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My Nebulizer’s “Dirty Head” for Colistin and Hyper-Sal 7% Saline

3 headsI mentioned on Twitter or the site (I’m getting so old now, I can’t remember anything) that I was using my “dirty head” at the moment. Someone asked for clarification, so I thought it to be worthy of a post now, so I can explain how I roll with 5 treatments in a row.

Pre-requisite reading: Fatboy’s Nebulizer Life

Now that you know my routine, here is the tip part of the write-up on the method I’ve learned after 4 years of having eFlows. I touched on it when talking about my 7% saline dose. Did you catch it? When I receive a new shipment of colistin, PSI is nice enough to send me a new Trio head. Getting Foundation Care to send a new head was like pulling teeth – it was every 3rd shipment and the metal disc was all bubbly and clogged by then. To say I’m happy with PSI would be a great understatement.

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Top Rules to Break in the Hospital

Please only do these antics if you are aware of your situation while in the can. Make sure your CF doctor even knows you’re there by calling the clinic number and getting whomever is on call. They NEED to know you are there!

I don’t get put in the can much at all – and usually only for blockages. Beautiful has only seen me in the hospital for my lungs once since she’s known me, and it was even before we were dating. Geez, I think it was something like February of 2001 when I was in for 3 days! Even overnight stays can be miserable if you don’t take things into your own hands.

I don’t try to be this way to be obstinate, though I am a very stubborn person, as is Beautiful, but it’s the fact that I’m in the hospital for observation, not control. My life is to be lived just as it were at home on home IVs, only they want me close to do more blood tests and to monitor my O2 levels.

Here are Fatboy’s “recommended” rules to break when in the can.

    Hospital breezeway

  • Bring your street clothes to put on ASAP in your room. Grab baggy PJ bottoms and white undershirts to wear. No one wants to see your butt or more any more than you want to show them. If the nurses protest, insist that they complain to your CF doctor. You can guess what their response will be about such a ridiculous complaint from a floor nurse.
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Making Cystic Fibrosis a Little Easier

I married a neat-freak. I’ve grown accustomed to it, and appreciate it immensely now as a vast improvement over my former way of life. That’s not to say that Beautiful and I haven’t had our fair share of verbal disagreements over where to put my medical supplies to make it easier for me. I’m going to come completely clean with this admission:

If it is out of sight, it is literally out of my mind.

I need visual reminders to do my meds, as I grew up in an environment where a stack or a pile was fine, as long as it was a stack. Over time, my mind grew used to seeing things of non-function in the same place every day. To this day, if I leave something somewhere (say, on the stairs) for more than a day, I will walk by it dozens of times as if it has become a piece of furniture to walk around. That being the case, you can only imagine how hard it is for me to remember something that is put away.

Couch area 1Besides, who wants to drag out your RespirTech inCourage Vest every day? We had to come up with a creative solution. I honestly can’t remember which came first, the vest or the end tables, but I think it was the tables. Maybe Beautiful will fill us in on that in the comments. I posed that if she would let me store it under the end table on the side of the couch I use to work most of the day, I would do it every day. Then came the “discussion” about what to do with the hoses and vest. LOL! It does fit nicely back there, but I have to be careful to not scrape the hoses on the paint on the wall.

We have placed my vitamins nicely on the table where I keep my drink(s) – notice 2 coasters so I can have both a Boost Plus and a chaser at the same time – along with my treasure chest of various pills that don’t go in the daily container. Everything looks nice so far, but it gets even better!

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Supplements and Vitamins – My New Life

PillsI used to hate taking my vitamins, and I still do. I also hated that powder my mom would mix into the milk that I’d pour onto my cereal every morning. I still hate it, but I married a super helper. She puts my pills into one of those old person pill containers on the end table for me every day of the week, and I’ve been doing much better taking everything.

What does Fatboy take?

Good question! My mom asked when they were over and I had to say,  “I don’t know. Beautiful puts everything in there and I take what she gives me.” Well, I’ve found out, and we’ll see if I know why I take everything, too. Keep in mind, this doesn’t include any of my enzymes (8 bottles of pills per month) or any of my aerosols or injectables.

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