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  • What do you find is the reason behind most of your hospital stays?

    Posted by William on February 16, 2023 at 8:25 am

    In October of 2021 AND 2022, I found myself in the hospital for pneumonia. I’m hoping the third time isn’t the charm this year. Coincidentally, I was admitted on the same day, October 25th.

    Prior to this, I was admitted to the hospital over the years for a bunch of different reasons like complications from anesthesia, asthma, and diabetes

    What do you find is the reason behind most of your hospital stays? Is there usually more than one reason? What frustrates you most about that reason?

    William replied 1 year, 3 months ago 4 Members · 8 Replies
  • 8 Replies
  • kathy-gunter

    Member
    February 16, 2023 at 4:41 pm

    Exhaustion from the build up of inflammation and infection?  Honestly, I really feel like I should go in more often than I do.  I have been averaging once or twice a year now for the last 3 years.  Although by sheer Grace I have been mostly stable over that time period, because of covid numbers taking up hospital rooms for so long (and my team discouraging inpatient stays to keep me safer leaving my only option home IV), I haven’t been in as often as I’d like or think I really should have been.  We call it a “charge the battery” session.  Although the actual IV drugs while in the hospital generally drain me and make me wonder sometimes if it is all worth it, after the horrific side effects have worn off after a couple of weeks at home, that is when I really feel the benefit of the stay.  My energy begins to rebuild and I can breath a bit easier!  I suppose I should mention that I am 52 and not eligible for any of the modulators, so I’m still “old school” with treatments and so forth.  I know the CFF has good intentions, but I truly feel that with the rarity of my mutations and length of time it takes for new treatments to actually get to patients, I will be left behind.  Gotta hope and pray that I am wrong on that note.  At last clinic visit, my FEV1 was 36%, so I am hanging on by a thread.  So far, I have been blessed not to have had Covid  – not sure how I’d fare without the benefit of a modulator to help me through it.

    • William

      Moderator
      February 16, 2023 at 6:43 pm

      I didn’t know there was an age limit for the modulators! That’s actually really upsetting to hear. I’d really try to see if you can get them. I know this last go around I didn’t feel “better” until I was done with my home IV either. I really wish you the best of luck with your journey!

      • kathy-gunter

        Member
        February 16, 2023 at 7:14 pm

        Thank you for your well-wishes.  I’m sorry.  I reread my post and I wasn’t clear.  I am not eligible for the modulators due to my mutations, not my age.  Sorry for the poorly worded sentence/confusion.

      • William

        Moderator
        February 17, 2023 at 2:05 pm

        It’s okay! I’m not (yet) eligible either, but maybe one day we will be. One can hope.

  • gina-michele

    Member
    March 10, 2023 at 8:00 pm

    Unfortunately, most of my hospital stays are with one of my loved ones, playing my part as a caretaker and doing all that I can to ensure that they are receiving the highest quality of care possible.  However, I take all the good days with the bad and would move mountains for any of my loved ones… and remember, there are no good days without some bad days.

    • William

      Moderator
      March 12, 2023 at 7:55 pm

      We must always realize the truth you said, we cannot have good days without some bad.

  • Timothy Bransford

    Member
    March 14, 2023 at 2:48 pm

    Hemoptysis.  Brought on by a lung  infection that just won’t die with oral antibiotics.  Usually, the hemoptysis is of a magnatude that I can’t put it off any longer.  At that point I’m told to go the ER and get inprocessed so  they can monitor and, ultimately, insert a PIIC line for IV antibiotics.  It is usually a 4 day stay in the hospital at which point I can go home an self administer the remaining IV treatment with Tobi/Ceftaz/etc.  The  whole ER drill is brutal.  I was able  to schedule the last PIIC insertion without the ER route and it was so much better.  Plus, I did not have to stay in a hospital bed to monitor since I’ve taken Tobi/Cetaz so often.

    BTW.  I am 66 years old.  I take Symdeko now.  I’m hoping to get approved for Trikafta  but I also have a rare genotype (G542X/2798+5G/A) so that might not  happen for a while.

     

    • William

      Moderator
      March 15, 2023 at 5:13 pm

      It’s awesome you’re able to take a modulator, even with a rare mutation. Hopefully there are quicker hospital stays for you along the horizon

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