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    • #27392
      Vishal
      Participant

      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 him to suffer from all the side effects anymore. He has gained back some appetite but due to the deterioration, it’s still difficult for him to eat.

      I don’t think he will survive the year – much of his deterioration occured over the last few weeks where he went from 5L of oxygen to 10L; and it seems to be getting worse. Today he was only comfortable once we put him at 12L. How high a flow of oxygen can someone be on?? At some point, there is just so much dead lung tissue that no amount of oxygen will help – when does that point occur – 15L? 20L? Our respiratory therapist said she’s not even seen any patients on more than 12L.

      He’s become much more weaker and fatigued as well. So, I’m really thinking that he will pass away soon. But I just need to know what to expect. Will he pass in his sleep? Will he have an exacerbation where we need to admit him to the hospital? How would he even be taken to the hospital if he’s on 12L of oxgyen – do ambulances have high flow oxygen like that??

      I’d appreciate any insights from someone who’s been through the advanced stages/going through it.

      Thank you,
      Vishal

    • #27394
      Mark Koziol
      Participant

      Hello Vishal, I’m sorry any of our members have to watch a loved one deteriorate. My brother recently passed. I was able to see him before he did pass. When I saw him, he was on 15 liters of 02. For most of the day he was comfortable but he told me at night is when he began to get fatigued. He would nap on and off throughout the day. At this time he his oxygen saturation hovered around 82%. Although, the sats were below 88% he was not in distress. It seemed his body acclimated to his needs. My brother died approximately 7 weeks later. His passing was peaceful during his sleep. He was on hospice for the last 3 weeks of his life and only medication was a drop of morphine under his tongue for him to feel comfortable. I wasn’t with after I left him but we did video with each other quite often and texted or talked every day. I could tell after too much talking he would get a little tired. This is a sad event to watch and be part of. I thank you for being there for your father. Not every patient is this fortunate. Take care, Mark

      • #27397
        Vishal
        Participant

        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

    • #27470
      JT
      Participant

      Mark, I am so sorry to hear of your brother’s passing.  It was very moving to read about his last days and your thoughts. It’s a subject that I have wondered about when I think about my own end of life planning and how it will affect loved ones. It’s not an easy topic but we in this group have a bit more urgency to be able to anticipate what may occur and how to prepare as we are able and still maintain a positive outlook. Thank you and thank you Vishal for your questions about your dad and how you care for him.

      JT

    • #27488
      Chris Soper
      Participant

      Hugs @vishal. I lost my husband recently – he was on 4 litres O2 on ‘as necessary’ basis but was hospitalised after a fall when he broke his hip and multiple ribs. Very quickly his oxygen requirements increased and when he was discharged four weeks later (still with broken hip and ribs) his prescription was for 12 litres O2 24/7.  Thanks to NHS we had two 9 litre machines so effectively could go up to 18 litres, which we did in his final days, but we were told that anything more than 15 litres made no difference. If 15L was insufficient the ‘best’ help was to try relaxation techniques (not easy when you’re in pain and struggling to breathe).  My husband was put on opiates but he suffered hallucinations, which stressed him even more so he was switched to low doses of morphine, which we were told should help as a relaxant.  His pain obviously exacerbated his oxygen requirements but he only survived 7 weeks after his fall. I do hope that information helps in some way. Good luck to you and your family.

    • #27497
      Jerry
      Participant

      Dear @vishal

      I have IPF.   In 2011 My father passed away from cancer.  Two months before that I was working a 30 plus year career in the Oil and Gas  Industry. I could see my father was going down hill, not much time left.  I left that job to be by his side just before  he was placed in Hospice. I am so thankful I had that time with him. He hated the drugs  (Morphine) because it made him sleep. There were times when the pain was so great he would ask for it but mostly he just wanted to sit and talk.

      None of us can say what the events of your fathers last weeks/ days will be like. He could end up in the hospital or die in peace in his own bed, but He will die. So what matters is the time you spend with him.  Letting him talk and letting him know you love him.  I pray you both find peace through our Lord and Savior Jesus Christ.

      IPF is a terrible thing. As I said I have it and I know my time is short. I can only tell you to spend as much time with your father as possible while you can.  You will be the better for it.

       

    • #27515
      steven mason
      Participant

      This is how my father died. He had 2 physicians–one with the mayo and one in orlando. The mayo doctor was candid and kind–he said the fortunate ones with IPF die from a heart attack—lack of oxygen. It is a quick and painless death–per his description.. The unfortunate ones end up in the hospital. My father had a strong heart–cardio system. One lung collapsed and he was placed in a drug induced coma on a ventilator. My aunt–his sister begged me to disconnect support—I refused. The dr who I admired greatly said my dad would decide his fate. He lingered days—one dr wanted to move him to hospice but the treating physician overruled him stating my dad would not survive the transport. I watched the meter in his ICU room—like in a trance—some people can survive quite long with limited oxygen. I hope you do not think I am macabre–but considering there is a strong genetic component—I have read about death with dignity—colorado—oregon etc.

    • #27516
      steven mason
      Participant

      Here is another part of the process that I did not like–and still do not like. My father thought he could predict the future so he executed a “living will”—but when his lung collapsed they asked him (imagine that frantic situation) whether he wanted support—he nodded yes. The hospital staff knew he had a living will and kept asking me for it—but I said I did not know where it was–I lied. In my mind it is an attempt by all of us to legislate our future existence–when none of knows what we would want to do until the crisis happens. So what I have done is sign a health care surrogate form—-someone who is thoughtful–not prone to outbursts when under stress and someone who possesses a logical mind. I do not regret not giving the hospital the living will—since…..you know what would of happened.

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