Update from the Hole: Day 15

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Wednesday, September 14, 2011

Update from the Hole: Day 15

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Megan M. · 707 weeks ago

Hi Ronnie! I just wanted to tell you that I also feel worse the first few days of inhaled Tobi. I can't explain the feeling, just maybe a bit tighter? Also, your aunt and family will be in my prayers. I hope all goes well.

1 reply · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thank you so much for the prayers Megan! Yeah, it's so weird about the TOBI thing, I'd love to know what it is.

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Marisa · 707 weeks ago

Praying for your aunt - praying for a successful surgery, complete healing, and a better quality of life for her.

I am wondering if you could explain PFTs - specifically FEV1 levels - just a little bit. My son is an asthmatic (has been screened for CF as his asthma is quite difficult to control, but tests have come back negative) and he often does PFTs. His doc always reports the FEV1 level to me and we track it pretty consistently. They seem to use that number (in addition to his symptoms and physical appearance) to tweak meds and treatments and I don't feel like I have a great understanding of what that number means. What would be an ideal FEV1? Is it 100%?

Praying your time in the hole improves your overall health and you arrive home feeling tip top and ready for baby!

Thanks!

3 replies · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thank you for the prayers Marisa!

FEV1: Forced Expiratory Volume in 1 second. This is the amount of air you can blow out in one second. It's given as a percentage because it's a value based on a predicted number. For instance, based on my height, weight, sex and age, they will predict that I should be able to blow out let's say 3 liters of air in the first second. If I only blow out 2 liters of air in the first second, that would mean that I blew out 66% of what they predicated, thus giving me an FEV1 of 66%. Does that make sense?

And yes, 100% would be ideal, but the low normal range is I believe in the 80's. When I was in high school, my FEV1 was over 100%.

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Tara · 707 weeks ago

Just a correction, because I am a stickler for details. FEV1 is not only the volume of air exhaled in one second, but it's the volume of air blown out in the first second during that big forced exhalation. Also, the parameters to calculate the FEV1 are ethnicity, age, sex and height. It has nothing to do with weight.

Ronnie, are you on IV tobramycin? I'm baffled as to why they would make you waste your time (and risk the bronchospasms) on such an mediocre treatment such as TOBI (or any inhaled antibiotic) if you are already on IV tobramycin. My usual cocktail typically includes tobramycin (or another amino glycoside) so I get a pass on the inhaled abx while I'm on IVs, as I truly believe all CFers should since the efficacy of inhaled anything is so much lower than IV treatment.

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RunSickboyRun 96p · 707 weeks ago

How dare you correct me in public!!! ;)

Thanks for the clarification as reading back now I see that I could have been more clear.

I'm on IV Mero and Vanco. So inhaled antibiotics have lower efficacy than IV antibiotics? I was under the impression that inhaled antibiotics are not only more targeted, but could be given at more concentrated doses.

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Kellie Davenport · 707 weeks ago

Praying for your aunt and for the 3 of you as always!! Keep pressing on brother!!! Lots of love to you all!!!

1 reply · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thank you Kellie! Your prayers always mean a lot to us :)

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Lauren · 707 weeks ago

HI RONNIE:) Thinking about you being in the hole! GOOD LUCK. keep up the hard work~ Will pray for your auntie~ xo

1 reply · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thank you Lauren!!

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mary kearns · 707 weeks ago

Prayers for you and your Aunt ~ hang in there Ronnie!!! You are in my prayers! <3

1 reply · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thank you Mary. Very much appreciated!!

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Amy · 707 weeks ago

Thinking of you and your family! Hope all goes well for your Aunt. Sending good thoughts and hoping you feel better soon.

1 reply · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thank you Amy!!

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heleadsus 32p · 707 weeks ago

Do you take the Tobi in the flow? Just curious. We will start it this week (as soon as the doctors figure out where to get it from for the e-flow). Our daughter has been on it twice and "freaked out" in a serious manner both times. We had to hold her down, she said she felt like she couldn't breathe. We are hoping it is better this time around. 28 days is a long time to hold her down as she is bigger now. An adult perspective or any hints would be helpful. I know CFer's are tough people and she will get used to it, but any help would be appreciated.

Also, just said a prayer for your aunt.
In His Strength,

3 replies · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

I take TOBI from a regular neb. Is your daughter on any other inhaled antibiotics?

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heleadsus 32p · 707 weeks ago

No, praise the Lord, our daughter is not yet on any other antibiotics. This is the second time she has cultured PA (1st time about 4 years ago) and the third time she will be using TOBI (manufactured for the eflow). We have looked into getting a different neb this week too (the mobileair psi50) to see if that would help with the whole time issue. We have the eflow and use that for a few med's, but then use a regular neb for the other ones.

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RunSickboyRun 96p · 707 weeks ago

I thought the TOBI went pretty fast in the eFlow, no?

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san · 707 weeks ago

keep up the good work, ronnie! soon your pft-s will be starting to climb again and things will brighten up again. i am sure your two girls (mandi and your peanut) will help you get over the time, all the best, san :)

1 reply · active 707 weeks ago

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RunSickboyRun 96p · 707 weeks ago

Thanks San! I will definitely continue to work hard for both my girls :)