or meals for… Read more

Thanks for the suggestions, Steve! I’ll have to do some more research on both of those, as I haven’t heard to 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… Read more

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.

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.… Read more

My dad is also on oxygen 24/7 – putting it a higher flow rate has helped with his coughing. We also started him on Ventolin nebulizer (bronchodilator), which seems to be helping. If this stops working, we’ll get him on Gabapentin maybe.

 

Even I get stares when I cough; I can’t imagine for someone with PF…

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… Read more