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Thread: Time to vent...

  1. #21
    Senior Member willingtocope's Avatar
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    So, the MS Specialist the Infectious Disease refered me to wants no part of long term antibiotics.

    I'll keep looking...

  2. #22
    Senior Member willingtocope's Avatar
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    Alrighty then...I emailed THE guy at Vanderbilt and ask if he knew of any doctors in Iowa that could even spell Chlamydophila pneumoniae. Nope.

    But he did send a testing protocol...I'll see if the ID Doc will at least order the tests.

  3. #23
    Senior Member willingtocope's Avatar
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    No response from the ID Doc's email. I guess I have to call...

    And, in the meantime, I called the PT Doc's office this morning to see about getting my powerchair. I've called every week for the last 5 weeks, and got shunted off to the PT specialist's voice mail..who never called me back. So today, I talk with the secretary...she says 'oh, yeah, the doc signed the papers on last thursday, we sent them on to the DME. Its in their hands now". So, I cancel the appt I had with him for next Monday...what do I need to see him for, at least until I get the chair?

    And then, I call the DME. "yes, we got the papers, but Medicare says we need more records from the doctor." I say, "but I've still got BC/BS thru work". "Doesn't matter...they'll want to see the Medicare paperworK'.

    So, I call the PT doc'''s office back and explain what the DME said. "huh?", she says. "Does this mean I do need to see the doctor next week?", I ask. "Don't know, I'll ask the doctor and call you back".


    ARRRRRGHHHHH!

  4. #24
    Senior Member willingtocope's Avatar
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    Well, the good news is...I don't have to see the PT Doc until June...hopefully after I've got the powerchair. I hope that means they've faxed the DME people what they need.

    The bad news is...evven though the EF Doc put Chlamydophila pneumoniae on my records, he wants no part of testing for it let alone treating it. He says I should see my PCP.

  5. #25
    Senior Member willingtocope's Avatar
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    PCP says "NO! If the ED Doc says no antibiotics, I'm not going to get involved".

    Time to find a new PCP.

  6. #26
    Senior Member willingtocope's Avatar
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    Quote Originally Posted by hlh View Post
    Unfortunately the wheelchair will probably take many months to come.
    Damnit, you're right. After fighting the paperwork battle with the PT doc and the DME (neither one seemed to know everything the doctor needed to sign), supposedly the DME will have everything they need today...or tomorrow...to submit to my insurance. The DME says it will take BC/BS "a couple weeks" to decide, and if they approve then the DME will build my chair.

    So, if there are no further "yeah, buts"...I might get a chair by July.

    In the meantime, I've found a medical group here in town that specializes in "infectious diseases in immunologically-compromised patients" but they require a referal. I've asked my PCP for a referal. If he says no, he's fired.

  7. #27
    Senior Member willingtocope's Avatar
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    Got an email from my PCP. His practice will talk with the other medical group and see if they're interested in seeing me.


    OOOkkkayyyy.

    Hurry up and wait...again....

  8. #28
    Senior Member willingtocope's Avatar
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    So, yesterday morning about 8:00am, we had a little power outage in my assisted living building. Couldn't have lasted more than 30 seconds.

    But, whatever two years out of college architect that designed this place put in thermostats that automatically reset to HEAT when ever there is a power failure. So, from 8am yesterday, I had no cooling...the heat didn't actually come on, but neither did the air conditioner and it was in the 80's by 5pm. Since I still work, I was concentrating on a problem and didn't notice it was getting warmer in the apartment.

    By the time I went to bed to watch TV around 7pm, I could barely walk, and was sweating heavily by the time I got to the bed. Since I have to call for an aide to help me get into bed, I asked her to check the thermostat. It was reading 92 degrees.

    With MS, anything over about 75 just sucks the strenght right out of me. The air conditioner ran all night.

    The thermostat is about 12 feet out of my way in going to bed...if I would have detoured to look at it, they would have had to pick me off the floor agian.

    Its these little minor day-to-day annoyances that are beginning to pile up on me.

  9. #29
    Senior Member willingtocope's Avatar
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    Got the powerchair! Remarkable! Fits in all the rooms...I can get to the bathroom sink to shave...up, down, recline. Now all I have to do is figure out how to incorporate it in my daily routine.

    Getting in and out is a bit of a problem, but I think that's managable. Not having a flat surface to carry thing around on, or hooks to hang my grabber on...I need to figure that out. Got to put my pants on BEFORE I start work in the morning, since I'll be using my BIG computer over on the desk.

    Where am I going to park it to charge so it isn't in the way when I need to get up one or two times a night to pee...and for that matter, how am I goiing to carry the urinal bottle around? Transfering to the toilet is going to be interesting, but at least now maybe I can gets the building aides to help me shower (hot water just destroys the use of my legs...I couldn't walker from the shower to the bed, but if I can ride, it might work).

    Damn...I'm never satisfied. These are not major,life threatening problems, but...just not what I wanted to be dealing with at this time of my life.

    Oh, and my PCP did refer me to the other infectious disease guys in town. I'll need to educate them on Chlamydophila pneumoniae.....

  10. #30
    Wow - that's great! Congratulations.

    Maybe you can get a couple PT visits in your apartment to help brainstorm all those issues? Just a thought.

    Glad you have progress on several fronts. But you're right - there's always something....

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