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  • Progression involving other organs

    Posted by janet-durgin on August 24, 2018 at 6:42 pm

    In the past 2 months. I have been hospitalized over 30 days. I went in sepsis and was diagonsed with ulcerative colitus/Chron’s Disease. I already have liver fibrosis and LVH. I am so overwhelmed with all these issues. I have a team of specialists trying to figure  which medicines can work together. I was taken off OFEV because it works against the meds for colitus.  Since coming home I feel so weak and forgetful. I am wondering if anyone else has expirenced so many issues and how they dealt with it. My  children are so very in denial.

    Charlene Marshall replied 5 years, 5 months ago 4 Members · 9 Replies
  • 9 Replies
  • Charlene Marshall

    Member
    August 26, 2018 at 8:28 am

    Hi Janet,

    Thanks so much for starting this thread, although I am really sorry to hear of your struggles over the past month or so. That must be so tough for you!

    Did the doctors say what caused the sepsis for you? That must have been really scary, I know how quickly things can become really serious with sepsis. I’ve never experienced colitis or Chron’s Disease but I know friends who have and they are terrible illnesses to deal with, in addition to liver troubles. I don’t blame you for feeling overwhelmed! Is Esbriet an option for you, since the OFEV has been stopped? I do hope one of the two anti-fibrotic medications would work for you, and not interfere with other medications you take.

    I haven’t experienced other illnesses on top of my IPF, other than some cardiac trouble (pulmonary hypertension) and some kidney issues, but that is in response to a number of medications I had to take following an exacerbation last May and my kidneys took a hit. In terms of other chronic illnesses though I’m unfortunately not too helpful. Do you have a case manager or social worker at your hospital/treatment centre who could help you work through the illnesses and how to manage each one? Sometimes people think our social workers are just for emotional support, but we can utilize them for tangible tools too if/when needed. Do you have an outpatient nursing/care support network at all?

    Just wondering if starting there might be an option for you. So sorry to hear about your kids’ being in denial – this is another whole struggle for us to deal with isn’t it?
    Take care and write any time. The group of people on this forum truly “get it” and are very supportive!

    Warm regards,
    Charlene.

  • steve-daggett

    Member
    September 13, 2018 at 10:25 am

    Hi Janet!

    I just saw your post from 3 weeks ago. Hopefully you are doing better??

    I, myself, just got out of a 5-day hospital stay for heart arrhythmia issues, which is a common ‘tandem’ condition with PF/IPF. My heart rate was bouncing all over, from as low as 30BPM up to 150+. I have had this issue for a few years now, and have had a cardiac ablation to try and fix it. Unfortunately, it came back. I used to have Atrial Flutter, and now I have paroxysmal Atrial Fibrillation (paroxysmal means intermittent). So they introduced a new (to me) medication, an antiarrhythmic. The bummer is, one of the side effects worsens my lung condition! So, I can somewhat relate – having to deal with meds that help one condition but hurt another.

    I am on the transplant waitlist at UCLA, and, fortunately, this episode/condition doesn’t jeopardize my listing!

    I hope your situation resolves soon!

    Blessings,

    Steve

    • Charlene Marshall

      Member
      September 19, 2018 at 7:59 pm

      Hi Steve,

      I know your reply was to Janet, but just wanted to let you know that I was thinking about you today and so sorry to hear of your 5-day admission for heart arrhythmia’s. I was hoping that your wait for new lungs was uneventful, except for the actual call and that you weren’t having any issues. You’re right it is common with IPF/PF, but still not fun especially when they require a hospital admission. Glad to hear this latest episode also doesn’t jeopardize your listing! How is the waiting going?

      Thinking of you and wishing you well!
      Charlene.

      • peppermom

        Member
        September 25, 2018 at 3:27 pm

        Hi Steve. I was also hospitalized for 4.5 days with AFib (finally diagnosed) and the Dr. have had quite a time deciding which medication to put me on that won’t affect my Esbriet or other meds. However, they do have me on one that seems to be working. When I first get up I find my rate is anywhere from 135 down to 68 or near there and it jumps up and down. Causes some concern but now I find it is mostly due to my shortness of oxygen. I have a problem of remembering to breathe through my nose/nasal canula so makes my O2 Level low (as low as 74) which I then have to work at to increase it. I am normally on 3 litres at home and at 4 when I am walking or working. Still my O2 level plummet. My lungs just do not work well anymore. After I take my meds and get my O2 increased then life becomes normal again. Happens every morning.

      • Charlene Marshall

        Member
        September 26, 2018 at 12:16 pm

        Hi Joyce,

        I know your reply was to Steve, thanks for taking the time to respond to his query, but if you wouldn’t mind, I have a question for you. Did your doctors ever link the AFib to your IPF diagnosis? I’ve heard rumblings (although not from credible literature yet, I haven’t spent time looking it up) that your heart can become very compromised when your lungs aren’t working well, due to the heart overworking. I would imagine this has the potential to cause issues with AFib? Maybe not, but that makes sense to me and I’m curious if your doctor ever mentioned this link to you?

        Glad you seem to be managing okay though Joyce, although so sorry we’re all dealing with this cruel illness. Hang in there!

        Charlene.

  • janet-durgin

    Member
    September 21, 2018 at 7:53 pm

    Hi Steve,

    Thank you for responding to my thread.

    • Charlene Marshall

      Member
      September 22, 2018 at 8:58 am

      Hi Janet,

      I have unfortunately heard about PF impacting the heart as the other organ effected secondary to IPF/PF. I know patients who have been diagnosed with pulmonary arterial hypertension as a result of their heart having to work so hard due to poor lungs which is incredibly frustrating!

      How have you been feeling as of late? The forgetfulness or “brain fog” as I call it is very prevalent for me as well unfortunately. This is a really frustrating side effect as a young adult who should be able to remember things easier. How is the colitis management going for you?

      Hopefully there has been some improvement and that you’re feeling a bit better. Hang in there!
      Charlene.

  • janet-durgin

    Member
    September 25, 2018 at 4:19 pm

    Hi Charlene,

    I am doing better right now. The colitus is under control.

    Hanging in there for sure.

    Janet

    • Charlene Marshall

      Member
      September 26, 2018 at 12:19 pm

      Hi Janet,

      Thanks for your reply and letting us know how you’re doing. Glad you’re doing a bit better, and some of the unpleasant side effects are under control. I will pray this continues for you!

      Please feel free to write anytime, I’m glad you’re part of our forums.

      Regards,
      Charlene.

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