Top products from r/CysticFibrosis

We found 35 product mentions on r/CysticFibrosis. We ranked the 60 resulting products by number of redditors who mentioned them. Here are the top 20.

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Top comments that mention products on r/CysticFibrosis:

u/Simms59 · 1 pointr/CysticFibrosis

I have to agree with the notion on cardio being the best bet. However, when I asked my doctor who studies this stuff and wrote an awesome book, he told me the following: "The best exercise is the exercise that you enjoy and will continue to do." It's easy to say that you should go jogging or do sprints, or pick up Boxing or Crossfit or something. If you hate all of those activities, you will never stick to the exercise regime and thus won't see any benefits anyway. I would suggest something you enjoy that also gets your heart rate pumping. I have been using a stairmaster pretty religiously (get's my heart going fast) and I use the gym's swimming pool and hottub as the carrot to motivate me to workout. I also enjoy tennis, so I play that when I can.

u/oliviagreen · 2 pointsr/CysticFibrosis

Congrats on getting Kalydeco!

I've been taking it for about for almost a month now. I have G551D and DF508. I'm 26 years old.

When I started I was at my lowest lung function ever at about 55%. I started getting serious about exercising and doing TOBI for the first time in years about two weeks before i started taking Kalyedco and I have to say... to anyone that isn't running. start. really it makes a huge difference.

so the combination of running/TOBI/kalydeco has brought my FEV1 up to around 68%-70% in the last month which has been amazing. its hard to say how much of it is the running and how much of it is the kalydeco, but i will say that even after the first two weeks of running i still had a congested chest .. and i didn't exactly "wheeze" but if i was laying quietly i could hear this like ticking sound in my lungs when i would breath in and out, no matter how much i coughed i could never get that to go away. and just after a few days of kalyedco it was gone. i also don't cough at night at all anymore really. sometimes before i would not be able to sleep because of a cough and i'd go to the couch to relax / not feel like i was keeping my husband awake. hasn't happened since i started taking kalydeco!

i didn't cough up crazy amounts of mucus. i read a lot of blogs of people who did and was was worried it wasn't working. i've had maybe 3 days where i felt like i was bringing up more than usual. but what i have noticed is that if it is there, it comes up easier. other people also said they felt like their sinuses really opened up, which i also did not feel. i just saw a nose doc, and he told me its not mucus in there.. but that i just have inflammation in the lining, so i have some new nose spray and antihistamines for that.

i've gained 7 lbs from 119 to 126. and to be honest i was never much of a breakfast person, so forcing yourself to eat a fatty meal in the morning can be hard. I keep cheese sticks and peanut butter in the house at all times in case im too lazy to make something better.

i didn't have any of the negative side effects so i'm hoping that over time ill slowly be able to increase my FEV1 even more. My next check-up is in three months :)

I did buy an FEV1 monitor off of Amazon

I think it is awesome to not have to wait until you go to the doctor to check where you are at. and you can do it over and over again.. good practice.

u/imaliver14 · 1 pointr/CysticFibrosis

Have you ever considered getting a med tray? You can get smaller ones (for travel?) with just one or two comparents per day for a week, or a big one with four compartment. They are super helpful, since you can premake your meds and not have to worry about it!Õn-Reminder-Green-1-Pack/dp/B01IRNW644/ref=sr_1_20_sspa?ie=UTF8&qid=1524775142&sr=8-20-spons&keywords=med%2Btray&th=1

Edit: links

You could probably find one at your local pharmacy, too. It's a small thing, but is super helpful. If you need to travel, you could just pop meds out of the tray and into a ziplock, or have different trays for home and travel. Just an idea. :)

u/km3k · 2 pointsr/CysticFibrosis

I use these pill boxes: They hold about 7-8 Creon 24000 pills and are small enough not to be a problem. They do rattle a little at times, but not enough to bother me.

Luckily, I usually only need 1 creon pill per meal/snack, or 2 with a larger fatty meal, so I can get by with a smaller case. Others here might need to carry more at a time.

I'm open to other options though. I think efficiency in volume and ease of opening/closing would be the most important things for me. The case that lach88 uses looks interesting, but I don't need to carry that many at once and don't want to take up that much space.

u/WarriorTNT · 2 pointsr/CysticFibrosis

Hey there, I'm a 25M personal trainer with CF, have been using protein supplements for about 8 years from age 17 to 25. In that time I've gone from ~105 to 160 and back down to 140, leaner than I started. Just get some basic whey protein like this.

If you want to gain muscle mass, you need to eat enough, it's just as important as exercise. If you want some tips for how I've managed to do so, I made a comment a while back on this sub here.

Good luck! feel free to message me if you have any questions

u/theresapossibility · 3 pointsr/CysticFibrosis

I have one! it's a big Honeywell one. I don't have breathing issues but I use it because my rabbits shed like crazy and people come into the house that are allergic to them. It really helps them breathe a lot better and it helps in general. I'm very happy with it.

This is the one I have:

u/futt · 2 pointsr/CysticFibrosis

Just a few tips from someone that's gone down this road:

  • If you do want a vaporizer, the Arizer Extreme Q can fill up bags of vapor that are way less harsh.

  • If you do inhale the vapor, it's going to act like an expectorant, and you're going to bring up some good chunks of sputum. That with some CPT really clears out my wife's lungs.

  • Edibles are a really good way to go, but dosage is really up in the air, and lasts a long time.

  • Decarboxalated (activated) Marijuana (Baked at 240°F for 40 minutes) can be consumed directly, put into capsules, and dosed out for a more controlled delivery method.
    • One of these (.2g) tends to be enough to give my wife the munchies, making those 74,000 units of Creon more effective.

    • I use these myself for upset stomachs, and they also work wonders with nausea.

      The most important thing is for you all to stay healthy out there. If Cannabis helps, more power to you.
u/ELO628 · 3 pointsr/CysticFibrosis

I have a bottle sterilizer which has been a lifesaver. And it makes using distilled water on the altera nebs way easier. I wash everything at the sink from the tap, shake off the excess after washing, put them in the steamer, and use distilled water as the steaming water. So far it’s worked well. I haven’t had any build up of hard water on the nebs b/c the steam really soaks them.

Wish I’d known about bottle sterilizers years ago, I used to stove top boil too. This is the one I have, I highly recommend.

u/Feadern · 1 pointr/CysticFibrosis

I have this one:

It looks good and has plenty of compartments for each day which is a great help for the amount we have to take lol

u/bstkeptsecret89 · 2 pointsr/CysticFibrosis

That's the one I was talking about. It has 560 calories in one can. They're really good at helping you put on weight. And they don't taste bad. They're really good if you make a smoothie or milkshake with them.

u/xDlelLoL · 2 pointsr/CysticFibrosis

If I may make a suggestion. This is significantly cheaper and 1,000 times more effective than any nasal spray I know of. Ask anyone on your CF team or any ENT doctor or allergist. They will agree.

I've been using it whenever my sinuses get bad and it works wonders. Just be sure to use water that was bowled and then cooled down. Mix one packet of the salt/banking soda into the water, stir, and pour it in gently letting it run out the other nostril. There are countless youtube videos showing how well it works and how to do it.

u/FightOrFlight · 1 pointr/CysticFibrosis

This filter has been great for my 8 month old daughter with CF. Here are a few tips though:

  • They say the filter lasts a year, they don't. If you're using acetylcysteine or changing diapers near it, it'll last 3 months. When they go bad you'll notice a funky wet dog smell coming from it. That's $10 every 3 months.

  • Buy bulk carbon pre-filters and swap them out every month. You'll see a noticeable difference in air quality by doing this step. I buy these, cut them to twice the size of the filter, fold them in half, and attach them to the filter. Way better bang for buck thus way.

  • Consumer Reports noted that the only time these clean the air is when they're set to high and on 24/7. According to CR, this set doesn't have a lot of horsepower. The most it can clean is a small room.

  • You should also count on spending more on your electricity bill. On this unit I spend an extra $10ish per month since it's on 24/7.

    All in, you're looking at $180-200 a year to run an air filter this size. More if you get a larger unit with a more expensive filter.
u/TheOriginalArkadian · 1 pointr/CysticFibrosis

I use a Mass gainer in the morning at about 9:00am then I use a protein shake with my workouts in the evening.
Protein shakes and Mass gainer shakes are all well and good but I would recommend using them to only pad meals, just as an extra, that way your still getting the majority of your nutrition from real food.
Here are some Amazon links for what I get. The Protein shake can be purchased at Walmart if there is one near you.

Protein Powder:
Mass Gainer:

u/Amanda116 · 3 pointsr/CysticFibrosis

Medela Quick Clean Micro-Steam Bags, 5 Count
This should be as good as the baby bottle sterilizer.

u/sqrlsjustwannahvefun · 4 pointsr/CysticFibrosis

Get a temp/hygrometer, it'll tell you humidity. Basements are notoriously humid. A dehumidifier can easily fix that. You want it at about 35-40%. Since you recently had it finished it could also be the fresh paint and carpet. You can get a decent air purifier for about $100. Here's what I use after I researched alot:

u/rosiem88 · 2 pointsr/CysticFibrosis

If you all love the article, check out his book, Can't Eat, Can't Breathe, and Other Ways Cystic Fibrosis has Fucked Me. It's hilarious and a refreshing read about what it's like to live with CF.

u/ladymysla · 1 pointr/CysticFibrosis

When I was younger I read

Give me one wish

Stevie's Secret

and Mallory's 65 roses

The second two are kind of geared toward the younger crowd, but the first one was absolutely brutal. Definitely eye opening for someone who had super mild CF.

u/arrisonrenee · 1 pointr/CysticFibrosis

HHere ya go! It doesn’t have a drying option, but after doing tons of research this is what we chose. The price can’t be beat.

u/LittleHelperRobot · 0 pointsr/CysticFibrosis

Non-mobile: Here is the mobile version of your link

^That's ^why ^I'm ^here, ^I ^don't ^judge ^you. ^PM ^/u/xl0 ^if ^I'm ^causing ^any ^trouble. ^WUT?

u/Pheo · 4 pointsr/CysticFibrosis

We use this.

We used to boil everything until the day I left everything boiling on the stove and forgot it. All of the nebulizers melted together into a colorful slab of plastic.