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    • #15519
      Megan Zetter

      I am the caregiver for my father (72y/o). He was dx’d about 3 years ago and over the past 1.5yrs has declined significantly. Aug 26. ’18 he suffered a PE. He is home now on hospice. Between Sept. 1st up until today he has improved (compared to what he was like while in the hospital). Three weeks ago he was removed from hospice. However, after me fighting for him, he was put back on yesterday (12/3). At any rate, my question is this: He has been on 10L of O2 since returning home and at times that is not enough. I know no one here is God, but considering no in-home concentrator, as far as I know, goes above 10L, how can hospice say he is improving? He can’t even walk across the room without becoming severely hypoxic. He is in a power chair. How long can a person live on 10L of O2? His sat averages in the low-mid 80’s, but has been as low as 57!! On rare occasions he will jump into the 90’s.

      I suppose I didn’t really ask a question here. 🙂  In summary, my concern is that 10L is O2 is a lot and for hospice to say he is improving baffles me. I know a lot of what hospice does is dictated by Medicare but the fact that he did improve since being released from the hospital is great, it in no way means he is improving. His PE likely dissolved.

      For reference he has done all the normal tx: OFEV (chronic diarrhea) and Esbriet. He no longer takes either. Respiratory therapy and prednisone – stopped both months ago. He currently takes Eliquis, Lasix, Tamsolusin,  and Trazadone daily as well as morphine, oxycodone and lorazepam PRN. Oh, and he blew $20k going to AZ for some bs stem cell therapy. I tried to talk him out of it …

      I really appreciate this forum. I have been checking in a few times a week over the past six months or so; the information has been helpful. I thought I’d finally post.


    • #15551

      Hi Megan,

      Thanks so much for your message, and my deepest apologies for the delay in getting back to you. I am usually much more prompt in replies, although I’ve fallen a bit behind this week with lots going on. I’m glad you shared a bit with us about your Dad, although I am really sorry you’re both having to navigate the IPF world. Sounds like you’re an amazing advocate for him!

      Were you fighting for him to be placed back on hospice (12/3) for pain management, or closer attention to his oxygen and medical needs by the appropriate medical providers? It feels like (although, this is just my experience) people on hospice are monitored more closely by physicians based on their need, so I can certainly understand where your question of how hospice can say he is improving while still requiring 10L of oxygen. That is a lot, although I do know other members of this forum who are on 10L as well. I’d be concerned that they are prematurely stating that he has gotten better though, I’d likely feel as you do. What does his pulmonologist say about “improving enough” to come off hospice? I’d certainly voice those concerns to the physician and/or a social worker in the hospital.

      Sorry I don’t have any more concrete or helpful things to share with you. This is such a hard road, and I know it is important to feel heard/validated, especially when you’re in disagreement/questioning the medical professionals decisions.

      Does anyone else on this site have experience with hospice as a caregiver to someone with IPF/PF? 

      Let us know how you make out or how things are going for you and your Dad.
      Take care,

    • #15556
      Megan Zetter

      Hi Charlene,

      Thanks for the response. And no problem about the delay — I know you have a life!! 😉

      As far as the “improving” was concerned he did improve after being released from the hospital, but as I said, it was likely due to the PE dissolving. Though I am not certain as there has not been any chest scans since.

      I wanted him back on hospice for closer monitoring and easier access to the meds and O2 needs. I cannot be at his home 24/7 and his wife’s health his quite poor so between the two of them it’s far too much for them to manage. Despite the fact that he has good days cognitively (the past two were excellent), he absolutely cannot go without O2 for more than a minute or so and that is while remaining completely still. It’s a whole other story if he were to need to stand — he wouldn’t be able to. And then he will have days where he thinks he needs to go to work, lives in a different state, that I have grandchildren (I have no children), that it’s morning when it is night, sats are in the upper 70’s, etc. So while I am not sure that that constitutes hospice needs/nearing, I don’ know what else to do for him. It’s such an awful disease and so hard to watch or know what the right care is.

      To answer your question about the pulmonologist, he is not seeing one anymore. The decision to go off hospice was made by his PCP and hospice nurse, their reasoning, I am not sure on. My dad agreed with them the day he was told a new pulmonologist would be joining the hospital (he lives in a very small town) and that the new doctor might have more to offer him (which he doesn’t. The PCP listed off what this new doctor does and my dad has already done it all). It only took my dad hearing, “more to offer” for him to say yes to being released. I understand my dad wanting all options at his disposal, but the simple truth is that there is nothing more anyone can do for him at this point.

      He was put back on hospice on Wednesday. We are with a new hospice facility as well, one that is located out of a bigger city and has more they can offer him. I am already much happier with them.

      Thanks again for running this site, Charlene.

      • #15578

        Hi Megan,

        Thanks so much for your reply, and I hope this note finds you having had a nice weekend. Did you get upto anything fun or exciting? Is your house all gearing up for the holidays?

        I appreciate you sharing a bit more clarity on your Dad’s situation. I agree, likely he improved due to the PF dissolving, although I find it odd that they haven’t done any follow up scans. Does he have any appointments coming up, where they might conduct one there?

        I think it makes complete sense why you want him back on hospice care, especially given the family situation and managing this very intense, cruel illness. I hope they take that into consideration, as it isn’t realistic for someone outside of the home to be there 24/7, and with an aging spouse with her own health issues, I’d argue that its too much for sure, especially as you say the dependency on supplemental oxygen. I use 02 and managing it all is far too much for me sometimes!

        It sounds like he was put back on hospice this week, and with a facility who has been increasingly helpful? If that is the case, I am glad to hear it. Its so important not only that your Dad is happy with his care there but that those caring for him are happy as well. I hope things continue to progress slowly for your Dad, and that there isn’t any suffering. This absolutely is a cruel disease, I can’t imagine the added upset that the cognitive issues would have for you all. Hang in there, and feel free to write anytime. I’m glad you’re part of the forums!

        Warm regards,

    • #15846

      I’m glad you switched hospice services Megan.  I’ve been through end of life with both parents in hospice and want to let everyone know that they are not all created equally.  If you are unsatisfied with one service, look for another.

      • #15848
        Megan Zetter

        Thanks NanaJane. The new hospice service is night and day different.

        • #15863

          I am really glad to hear this Megan, and hope it is different in a good way that you and your family are happy with! I hope you enjoyed this holiday season as much as possible, and thanks again for being part of this online community.


      • #15862

        Good reminder NanaJane, thank you! I think it is also important to give patients and their families choice when it comes to hospice. So many folks think that where their doctors refer is where they “need” their loved one to be, but we absolutely have choices when it comes to this, so thank you for reminding everyone that they are not all created equally. I’m so glad you’re part of our forums!


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