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Vishal

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@vishal

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    Vishal replied to the topic Dad was placed on end-of-life care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    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]

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    Vishal started the topic Dad was placed on end-of-life care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    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 wasn’t…[Read more]

    • Profile picture of Christie Patient
      Christie Patient replied 1 year, 2 months ago

      Vishal I am so sorry to hear this. Know that my heart is with you as you go through this time with your dad. I am glad that he is comfortable and that you are allowed to be there with him. It’s such a gift to not be alone at the end–for both of you. Take care, and let us know if you need anything.
      Chrsitie

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    Vishal replied to the topic Sudden deterioration in breathing in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

    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.

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    Vishal replied to the topic Sudden deterioration in breathing in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

    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.

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    Vishal replied to the topic New diagnosis age 61 in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago

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

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    Vishal replied to the topic Sudden deterioration in breathing in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    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.

  • Profile picture of Vishal

    Vishal replied to the topic New diagnosis age 61 in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago

    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]

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    Vishal replied to the topic New diagnosis age 61 in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago

    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]

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    Vishal started the topic What's your oxygen set up? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago

    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 “Y-connector”…[Read more]

  • Profile picture of Kathleen Ryan

    Kathleen Ryan and Profile picture of VishalVishal are now friends 1 year, 3 months ago

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    Vishal replied to the topic What should I expect as IPF progresses? in the forum Caregivers and Spouses 1 year, 3 months ago

    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]

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    Vishal started the topic What should I expect as IPF progresses? in the forum Caregivers and Spouses 1 year, 3 months ago

    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 want…[Read more]

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    Vishal replied to the topic Discontinued Esbriet in the forum Esbriet (Pirfenidone) 1 year, 3 months ago

    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]

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    Vishal replied to the topic Sudden deterioration in breathing in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    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]

  • Profile picture of Vishal

    Vishal started the topic Discontinued Esbriet in the forum Esbriet (Pirfenidone) 1 year, 3 months ago

    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 progress…[Read more]

  • Profile picture of Vishal

    Vishal replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 1 year, 3 months ago

      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]

  • Profile picture of Vishal

    Vishal started the topic Sudden deterioration in breathing in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    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 getting…[Read more]

  • Profile picture of Vishal

    Vishal replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 1 year, 4 months ago

    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]

  • Profile picture of Vishal

    Vishal replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 1 year, 4 months ago

    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]

  • Profile picture of Vishal

    Vishal replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 1 year, 4 months ago

    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]

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