(Part 2) Top products from r/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.

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

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.

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. https://www.amazon.com/dp/B000U204W2/ref=cm_sw_r_cp_apa_R4RSBbD51NZ2R
  
  
• 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.

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.

Oh, also, nasal irrigation (see link) with sterile nursery water and those little salt packet things really helps me. I buy the nursery water (meant for making baby food/formula) at CVS, boil it 1 minute then let it cool. Then add in 1 salt packet to 1 cup of that water. Then you just irrigate both sides. It comes with instructions. It really helped my ongoing sinusitis.

https://www.amazon.com/gp/aw/d/B001JQGTAY/ref=mp_s_a_1_11_a_it?ie=UTF8&qid=1482449690&sr=8-11&keywords=nasal+irrigation

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.

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

If you have enough closet space somewhere, this has worked well for us.

http://smile.amazon.com/Alera-3-Tier-Rolling-39-Inch-Anthracite/dp/B005FDX5IG

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

https://www.amazon.com/dp/B00LE99PA2/ref=cm_sw_r_sms_awdb_cqPmzb9HXH0QE

All work outs have 3 warm up sets at 40%, 60%, 80%.

Workout Days - M,W,F (Rotate Workout 1 and Workout 2 every other time you lift.)



Workout 1: Sets x Reps

3x5 - Squats

3x5 - Dead Lift

3x5 - Overhead Press

Workout 2: Sets x Reps

3x5 - Squats

3x5 - Bench Press

3x5 - Bent Over Row

All Work Outs End With:
3 Planks till failure
3 Sets of Pull Ups till failure

My Stats and Weights (lbs): 5'3", Male, 130lbs

Squats - 145

Dead Lift - 155

Over Head Press - 85

Bench Press - 115

Bent Over Row - 80

Best Sets of Pull Ups - 7/6/5

Best Plank - 3.5 Minutes

This workout routine is from a book called Starting Strength by Mark Rippetoe (slightly modified for personal preference). This is the routine that is mentioned religiously on /r/Fitness.