Cystic Fibrosis Life Hacks

It’s been awhile since I’ve listed a few “life hacks” I use to make my daily routine with CF a bit easier. I originally wrote about this a long, long time ago… so we’re in need of an update!

The solo cup

Plastic cups are how I stay organized while I’m doing treatments. I use two cups at a time. One is a spit cup and the other holds all of the medications. I do four nebs during each session, and 3 of them come in individual ampules (you know, the plastic tubing with the twist top) and then I have an antibiotic that needs to be reconstituted before use. That process requires a syringe, sterile water, powder medication, and alcohol swabs. After I pour the medicine in the neb-cup, I put the ampule (or in the case of the antibiotic, the syringe and everything else) back into the cup where it came from. It controls the mess, and especially since I have dogs running around, it keeps them away from the little plastic pieces.

Baby Bottle Sterilizer 

I talk about this a lot because of how much I love it. I use a microwave steamer to sterilize my nebs. Remember, you MUST sterilize your nebs after each time you use them. They can just sit around between treatment sessions. The baby bottle sterilizer cuts down on the time it takes to clean them and makes the entire process stress free. We even did a video with it!

….this life hack also includes buying a collapsible bowl so I can wash my nebs on the go, instead of having to buy this pumpkin to do it.

Clorox Disinfecting Wipes 

Have you ever gone to the movie theatre and thought for a moment, “wow that looks super gross!” I bring (read: Darcy usually brings) Clorox wipes when we go to extremely public places, especially during cold and flu season, like movie theatres or common meeting places. They aren’t expensive by any means, and they are easy to buy in bulk. The wipes are just a first line of defense, and they don’t replace proper hand hygiene, but they are perfect on commuter rail lines, in the movie theatres, fast-casual restaurants and just about anywhere else. Clorox even says their products are effective against viruses and most bacteria.

Feeding Tube Supply Baskets

What good would a list be if I didn’t include my feeding tube people?! I went to HomeGoods and bought two oversized wicker baskets. One holds my feeding tube formula and the other holds pump bags. G-tube supplies create a lot of clutter, mostly because it all gets delivered in individual boxes. For years I dealt with it, until this past Spring when I started to using this method to clean up my room. It’s created more space, and has allowed me to get the boxes out of the house almost as quickly as they come in.

Illness Identification Card

When I was a patient at Boston Children’s during my college years, I was given what amounts to a fast-pass card. It essentially identifies me as a patient who needs “enhanced contact precautions,” which is important because most specialists around the hospital are not usually ready to deal with people have very unique needs – like us! How many times have you gone to get an X-ray only to follow someone who sounds like they’ve been smoking three packs of cigarettes every week of their lives for the past 10 years? You need to make sure that area is wiped down! You also need an isolated waiting area, not only to keep yourself safe, but also to protect other patients around you. You have no idea who is in there with you. The card is also extremely helpful for emergency room visits. ER staff will do whatever they can to maintain the integrity and safety of the emergency department, and if they know you’re walking in there with contact precautions, you’ll likely get flagged and ushered into a room as quickly as possible. It’s interesting to note that not every hospital system has these ID cards in place, which is actually why I still have mine from Boston Children’s. I insist upon using it wherever I am and demand they adhere to my needs. If your hospital does not have a system like this in place, talk to your CF clinic and see if they can direct you to the hospital/patient liaison to get it put in place!

Dedicated Credit/Debit Card For Medical Expenses

Did you know there are a few ways to play the tax game with your unreimbursed medical payments (copays, etc.)? If you elect to use itemized deductions, it is easily achieved if you track your medical expenses with a single card. I subscribed to a CapitalOne Venture Card last year where I get two “miles” for every dollar I spend. So, not only am I tracking my medical expenses with a single card, I’m also getting points towards travel.

From our friends at TurboTax: “Beginning Jan. 1, 2019, all taxpayers may deduct only the amount of the total unreimbursed allowable medical care expenses for the year that exceeds 10% of their adjusted gross income.”

Time for a little math!

Let’s say you earn a gross of $45,000 in a given year and you have $5,000 (all tracked with your card) in unreimbursed medical expenses. Multiple your gross income by .10 (10%):

45,000 x .10 = 4,500

Now subtract… medical expenses ($5000) – 10% of gross income ($4500) = $500

You’d be able to deduct $500 off your taxes at the end of the year.

You can click the TurboTax link above to learn more about it. Another way you can play the tax game is with an FSA card.

Talk to other people with CF

I often get a lot of questions about specific situations, and sometimes I don’t have an answer because I’ve never been through them. There is no better expert than people who have lived through certain times. I like to call on other people with CF who have been through recurrent hemoptysis, IV courses or anything like that so I can prepare myself to face them as well, or learn how they persevered through those times themselves. There is no shame in searching for an answer if you can’t get one… sometimes you just need to talk to the right person, so you can apply some advice to your own life to help you through a tough situation.

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