If you’re living with cystic fibrosis, your life, to an extent, revolves around treatments. For 2+ hours a day, everyday, we’re doing treatments. Some of us can breeze through our treatments if our CF hasn’t progressed, while the rest of us feel like we’re getting a good workout in with each session from all the forced coughing. Something all of us can agree on, though, is that there are ways to make treatment time easier – here are my tips.
I’m a big believer in plastic cups. I use two cups with each treatment session – one to hold all of my meds (vials, syringes, alcohol swabs, etc. [see picture]), and one to collect my spit. I can obviously reuse the one that holds my meds, while the one that I use as a spittoon goes into the garbage (after a thorough cleaning).
Some nebs smell or taste horrible – generally the inhaled antibiotics are to blame. I use one of those nose clips that we wear during PFTs to fight the smell. If the taste also proves to be unbearable, I’ll chew gum or suck on a mint while I’m nebbing the antibiotic. I did have to get the latter cleared by my doctor.
Baby bottle steamer
Sterilizing the nebs is the worst part of the whole process, in my opinion at least. Within the last year I switched over to the microwave baby bottle steamer from the old fashioned boiling method. It has cut off 15-20 minutes from the sterilization process, and I’ve even convinced myself it does a better job of sterilizing the nebs. First I go through a good washing with warm soapy water, and then I rinse the nebs before finally popping them in the microwave bottle steamer. I use this guy:
Eat AFTER treatments
I think this one applies to the morning treatment session more so than the evening one. Hitting the Vest right after breakfast is a great way to see your breakfast for a second time…
Mouthwash or rinse
I’m not so sure our bodies were designed to inhale medications. Avoid sore throats with mouthwash or cup of water right after treatments.
Stay productive during treatments
I actually find that I’m really pretty productive during my treatment sessions. I use them as a time to send or reply to emails, write blogs or work on anything else that I may need to get done. I think it’s important for people to play an active role in society! Don’t let the disease consume you…. let’s use the 2+ hours we’re sitting down each day in an active way!
Do treatments in a common area
I’ve been a big believer of this my whole life. I always do my treatments in a common place. I’ve never been one to sit in bed and do my nebs. The most important reason behind this is that it socializes my treatments. I’ve always had people around me while I’m sucking down some Pulmozyme. I think it serves as a great teacher for people who may not be familiar with CF, but more importantly it’s taught me to be open with my CF with just about anyone. It also forces me to get out of the bed in the morning, especially if I’m not feeling well, and it prevents me from falling asleep at night since I’m not yet in bed.
If you’re using a syringe, get rid of it (SAFELY) as soon as you’re done
If I had a dollar for the number of time I’ve accidentally stuck myself with a syringe after reconstituting Colistin, I’d be a wealthy man.
Plan your evening treatments ahead of time
The evening treatment session seems to be the one that gives people trouble (probably because we all feel like shit in the morning and actually need to clear out the lungs before doing anything). I always think it’s best to know WHEN I’m going to be doing the evening treatments before that time rolls around. If I know I’m going to be out of the house, heading to a dinner with friends, a party, an event or something of the sort, I like to get my meds done before going anywhere. Generally if I’m getting my treatments done before anything social, I can lift any self imposed curfew because I’ll already have my health taken care of. This rule was a big help in college, and where I really learned to follow it.
High-speed neb cups
I’ve always felt that it is appropriate to spend a little extra money on convenience when it comes to my treatments. There is a difference between neb cups as far as speed and performance are concerned. In fact, certain medications call for better neb-cups. I fully endorse the Pari Sprint LC. It cuts down on treatment time, and I am confident it is delivering medications deep into my lungs. Ultimately our treatments only work when we are consistently compliant with the routine, so why not make it easier? Buy a little extra time in your day. If you really surf the web you’ll be able to find an affordable deal on Sprint LC’s. They also last for a long time, so I think they are totally worth it. If you have a tip on a better neb, I want to know about it!
There you have it…. 10 tips to make treatment time easier. How do you remain compliant to your treatment routine?
Make sure you listen to Breathe In Episode 10 to hear how the Salty Cysters and I remain compliant with treatments!
My Friends from the CF Center at Loyola University Medical Center are conducting a survey about alcohol use within the CF community. You should be a real pal and fill out the survey – it’ll only take 5 minutes of your time (I promise, because I’ve done it). Patients only, please! Click HERE for the survey.