Best products from r/CysticFibrosis

I find I too get nauseous, but only when playing games where you are smoothly moving forward, like you would in a car game or something similar. Hellblade vr is a classic example. I could only play that for 30mins or so before I would feel the motion sickness.

However, playing the games above ( in the YouTube links ) I don't get motion sickness at all !

So I completely recommend it if you have a decent enough computer system to run VR. The only bad thing about VR currently is the price, but I can honestly say it's the best money I've spent because I get a decent sweat on and work out when I'm able to, and it's such good fun.

I never got anything like that out if going to the gym. So for me it's totally worth it . And I really feel more people could benefit from trying it out because of how fun it is . It's a great escape .

You can even play nintendo Wii games in VR also using the dolphinVR emulator.

https://youtu.be/wpFQA8PNyuE

https://youtu.be/sWi3rDE7DYA

https://youtu.be/BQ8VaZyZ1fA

https://youtu.be/m9WMLAOJUNg

https://youtu.be/7TAn1fyNbqI

If any of you do have a decent computer or a good GPU, price wise I totally recommend a Windows mixed reality headset.

They are not quite a good as an oculus rift or a HTC Vive when it comes to tracking, but I have to say they are still surprising good ! and a lot more portable if you want to take the VR with you , if you are using a laptop .

https://www.amazon.co.uk/Lenovo-Explorer-Reality-Headset-Controllers/dp/B0764GKZ15?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-fpas-uk-21&linkCode=xm2&camp=2025&creative=165953&creativeASIN=B0764GKZ15

I have the Lenovo explorer, but I also own a HTC Vive. If you can find the Lenovo explorer or any other wmr headset for a decent price it's worth getting because you don't need any external sensors if you need to take the VR setup on holiday or in hospital.

I really think us cf'ers should look into VR for exercise alternatives as well as their normal routine as it's a really fun way to move about. So it's great for body and mind !

I mainly use the VR and dance mat games when I'm unable to get out for a walk ( if the weather is bad or something ). So I use the VR ,weights or dance mat games if I can't get out .

This is a decent dance mat game ( for exercise ) if anyone has their old Wii laying around

https://youtu.be/ffnUtDsvswI

https://youtu.be/YmOVEFaMymk

https://youtu.be/H_BPMZqMTqM

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

AliExpress is stuff straight from China, they're not exactly known for shipping quality stuff (and shipping takes forever!) but I have gotten a fair number of decent things. Generally, it seems like you get what you pay for, and that's not an unreasonable price for a peltier cooler, so it might be worth a shot. One other trick: Things sold on AliExpress are often also sold on Amazon (at a higher price), so I looked around and found an identical-looking product here with a much better description and plenty of reviews.

That specific fridge looks like a Peltier cooler--basically, instead of a traditional fridge, it passes electricity over a special piece of metal, which makes one side cool and the other side hot. They're often limited by the ambient temperature, so if it's warmer outside then it won't be able to get the internal temperature as low. Several of the Amazon reviews for this specific one complain that the temperature inside doesn't get low enough, it can be more like 55F in spots instead of 45F.

My usual technique is to just pack a standard cooler bag with plenty of ice packs (I even get the ice packs free with the pulmozyme shipments) and rely on hotel fridges and such to re-freeze them. I take it your itinerary wouldn't make this a good option for you?

Be sure to let us know how it works if you decide to go for it!

I have been taking this protein for a while now and it is absolutely amazing, yes it is expensive but it is worth it in general because of how great of a product it is and the benefits that it can even have for us CFers. Below I posted 2 links one is the benefits of WHEY protein in cystic fibrosis and one is the protein that I use and have been using for the past 5 months. I am not sure where you are located I am in Canada and buy from a Popeyes supplement store so I posted the amazon link instead. There are other whey protein isolates our there I suggest doing research but this has been great for me and I have been seeing muscle improvements since I started taking it but I really work at it, diet is important and so is your gym routine. I hope this helps.

https://www.naturalhealthresearch.org/whey-protein-improves-health-of-young-adult-cystic-fibrosis-patients/

https://www.amazon.com/Magnum-Nutraceuticals-Quattro-Protein-Powder/dp/B00CBY73XK

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.

Definitely get a couple of good purifiers for the main areas of the house he spends a lot of time.

I have a RabbitAir for the living area: https://www.rabbitair.com/products/minusa2-air-purifier?variant=29446108577815

A smaller Winix unit for my bedroom: https://winixamerica.com/product/p150/

I also have a small BlueAir 411 for my office: Blue Pure 411 Air Purifier 3 Stage with Two Washable Pre-Filters, Particle, Carbon Filter, Captures Allergens, Odors, Smoke, Mold, Dust, Germs, Pets, Smokers, Small Room https://www.amazon.com/dp/B073WJDQMN/ref=cm_sw_r_cp_api_i_Ua8MDbSQP8GVM

Now, the Rabbit is a great unit, but it ain’t cheap. I have had the Winix for maybe 4 years and it runs great. It was the first hepa purifier I bought. I picked up the Rabbit and Blue at the same time a couple years ago when we moved to a bigger place. They all work as advertised and I have never had issues with them.

Keep in mind there is also the yearly cost of replacing the filter, and with most replacing a pre-filter every few months. But they are so much better than the cruddy filters you get in most A/C systems.

There are lots of other great units and brands across a range of prices, so do some research to find what is best for your family. Keep in mind the size of the room when picking a unit. No need spending on something you don’t really need size wise.

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:

• 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.

Get a plastic cup (large size from a Starbucks or similar place). Put your vials inside it, in their original foil. Then put that cup inside a cooler bag. I have this one: https://www.amazon.com/gp/aw/d/B00HJ8DFGC/ref=mp_s_a_1_2?ie=UTF8&qid=1496014511&sr=8-2&pi=AC_SX236_SY340_QL65&keywords=freezer+cooler+bag&dpPl=1&dpID=51iR9i1OV3L&ref=plSrch

It works well bc you freeze the entire bag! It's gel lined. You can also add more ice packs to this type of bag. If you use a regular style of cooler bag you'll obviously need lots of ice packs. But I've had TSA agents tell me I can only have so many ice packs, which is bullshit...but not much you can do. With gel lined bag that isn't as big a concern.

Then, bc I am a worrier, I use a thermometer with a long cord on it. I zip the gauge end of the thermometer in the bag, taped to the top so it's not actually touching any icepacks. And then I can keep an eye on the temp from outside without opening the bag and letting any of the cool out! Mine is the type of thermometer people use in aquariums/reptile tanks.

Typically this set up can keep my stuff at fridge temp like ~6 hours. Not opening the bag helps big time. Which is why I love the long cord thermometers! After that I have to ask for ice (like from the flight attendant or at the airport when I land). I don't know how far any method will get you on the length of flight you describe. But it's a good start.

Edit: pack some empty large gallon size plastic bags for putting ice into (like when you add ice during your layovers). Most bags, including mine, are not water tight. Better if the ice melts inside a baggie rather than your cooler. Mine leaked all over the floor of the plane. Whoops

Nobody can understand what we go through except others with CF. I'm not saying we have it harder than anyone else, just that there is no possible way for another human being to understand what we're going through. I don't know what it would be like to be blind or to have cancer or anything else for that matter. People do their best and if they think they understand what you're going through it's just ignorance on their part. I'm not intending that to be a negative remark.

One thing that helped me a lot was a book that my Dr. recommended I check out. It's called the road less traveled (link below). This book helped me grow so much emotionally and really helped me deal with CF. CF is an unfortunate disease to have, but we are so fortunate that there is so much in our control. We can always be doing more treatments, more exercise, eating better, etc. Don't get me wrong I know there is plenty out of our control but it always helps to look on the bright side of things.

Stay tough. You'll make it through this and continue to be a strong human being.

http://www.amazon.com/Road-Less-Travelled-Psychology-Traditional-ebook/dp/B0078XGEK2/ref=sr_1_1?ie=UTF8&qid=1405452044&sr=8-1&keywords=the+road+less+traveled

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

I'd never heard of anyone doing it either. I just got curious about ways to clean the foils better and started experimenting. I just use soap / water in the solution and run it for about 10 minutes.

​

https://www.amazon.com/Magnasonic-Professional-Ultrasonic-Eyeglasses-MGUC500/dp/B007Q2M17K

You're totally fine! Don't worry about it, one missed dose isn't the end of the world, it happens. I use a daily pill organizer that really helps because it's split up into day and evening for each day of the week, so you don't even have to think about it. Something like this: https://www.amazon.com/dp/B072VQY7M7/ref=sspa_dk_detail_3?psc=1&pd_rd_i=B072VQY7M7&pf_rd_m=ATVPDKIKX0DER&pf_rd_p=f52e26da-1287-4616-824b-efc564ff75a4&pf_rd_r=S2MRSV67B9A9Z9K318J4&pd_rd_wg=86uw2&pf_rd_s=desktop-dp-sims&pf_rd_t=40701&pd_rd_w=25qE6&pf_rd_i=desktop-dp-sims&pd_rd_r=4a5dea26-d0ca-11e8-ba98-5b089291c505

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

https://www.amazon.com/dp/B00HVGZ2J0/ref=twister_B07LBYCYWF

I own 7 weeks of these bad boys. Perfect for travel, fun colors, and very dependable. I do the 3 times a day deep organizers, but this company has a few different options. The only thing is they can be a bit difficult to open, but when I load them I just use a letter opener to save my nails.

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?

Here is the desktop version of your link

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.

Here is the mobile version of your link

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.