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.
1. Empty Gelatin Capsules 0 Size -1000 Empty Capsules |Manufactured in North & South America|Kosher & Halal Certified |Gluten Free
Sentiment score: 1
Number of reviews: 4
✅ HIGH QUALITY: Our capsules are manufactured and packaged in state-of-the-art cGMP certified facilities meeting all health compliance requirements. Our capsules are made using only 100% Pharmaceutical grade gelatin.✅ RAW INGREDIENTS: Made from 100% bovine hide, our gelatin capsules are Kosher a...
2. Philips AVENT 3-in-1 Electric Steam Sterilizer
Sentiment score: 2
Number of reviews: 3
Kills 99.9 percentage of harmful germs and bacteria without using chemicalsSterilizes in just 6 minutes with automatic shut off for speed and safetyKeeps contents sterile for up to 24 hours if the lid is unopened; It is Philips Avent range compatible3 in 1 adjustable modular design allows you to fit...
3. SinuCleanse Soft Tip Neti-Pot Nasal Wash System - Includes 30 All, Natural, Pre-Mixed Buffered Saline Packets - Relieves Nasal Symptoms and Congestion due to Cold, Flu, Dry Air, or Allergies
Sentiment score: 1
Number of reviews: 3
Uses the gentle flow of gravity to deliver the all-natural saline solution into the nasal passages, with the soft tip to create a comfortable nasal washing experienceUnique, clear view design - BPA and Latex FreeBreathe Easier with the Power of Salt - Includes 30 all natural, pharmaceutical grade, ...
4. Optimum Nutrition Serious Mass Weight Gainer Protein Powder, Vitamin C, Zinc and Vitamin D for Immune Support, Chocolate, 12 Pound (Packaging May Vary)
Sentiment score: 2
Number of reviews: 1
Vitamin C, Zinc and Vitamin D Provide Immune Support along with Vitamin EPackaging may vary - New look, with the same trusted Quality!High Calorie Weight Gainer: 1,250 Calories per 2-Scoop Serving50 Grams of Protein per Serving for fueling Intense WorkoutsOver 250 Grams of Carbohydrates per Serving2...
5. BUG HULL Pill Organizer 2 Times a Day Upgrade Version, Easy Open AM PM Pill Box with Push Open Button, Twice a Day Pill Case, Medication Organizer for Vitamins, Fish Oils
Sentiment score: 0
Number of reviews: 1
UPGRADE VERSION Pill TRAYS - Day and night trays facing to the same direction.LARGE CAPACITY PILL CONTAINER - Can storage 9 fish oils or 8 large vitamins in each compartment.EASY TO OPEN - Push open design pill dispenser, easy to open for the elderly, kids or arthritis.BPA FREE - Our medicine organi...
6. Patterson Medical Anabox 7 Day Pill Box with 5 Compartments Per Day - Rainbow
Sentiment score: 1
Number of reviews: 1
One Anabox Weekly Pill BoxColour: RAINBOWThe outer caseis designed so thatthe dispenser is easily detatched and replaced. Ifit is held upside down the dispensers will not fall out.A medication chart is attached to the bottom of the case with space to write the patients name, medication notes and det...
7. Ezy Dose Push Button (7-Day) Pill, Medicine, Vitamin Organizer Box | Weekly, 4 Times a Day, AM PM | 2XL Compartments | Arthritis Friendly | Clear Lids
Sentiment score: 1
Number of reviews: 1
7 DAY PILL ORGANIZER: AM/PM compartments help you to easily plan and distribute your daily dosesEASY USE: Keep medication visible and help prevent missed dosesPILL CAPACITY: Holds up to 30 pills per compartment (aspirin-sized)BUILT TO LAST: Quality design, Built to withstand repeated useHEALTHY LIVI...
8. Nasal Irrigation Device Adult Nasaline 1 ea Each
Sentiment score: 1
Number of reviews: 1
Control of sinus related infectionsDrug-free relief from pregnancy congestionFollow-up treatment to sinus or nose surgeryRelief from symptoms associated with nose polyps or after the excessive
9. All-Filters CP-6005 Cut to Fit Carbon Pad for Air Purifiers
Sentiment score: 1
Number of reviews: 1
Cut-to-fit charcoal sheetMade in the USA by all-filtersRemoved odors and voc's form the airCan be cut to fit air purifiers, range hoods and furnace filters
10. Optimum Nutrition Gold Standard 100% Whey Protein Powder, Double Rich Chocolate, 5 Pound (Packaging May Vary)
Sentiment score: 1
Number of reviews: 1
Packaging may vary - New look, with the same trusted QualityGold standard 100% whey blend – 24 grams blended protein consisting of whey protein isolate, whey protein concentrate, and whey peptides to support lean muscle mass – they don't call it the Gold Standard of quality for nothingOver 5 gra...
11. Nestle Carnation Instant Breakfast Vhc Lactose Free Vanilla 250Ml - Case of 24 - Model 9871633900
Sentiment score: 1
Number of reviews: 1
Nestle Carnation Instant Breakfast Vhc Lactose Free Vanilla 250Ml - Case of 24 - Model 9871633900Manufacturer: Nestle - Model 9871633900HCPCS: B4150Category: nutritional supplements/enteralsCase of 24
12. Indestructo Pill Box - 6 Per Package (Color May Vary)
Sentiment score: 1
Number of reviews: 1
Easily transport your medicationLid snaps tightly to avoid accidental openingAssorted solid colors
14. Microlife Digital Peak Flow Meter (PEF) and Forced Expiratory Volume (FEV1)
Sentiment score: 1
Number of reviews: 1
240 Memories for Children & Adults with Date & Time stampPeak Flow and FEV1 monitoring for asthma, COPD & other lung diseasesMeets American Thoracic Society StandardsStop Light Risk Indicator, Tracking & Analysis software3 Washable Mouthpieces
15. Medela Quick Clean Micro-Steam Bags
Sentiment score: 1
Number of reviews: 1
EASY STEAM CLEANING: Quickly eliminate 99.9% of most common bacteria and germs in only about 3 minutes, using just a microwave and water, for convenient cleaning anywhereTHOROUGHLY DISINFECTS IN ABOUT 3 MINUTES: Quick Clean Micro-Steam Bags are designed for efficient, effective sanitization of most ...
16. Honeywell 50250-S True HEPA Air Purifier, 390 sq. ft, White
Sentiment score: 1
Number of reviews: 1
LARGE ROOM AIR PURIFIER: This HEPA purifier captures up to 99.97% of microscopic allergens 0.3 microns & larger from the air that passes through the filters. Effective for large & extra large roomsSPECIAL FEATURES: This purifier features 3 air cleaning levels, SurroundSeal Technology to minimize air...
17. Honeywell 17000-S QuietCare True HEPA Air Purifier, 200 sq. ft.
Sentiment score: 1
Number of reviews: 1
Captures up to 99.97% of microscopic allergens, 0.3 microns and larger, from the air that passes through the filtersElectronic push button controls. Making it up to 35% quieter3 cleaning levels. Tobacco Smoke: 130. Dust: 130. Pollen: 130SurroundSeal Technology helps minimize air leaksTo ensure state...
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.
https://www.amazon.com/Cystic-Fibrosis-Guide-Patient-Family/dp/1608317536/ref=sr_1_8?ie=UTF8&qid=1485064540&sr=8-8&keywords=cystic+fibrosis
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
http://www.amazon.com/Microlife-PF-100-Meter-Spirometry/dp/B000BH8TUA
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.
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!
https://www.amazon.com/Universal-PushÕn-Reminder-Green-1-Pack/dp/B01IRNW644/ref=sr_1_20_sspa?ie=UTF8&qid=1524775142&sr=8-20-spons&keywords=med%2Btray&th=1
https://www.amazon.com/Weekly-Button-Medtime-Planner-Reminder/dp/B001TEWKMM/ref=sr_1_10_sspa?ie=UTF8&qid=1524775142&sr=8-10-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. :)
I use these pill boxes: https://www.amazon.com/gp/product/B000KL740S 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.
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
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: https://www.amazon.com/Honeywell-50250-S-True-HEPA-Purifier/dp/B00007E7RY
Just a few tips from someone that's gone down this road:
The most important thing is for you all to stay healthy out there. If Cannabis helps, more power to you.
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.
https://www.amazon.com/gp/aw/d/B0057ECYS0/ref=mp_s_a_1_1?ie=UTF8&qid=1518004654&sr=8-1-spons&pi=AC_SX236_SY340_QL65&keywords=bottle+sterilizer&psc=1
I have this one: https://smile.amazon.co.uk/gp/product/B003ZINHHC/ref=ppx_yo_dt_b_search_asin_image?ie=UTF8&psc=1
It looks good and has plenty of compartments for each day which is a great help for the amount we have to take lol
http://www.amazon.com/Nestle-Carnation-Instant-Breakfast-Lactose/dp/B000NOOQXK/ref=cm_cr_pr_pb_t
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.
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.
http://www.amazon.com/SinuCleanse-Nasal-System-Plastic-Packets/dp/B000TFR6MG/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1457895347&sr=1-2&keywords=neti+pot
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.
This filter has been great for my 8 month old daughter with CF. Here are a few tips though:
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.
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: https://www.amazon.com/Body-Fortress-Advanced-Protein-Chocolate/dp/B0048JEORY/?th=1
Mass Gainer: https://www.amazon.com/OPTIMUM-NUTRITION-Serious-Protein-Chocolate/dp/B000GIPJ0M/?th=1
Medela Quick Clean Micro-Steam Bags, 5 Count https://www.amazon.com/dp/B000096QQ5/ref=cm_sw_r_cp_api_RP5KzbDCE9HF6
This should be as good as the baby bottle sterilizer.
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: http://www.amazon.com/gp/product/B000050AQ5/ref=oh_details_o08_s00_i00?ie=UTF8&psc=1
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.
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.
I just got this one and really like it. https://www.amazon.com/gp/product/B07P183DHZ/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1
Alex: The Life Of a Child.
Very sad, but worth the read.
http://www.amazon.com/gp/aw/ol/1558535527/ref=mw_dp_olp?qid=1394674786&sr=8-6
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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.
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^That's ^why ^I'm ^here, ^I ^don't ^judge ^you. ^PM ^/u/xl0 ^if ^I'm ^causing ^any ^trouble. ^WUT?
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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.