Vishal

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 check…[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 help…[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 that…[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 important…[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 or…[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 disease…[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 (8.5…[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 diarrhea.…[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 your…[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 reduction…[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 used…[Read more]