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Recent dx of IPF: What Q's should we ask the doctor?

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Qva
Qva

My 85 yr old husband was recently dx with IPF after  pulmonologist reviewed results of CT scan.  This doctor walked up through the films of the scan, explained the layers of fiber and the fluid in the bottom of both lungs.  He  told us very little except that there was no sure-thing treatment, but that he would start my husband on a test run with the antibiotic Cefdinir and Prednisone and see him one month later, which will be Jan 18, 2016--this coming Monday.  The prescriptions seem to have helped, but my husband's condition seems to still get weaker and he has trouble breathing at night.  We've done some researching, trying to get more familiar with this disease, but are still very confused.  I'm making a list of Q's to take to the appnt and decided to ask for some help from those who have been through this before:  Which Q's are most important to ask?

 

1 like, 19 replies

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  • Qva
    Qva

    Posted

       brenda62546  charles97600  neville93106  (Is this  way to reply 3?)

     Brenda, Charlie and Neville, thanks from Jerry & me.  Yesterday, we went off with  our compiled list of questions and really caught Dr R's attention;  first thing he said was, "My, someone's been doing some research."  My overall conclusion of the appnt is mixed.   Thanks to all the help you gave me, having the questions printed and labeled (with date, Jerry's name as patient and mine as caregiver printed in the headliner) resulted in a lot more questions being answered.  Got off to a bad start though, when Jerry's oyx read 95% during check-in, and both dr and his nurse assumed Jerry was in pretty good condition; this was confirmed by Jerry, who was feeling pretty good and happy to be able to talk and smile with someone besides me for a change.   Without the questions, I think  Dr R might have sent us out the door with an instruction or two, a referral to Pulmonary rehab, and our next appnt 6mo away.  He make it clear Jerry did not need supplimental oxy, but possibly an inhaler for tough times, but thanks again to the questions and my determination to talk about each one them, Dr R decided that just to be on the safe side, he'd have Maria (assnt) take Jerry for a walk in the hall; Jerry's oxy reading after they returned:  85!  Change of plans:  Dr R made referral to oxy provider and new xray (checking for any change since ct scan ) and a follow-up appnt with us in 2 weeks.

    Son & dau-inlaw coming tomorrow for long weekend visit planned months ago following a bus. meeting they have in Las Vegas.  They are wonderful friends as well as kin, and it will be great to have them here.  "Here"  is in Surprise, Arizona, about 30 min NW of Phoenix.

    Thank you all--words that just don't begin to say what's in my heart for the three  of you.  Relax while you can, as you have not heard he last of me.

    ~Qva

     

    • brenda62546
      brenda62546 Qva

      Posted

      Qva, I am also happy to have helped, and any time you have any more questions, or need any help, please ask! Also, enjoy your visit with your family too. Hopefully now, his walking may be more easier with oxygen. It is important to try to get him stronger by walking short distances, or, some sort of easy exercises, or pulmonology re hab classes. The exercises will take time, but will do wonders for him. I am also hoping he could qualify for the medications, such as, Esbriet? Please keep us updated, and good luck!

      ♡♡

  • neville93106
    neville93106 Qva

    Posted

    Glad to have helped!!

    good luck and keep smiling.

    neville

    • Qva
      Qva neville93106

      Posted

      We now have an oxygen generator (can't remember the right name) and 3 small tanks of oxy, a carry bag + what looks like yards of tubing, etc.    He used oxy in bed last night, but then in his recliner when he started coughing after 3-4 hrs.  Tried an extra pillow, but didn't work.  If the new xray shows more fluid, he'll have his lungs pumped and maybe that will cut the coughing.  For the time being that's all Jerry needs, as he can leave the house and do okay if he goes slowy--and keeps the carrier with tank in the car or golf car.  He doesn't golf anymore, but uses the golf car to get around locally.

      I like the idea of the small tanks/batteries, and can see that maybe later, when his need increases, i'll re-read your post about equipment. 

      Hope alll goes well with you today.   ~Qva

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