Forum Replies Created

  • barbara-schwenzer

    Member
    July 25, 2019 at 5:28 pm in reply to: After Care Requirements for a Lung Transplant

    Thank you for sharing, Mark & other posters!

    Questions..

    1) How long post surgery before you’re able to go out (with or without mask)?

    2) What determines if you get a single or double transplant?

    3) How well does one lung do?  My father had 1/2 of one lobe removed due to lung cancer.  He lived for many years, however, his breathing was diminished.  Curious, if you were on O2 before the transplant, wouldn’t your one diseased lung still require O2?

    Thank you,

    Barbara

  • Hello,

    I was diagnosed with IPF in 9/18; after living with COPD/emphysema for some time; so a double whammy for me.  I’m 65 years young, live in Indianapolis, receiving care from my wonderful pulmonologist, a cardiologist, pain doc (for previous chronic pain issues), and my primary care, all local in Indy.  I’m into my third week of pulmonary rehab, as a prerequisite to a transplant.  I do not know of a support group locally, so I come here.

    Thank you!

    Barbara

  • barbara-schwenzer

    Member
    July 2, 2019 at 6:11 pm in reply to: Addressing Anxiety Following a PF Diagnosis.

    As part of my initial intro to Pulmonary Rehab last month, I had to fill out a questionnaire about stress, anxiety & depression.  I answered NO to wanting to hurt myself, but all other questions came up showing “you bet.. I am absolutely depressed” ..go figure!!! LOL  At age 64, last September, 2018 I was driving & active (as active as I was going to be given my disability since 1991 with Fibromyalgia, Chronic Fatigue Syndrome, DDD, etc., etc.).  I’d already received my dx of COPD (emphysema) several years ago, but in 9/19 was told I also have IPF with 2-5 years.  What???!!!  That’s not long enough to see my 7 year old grandson, who is MY LIFE, grow up, graduate, college, etc!  Still, feeling relatively normal, I was very active, including being his room parent (in charge of classroom parties); as well as a 30 year volunteer with the Boy Scouts of America, camping at least monthly with my boys, and 1 week each summer.

    Fast forward from 9/18 to 12/21/18, where I had to be hospitalized for a week due to my extreme SOB.  This grew into 3 hospitalizations from December, 2018 to May 15, 2019.  I’d gone from no oxygen to 3 lpm active/0 resting (on a portable unit) to my current 6-8 lpm active/2 lpm resting; and told I can no longer use conserving O2  I was extremely weak & fatigued; had to give up all my volunteer work, and had become homebound, then bedfast in May.  My pulmonologists & I discussed a lung transplant and that one requirement would be rehab.  I’d quit smoking March 1, 2019 and additionally was on steroids from December through June, so I quickly gained 40 lbs!  That’s enough to make anyone depressed, right?

    Anyway.. they abruptly halted my rehab, until I saw their psychologist, who also diagnosed me as depressed; saying I need to find a counselor & ask my PCP to put me on medicine.  I’m happy to say that I was welcomed back to rehab, which was initially making me weaker; but I’ve grown stronger in a short time.  Just learning how to properly do pursed lip breathing made a huge difference!  My husband was wheeling me in to rehab in a wheelchair, but on the 3rd day, my rehab therapist had me walk out by myself.. 150 feet!  Thought I was gonna die, but I did it.  I slept like crazy that afternoon. 🙂

    Bottom line.. I can’t help but think that anyone would be anxious or depressed when faced with the inability to breathe!  My pulmonologists & I had already discussed it, and he put me on Paxel in December.  Unfortunately, I had to quit as it was too harsh on my tummy.  I’m also dealing with a fair amount of cramping & diarrhea from my Esbriet (but I continue to take in hopes it will help).  My research into lung transplant has also caused me anxiety as I hear the prognosis is no more than 5 years following transplant.. making me question if it’s worth the hassle of not going out for 18 months; requiring a mask to go to mailbox, lifelong anti-rejection meds, etc.  Hope I’m wrong, but I’m obviously still stressed, anxious and depressed.

    Thank you for *listening!*

  • barbara-schwenzer

    Member
    April 11, 2019 at 10:58 am in reply to: Six-Minute Walk Tests

    Interesting topic.. thank you all!

    Had my first & so far my only 6 MW on 12/24/2018, as I desperately wanted to leave the hospital to enjoy Christmas with family.  I was first diagnosed with IPF on 9/25/18, feeling fine until a COPD exacerbation in mid December landed me in-patient for a week.  My 6MW told them I could go home, but only with o2 at 3 lpm during exertion.  I had to keep stopping to rest, each time checking my pulse/ox.  I never improved much, altho I did make it to a couple of doc appts, and weekly visits with my 7 year old grandson, and only with my husband’s help.

    My dear husband has become my caretaker, bless him, as I am too weak to even shower.  I try to do sponge baths every 2-3 days, but it’s now 2 weeks between showers, which is not acceptable!  I have a shower stool & handheld sprayer, but I’m simply too weak.  Sorry, this is becoming another topic altogether.

    Unfortunately, after a second stint in the hospital the first of March, this time by ambulance as I couldn’t walk to vehicle, I am now up to 4.5 lpm, 24/7.  They did not ask for another 6MW, instead, they set me up for home healthcare & in-home PT.

    So much for the 2-5 years he gave me in September.

    Barbara

  • Thanks, Charlene.  I will absolutely report back with what my pulmonologist says.

    Dr. Oz had a segment on hair loss, which has been a real problem for me for years now.  I figured it was from the various meds I take.  PCP said my thyroid.  Interesting to now hear it’s also a side of insufficient Vitamin D.  Be nice to learn it cures IPF.  We could all wake up healthy with a full head of hair!!! ???

    Remaining optimistic,

    Barbara

  • Very interesting, Charlene.  My primary care informed me that my Vitamin D is extremely low, along with B12, and thyroid.  She attributed my increased fatigue to this (all prior to IPF diagnosis).  I too will discuss this with my pulmonologist next month.

    Thank you!

    Barbara

  • barbara-schwenzer

    Member
    January 20, 2019 at 8:32 am in reply to: PF Online Support Group: Update

    I’m new here, so don’t really understand how this works, but I am thrilled to have a forum like this to share how we cope with IPF.  Thank you to Charlene & other moderators/admins (?) for doing all that you do to keep us organized!!! ?

    I will definitely complete the survey.

    Have a great day, everyone!! ?