Post-IV Clinic Tomorrow Morning

March 18, 2010 · 7 comments posted in Life with CF

Friday morning is my 2-week post-IV clinic appointment. This morning, I weighed 120lbs and I weighed 121 tonight… after… well, #2 and #1. /grin!!! I should be in good form tomorrow morning for several reasons:

  • I’ve been averaging over 3,500 Calories per day (I think that’s low, but oh well). I was right, the Excel sheet was not counting the first 64 cells of my diet list. I’m averaging 4,150 Calories per day.
  • Checking my calendar, I’ve only missed one treatment in 8 days – today’s Vest because I was gone all day and Beautiful immediately passed out when we got home.
  • I started AZLI again on Tuesday morning.
  • My weight is stinking awesome!
Date Weight FVC FVC % FEV1 FEV1 %
2/19/10 114.4 2.1 49% 0.98 27%

Predictions for tomorrow after the jump and feel free to post your predictions in the comments.

For those like Ronnie who have differing hospital/IV experiences from me and haven’t read my story in his comments, the doctors here (Tampa) keep you out of the hospital at ALL costs. For one, home health is 100% covered by my HMO, so it doesn’t cost me a stinking dime and I don’t need to go anywhere for anything. The treatment balls fit in my pocket and I can go to school with my last dose hooked up and flush in the restroom or car. I’m never on more than 14 days unless my bacteria gets into a gram-positive/gram-negative war that blossoms into a mess; then I get 21 days. I simply cannot get better in the hospital because of the food and incompetent nursing. I have to be constantly vigilant to be sure they don’t kill me (I’m not exaggerating) and they wake you up at all hours for the most ridiculous things. Let me sleep, woman! Go check on the old man down the hall screaming for a nurse. If it wasn’t for constant glucose/saline fluids, I’d lose so much weight you’d think I was in a concentration camp because I refuse to eat what they serve me and Beautiful has to go down to the cafeteria Sbarro and spend $8 on a decent meal for me.

I have a port in my right pec and Beautiful is a PRO!!! at accessing it and dressing it. We will be recording my next flush and will go ahead and dress it for the heck of it. (Dad, can we borrow your new camera to use the video recording?)

Predictions

Beautiful: 34% FEV1 %
Fatboy: 38% FEV1 %, 120lbs, 98% O2 sat

My dietician wrote back and suggested tracking my enzymes with each meal and snack to help her help me get the most out of everything and make sure I'm doing things right.

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Fatboy is a small business coach and WordPress guru in Tampa. With clients across the globe, he works from home and enjoys fixing dinner every night for Beautiful when she comes home.

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  • http://www.mywpdiva.com jillchongva

    I'm trying to lose mine and trust me I'd send it if I could! Onward to healthier beings :)

    j :)

  • Jesse Petersen

    Thanks, but I've had plenty of offers. I'm only accepting hardcore muscle, though, and no one seems to be willing to part with their precious muscle. /grin

    I'll post an update on my regular Twitter tomorrow to check out the results unless you want to follow @cffatboy.

  • Unknowncystic

    I'm going to go with 36% percent, though I hope Fatboy is correct.

  • Jesse Petersen

    You may be right, but I'm the eternal CFer optimist.

  • Unknowncystic

    My doctors are the same way. I have to be sick to get IVs. I have to prove I'm sick. They have certain criteria to tell if I”m sick. When I start to feel better they kick my a** out and send me home to complete the treatment. When I was young, I went to a clinic and got a picc line, then did the whole treatment at home.

  • Jesse Petersen

    Yeah, my doctors differ wildly from Ronnie's. There's no way in the world they would put me on antibiotics (oral or otherwise) unless my stats are down. There is just no word “tune-up” in their vocabulary – certainly not for 4 weeks when I'm relatively healthy just to eek out an extra 5%.

    At our age, the risk of resistance is too great. Heck, I'm already resistant to almost the whole panel. They put me on Dorabax and Tobra nowadays because I eventually also became allergic to cefepime! Cipro = nada. He said you might as well stick a Cipro up my butt and see how my lungs do on that. ;-)

  • Unknowncystic

    Cipro occasionally still works for me if I'm on an inhaled antibiotic and the infection is really localized to one area. I was on it a month ago and doing better than got the virus from hell and down I went for my time in the hole. Cipro did nothing at that point. The bacteria was every where in my lungs.

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