Forum Replies Created

  • vishal

    Member
    March 22, 2021 at 12:52 am in reply to: Dad was placed on end-of-life care

    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 his insulin and she noticed that his breathing had slowed down greatly and had lots of mottling all over his limbs. She told my sister to call all of us to the hospital immediately as my dad was likely passing away. He passed away by the time we got there. He went very peacefully – no signs of discomfort or pain at all, which I take great solace in.

    I share this experience because it helps me to write things out and so that it can help others here. One of the things that we were so apprehensive about was what the final days were going to be like. Would he die from a heart attack? Would he be in a lot of pain and discomfort? Would he die trying to gasp for air? The few stories I read online and my conversations with all the staff at the palliative care unit lead me to believe that the vast majority of PF patients pass away peacefully in their sleep (at least those that are receiving palliative care). So, I hope that this will help some people be less apprehensive about what may happen in the final days/weeks.

    And thank you all for the kind words – this is really a great forum for support and information for patients and caregivers. I may not visit here too often anymore but please feel free to DM me if you have any questions.

     

  • vishal

    Member
    February 5, 2021 at 8:19 pm in reply to: Has anyone stopped taking Esbriet?
      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. Although he still feels like he has to run to the toilet sometimes. It’s great to see this improvement in his GI issues.

    However, his breathing has deteriotated over this time as well – but, this could also be due to the fact that the weather has gotten much colder over the last week or so (we’re in Toronto). So, I’m not sure if it’s because we reduced his Esbriet dose.

  • vishal

    Member
    January 19, 2021 at 4:15 am in reply to: Has anyone stopped taking Esbriet?

    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 more widely before antifibrotics were approved and some docs continue to use it along with an antifibrotic whereas others have stopped using it completely. Not sure what the data says about using them in combination, but you could be right that using both together exacerbated the side effects.

    Goodluck with trying it again – I hope it works better for you this time.

  • vishal

    Member
    December 1, 2020 at 6:40 am in reply to: Oxygen

    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.

     

  • vishal

    Member
    December 1, 2020 at 6:38 am in reply to: No, I don’t have COVID-19. It’s my PF cough.

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

  • vishal

    Member
    March 14, 2021 at 4:14 pm in reply to: Sudden deterioration in breathing

    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.

  • vishal

    Member
    March 14, 2021 at 4:11 pm in reply to: Sudden deterioration in breathing

    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.

  • vishal

    Member
    February 21, 2021 at 3:13 pm in reply to: New diagnosis age 61
  • vishal

    Member
    February 21, 2021 at 3:10 pm in reply to: Sudden deterioration in breathing

    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.

  • vishal

    Member
    February 21, 2021 at 3:02 pm in reply to: New diagnosis age 61

    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 the medication was no longer helping and discontinued it. The side effects are all GI related – loss of appetite (and loss of weight), diarrhea, upset stomach, nausea, etc. They can be pretty bad and are the main reason for why most ppl choose to discontinue treatment with these medications.

  • vishal

    Member
    February 21, 2021 at 2:58 pm in reply to: New diagnosis age 61

    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 thing will be to find ways to stay in the present and cope with it one day at a time.

    Wishing you the best,

    Vishal

  • vishal

    Member
    February 20, 2021 at 12:35 pm in reply to: What should I expect as IPF progresses?

    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 my siblings are with him. And I’m certainly lucky to have my siblings and mom help with taking care of and being with my dad during this time. I don’t know if I could do it by myself.

    It’s a tough situation and it’s so helpful to know what to possibly expect. I’ve been contemplating getting opioids for my dad as well and I think I will finally get some for him this week. Our respirologist had already suggested we start on it but we were hesitant since it’s such a strong drug. But at this point, all I care is that he’s comfortable. I’m praying every day that he passes away peacefully in his sleep at home.

    Wishing you the best,
    Vishal

  • vishal

    Member
    February 20, 2021 at 1:37 am in reply to: Discontinued Esbriet

    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 progresses, they are less and less effective. Our respirologist left it up to us decide when to discontinue Esbriet because he was unsure of its efficacy after my dad’s previous deterioration where he began needing 5L of oxygen.

  • vishal

    Member
    February 19, 2021 at 2:29 am in reply to: Sudden deterioration in breathing

    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 L/min at rest) he’s started to feel much better though.

  • vishal

    Member
    January 20, 2021 at 3:13 am in reply to: Has anyone stopped taking Esbriet?

    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 day-to-day life without O2. From what I’m seeing and reading about other people’s experiences, the people who have been really active before the diagnosis have a slower progression. Exercise seems to be so important. I’m trying to get my dad to do really light exercise throughout the day also, in hopes that it will help.

  • vishal

    Member
    January 20, 2021 at 3:06 am in reply to: Has anyone stopped taking Esbriet?

    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 provided significant relief or not.

    If it doesn’t provide him relief, then we are going to stop taking it.

  • vishal

    Member
    January 17, 2021 at 7:23 pm in reply to: Has anyone stopped taking Esbriet?

    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 it completely because I think it probably is doing some good.

    I’m also going to start giving my dad some strong prebiotic + probiotic formulation every morning. I’ve heard some good things about probiotic formulations – they’re often used by patients with inflammatory bowel syndrome and related conditions. And we’ll try the Oregano tip too – I’ve never heard that before!

    If we can just get the GI issues under control, I think he’d start feeling much better.

    I wish you all the best and hope your next lung check up goes as well as can be. Stay positive!

     

     

  • vishal

    Member
    December 1, 2020 at 4:58 pm in reply to: Dad was diagnosed with IPF

    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.

  • vishal

    Member
    December 1, 2020 at 4:55 pm in reply to: Dad was diagnosed with IPF

    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.

  • vishal

    Member
    December 1, 2020 at 4:49 pm in reply to: Dad was diagnosed with IPF

    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.