Jay Turbes-s
Forum Replies Created
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Well, I replied to this yesterday ad nauseum, but it disappeared into a black cyber-hole somewhere. Consider yourself spared.
To the point: try Patient Services Inc. to see if you qualify for a subsidy on your meds. under their “public insurance” category.
HTH…!
J. in CO
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Hi, Charlene
OK, what’s this — newsletter, right? If not, then I don’t get a newsletter anyway and this is a forum. Whatever this is, I can’t get a confirmation msg. when I try to enroll here using my email. It just keeps saying “nope, you need to re-request a confirmation msg.” … etc. I’d like to stop using Fb login since they’ve shown themselves to be less than security worthy.
Cheers!
J. in CO
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Hi, Charlene
The webinar info. says:
Intended Audience: Physicians, Nurse Practitioners, Physician Assistants, Pharmacists, Nurses, and Case Managers
— not including “plain folks” like patients and caregivers. The head guy for this webinar, Dr. Cosgrove, CMO at National Jewish, is known to most with respiratory issues here in the Denver area. By my experience as an IPF caregiver here in CO, National Jewish is an elite institution like Mayo that doesn’t involve regular people unless you’re a lab rat candidate for one of their many drug trials. Their pulmonary rehab. program refused my charge as a patient of CO’s most prominent HMO, Kaiser/CO, and they don’t encourage non-National Jewish IPF’ers to enroll in their IPF Care Center Network program. For “plain folks”, they’re pretty expensive.
Ergo, I’d question whether this webinar is open to all comers.
FWIW…
Oh, and as an aside, I never got any help from your admin. in securing a newsletter-specific signin…so I’m still using the less desirable and less secure Facebook login. FWIW 2.0 🙂
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I think it’s strange and sad the PR isn’t a “given” for IPF. We here in CO had no idea that it was an integral part of IPF treatment, and her provider Kaiser/Permanente never advised her or offered it until two years after her diagnosis and a new and more competent pulmonologist (“What?? You weren’t told about pulmonary rehab?? Oh, gee…well, here’s a list of places you can go…”). None of those were Kaiser facilities, and also not included was the pre-eminent respiratory center, National Jewish. By the time we were made aware, Milady had “progressed” to a stage where simply getting to PR and the value it would add are both now pointless.
Like getting Esbriet or Ofev prescribed, getting help from Kaiser/CO was a struggle and nothing was a given. Irrespective of the health care provider, if an IPF patient doesn’t have someone on the outside to run interference for them, they’re screwed. A healthcare provider/pulmonologist who practices empathy and advocacy is also too much to ask for. Now she is being told by Kaiser to appear for something called PFT when she barely can move from room to room. If she doesn’t show up, they’ll pull her Esbriet medication — the only thing they do for her in once-a-year visits with a pulmonologist.
My own COPD isn’t helping, and I’m running low on ideas. With IPF, one needs a friend who’ll scream and shout. Don’t expect it from your so-called “healthcare team”.
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We use the Salter “high-flow” (1600HF-7), but not because it reduces runniness but because it has proven quieter at night running 6L/min. Again, anecdotal. There’s still runniness, and I’d suspect anyone with the concentrator’s optional in-line humidifier flask would have the runniness problem as well. We tried it for O2 that was drying out the nasal area but it just got messy so we stopped it. Even with the high-flow cannula, morning runniness is pretty heavy and aggravates coughing. During the day, things are pretty good.
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Related to this topic, I’ve tried two different sign-ups to this forum, been told that a confirmation email was on the way to my registered address…nothing ever shows up. That, in spite of repeated re-requests for another confirmation email. And yes, I’ve checked my junk, my two alternative email addresses, looked under the couch, etc. Nothing.
I’ve used two usernames (webistrator and “noergler” — German for “curmudgeon”) but to no avail. So I’m left with using Facebook to log on, not my favorite thing to do as it also puts me on the air there as well. I can’t believe that I’m the only one who’s experienced this problem…
FWIW…
Jay T.-S. (no, it doesn’t mean that either…!) — and what’s with this little “p” mean at the bottom of this dialog?
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As a back-to-basics question: why is prednisone prescribed in the first place?
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With the caveats about avoiding sun exposure that come with Esbriet and living in Denver where sun is frequent and strong, we (I’m a caregiver for Milady who has IPF) loaded up on sunblock clothing (which she rarely uses…) and are on a calcium supplement containing 1,000 IU’s of D (most calcium supplements have D to aid assimilation). I would guess that Ofev has similar caveats.
Cheers!
J.