Forum Replies Created

  • Annette Merrill

    September 5, 2019 at 6:24 pm in reply to: How do you feel?

    Hi Cynthia.

    Yes, I went through all the instructional information provided by Cedars Sinai when I was diagnosed.  My decision not to pursue a transplant was due to many factors, but primarily because of the intense recovery time and procedures required after the surgery – none of it covered by insurance – and the lifetime of anti-rejection meds and doctor appointments.  Doesn’t sound like much of a life to me.

    I was put on 2 liters of oxygen when I was diagnosed in 2016 (24/7) and use a portable oxygen machine when I am able to get out.  I turn up my home oxygen to 3L when I’m awake and moving about, then back down to 2 for sleep.  My air tubing has become a part of me.

    I’m currently able to take care of myself (mostly) but do not socialize much at all.  It’s just too exhausting.  I am also in the process of getting IHSS (in home services) through DPSS in order to get assistance for grocery shopping, picking up prescriptions, and such things.

    My next appointment with my pulmonologist is in December, when he will conduct another blow test and see how the Ofev is doing.  It really boils down to one-day-at-a-time!  But I guess that’s all we ever really have.  🙂

    Take care of yourself!


  • Annette Merrill

    September 5, 2019 at 2:52 pm in reply to: How do you feel?

    Hello to Army Pete, Cynthia and all other fellow “elderly” IPF sufferers.  I’m a complete amateur  on blogging.  I never face book or communicate with others online.  But I was just recently introduced to the PF News forum, and thought I’d jump in and give it a try.  Please excuse my stumbling along.

    I am 67 and was diagnosed with IPF in October of 2016, however I have no doubt that I had suffered from it for a few years by that time.  I had always just attributed my shortness of breath, tiredness and general aches and pains to being old!  My pulmonary doctor has terrible bedside skills and he flat out told me I probably had about 3 months to live.  So the first two years of living with IPF for me was complete terror.  Doctor was very forthcoming with technical details of the many tests I went through (most of which went WAY over my head in terms of understanding),  but failed completely when it came to giving me any kind of assistance in terms of support.  What should I expect?  How do I live with this?  Is there any way to judge my symptoms and estimate how much longer I may have on Earth?  My poor daughter and I had to bump our way along through anything we could learn online or otherwise trying to figure out what exactly had hit me.

    I was on Esbriet for about 2 1/2 years, then this past March  my pulmonologist said he felt it was time to switch over to Ofev.  He said it was based on my last blow test, and went on to explain in his usual technical jargon how/why that was.  Again I was frightened, because there are only the two medicines currently available for IPF and, if I go on Ofev and do not get good “numbers”, what then??  Am I looking at the end?

    I am rambling on here, and I apologize for that, but I wanted to share that, at least in my case, switching from Esbriet to Ofev has been a very bumpy ride.  As instructed, I stopped the Esbriet, waited one week, then began the Ofev.  During that week I was shocked at the many differences I felt.  I suffered DEEP depression  during the time I was on Esbriet, and that vanished within the first day of not taking it.  I was over the moon happy for the relief from the depression.  Maybe this Ofev would be great!  Maybe I could live out my remaining days (however many there may be) in some semblance of joy of life!  I had high hopes, but that was all squashed quite quickly since then.  Started Ofev March 13th, and now pulmonary doctor has me on palliative care.  Palliative care??  All I knew about that was that it means you are on the slippery slope to end-of-life.

    I’ve learned a lot about palliative care and hospice care in the last few weeks and am slowly getting a fingernail grip on what my new normal will be.  The side effects of Ofev (diarrhea and vomiting and general queasy stomach) are so very difficult to deal with.  They can be degrading and exhausting, with frequent messy clean-ups and weakness.  I’ve been concentrating on trying to manage these symptoms, eating more, eating less, earlier, later, etc.  I’ve also discovered that stress and anxiety can bring on surprise symptoms.  But I’m at a loss as to how one handles the fear.  The fear of the unknown.  I’m new with the palliative care team, so am hoping they might be able to guide me with this.  Meanwhile, I’m throwing it out to you.  Anybody have any insight into how to handle the fear of the end of life?  I’d love to hear from you.

    best wishes to all my fellow sufferers,

    Annette Merrill