CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • My Method For Staying Organized With All The Supplies While On Home IVs To Make Them Go Smoothly

    I had a CF friend suggest that I share how I store my IV supplies along with how I prep my doses after I showed her pictures of my system. haha.

    My first step when my supplies are delivered…I open ALL 972 of my saline and heparin syringes so that I get really frustrated and angry at those stupid wrappers (that RARELY make into the trash can because of the static cling) all at once instead of with every dose. The saline and heparin aren’t in sterile packaging so you can open them all at the same time and don’t have to wait until it’s time to do my doses. For me, opening them all at the same time helps with how I do things. (Picture below for proof that those stupid wrappers go EVERYWHERE)

    Next step…I put all of the saline, heparin, huber needles (port needles), dressing change kits, Tegaderms (I don’t use the cheap Tegaderm that comes in the dressing change kit, they irritate my skin), auto claves, end caps, etc. in the drawers where I keep all of my IV supplies. I also keep my non refrigerated inhaled meds, extra Pari nebs, travel nebulizers and much more in the same drawers. (Pictures below to show how I organize my supplies along with a picture of the all of the drawers. I got the drawers from Costco. Unfortunately, they are no longer available…sad Shannon)

    Now, onto how I do my doses. This is what works for me. It may not work for everyone but I thought it may give people an idea for a way to do things. I have quart size baggies with the dose times written on them with magic marker. I reuse the baggies over and over again. I don’t toss them each time, that would be silly with how many doses I have and how many times on IVs. I put 2 saline, 1 heparin and an end cap in the baggies so that all I have to do is put the dose in and go. It makes it super easy if I’m going to be gone at my dose time. I can toss it in my purse and go. Even when I’m home I still use the baggies so I can grab it and head to the couch so it’s there when the alarm goes off that it’s dose time. I have 2 days worth of baggies with dose times that are loaded with what’s needed for each dose on the kitchen counter ready to go. If I’m on more than one antibiotic, I use the same system. I just put in the number the of saline I need. If you are not familiar with SASH that you use when on IV antibiotics, here’s what the acronym stands for…SASH is saline, antibiotic, saline, heparin. If there is 2 antibiotics you add in an extra saline between doses. (Pictures below)

    The antibiotics are stored in the fridge. I take them out before the dose time so it gets to room temperature. If you aren’t sure how long the dose is stable at room temperature, Google is your friend. Of course, the IV pharmacy tells you to take your dose out 2-3 hours before it’s time to infuse…however…most antibiotics are stable for much longer. I personally take out my next dose when I get finished with the current dose with most antibiotics I’m usually on. The baggies I showed are for every 6 hour doses (obviously haha). Depending on the antibiotic…the doses are every 6 hours, 8 hours, 12 hours or every 24 hours.

    I think that covers it. If you have questions, ask away. You can comment on this post. Don’t worry when your comment doesn’t show up right away. I have it set to where I have to approve the comments to be posted. It’s a way to stop the spam comments. You can also send me an email at LTLHOOK@gmail.com.

    Until next time…

  • ‘Tis The Season…For IVs

    I woke up Tuesday morning coughing much more than normal. My cough at least was productive sounding and not tight sounding (asthma inflammation type cough). I woke up feeling like utter crap Wednesday morning. I canceled the appointment I had that morning and slept until noon. I just so happened to already have an appointment with CF clinic today, so it was good timing.

    My lung functions were 29% and 30%. So they are stable compared to the 31% I had at my last appointment, 6 or so weeks ago. With my increased cough, increase in sputum production (I should say, actually having any production at all for once), fatigue and over all blah feeling we decided to go ahead and start home IVs. I will be doing IV Zosyn every 6 hours for 14 days.

    We are NOT doing any prednisone right now. The goal is to stay off of prednisone for as long as possible but especially until after my appointment with pre transplant clinic in 5.5 weeks. They wanted me off prednisone if at all possible. I made it this far, by golly I’m pushing through! Yes, I am VERY wheezy but it’s “manageable.” It’s the tightness combined with the wheezy that makes it very hard to breathe. I’m NOT crazy tight at the moment. *fingers crossed*

    Next order of business…the amount of arthritis pain I’ve been having. I’ve just been dealing with it for quite a while now but it’s gotten pretty intolerable. So I finally caved and asked for something to help. The mornings are the worst. My hands and fingers are very stiff and I’m unable to make a fist. I have trouble gripping things, opening water bottles, typing on my phone, etc. They hurt like HELL!!! I am going to try meloxicam (an arthritis oral med) to see if it helps give me any relief. I’m also being referred to a rheumatologist for further evaluation.

    Since I was getting my normal labs drawn that I always do when I start IVs, they added in inflammation markers to see where they are. One stick in each hand and nine tubes later, we got all the blood needed. For those wondering…my port was not accessed to get labs drawn from it. Also for those wondering…the only place I have left for blood drawls are my hands or some random places they find when they have to get creative. The bends of my arms are ALL scar tissue from years and years of being stuck. If you stick a blood drawl needle in that area on either arm, the person “trying to” drawl blood will feel the pop of scar tissue as will I and I basically can hear it. It’s so much fun. NOT!

    If you didn’t know, there is such a thing as CF related arthritis. CF is the disease that just keeps on giving. Just add it to the list of issues I have. I’m just lucky like that. CF is not only a lung disease. It involves many aspects of the body.

    Here’s to hoping that I start feeling better soon.

    Until next time…