I've heard of this technique, but haven't tried it. I never knew there was an app to talk you through it. Thanks!
For the lazy: this is the app I found: https://play.google.com/store/apps/details?id=autogenicdrainage.polemics.com.autogenicdrainage&hl=en
Hah, I think my comment has a bit of a Facebook filter to it because I was trying to stay only on the positive, but there are always challenges ;-) But yeah, definitely grateful for the things I've been given.
I actually want to start a small business! Congrats for getting yours off the ground, the more I learn about what it takes the more impressed I am by people who have managed it. Especially if it's because of a recession, like damn that takes some real determination. I agree, a sense of purpose is critical imo; I always think of Frankl's "Man's Search for Meaning" because it really highlights how important that mindset is no matter what your circumstances.
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This is only true if you find pure MCT oil... My understanding is that it usually contains a small portion of long chain triglycerides. For example is still ~4% long chain fats, and so if you are consuming it in any quantity its still best to have an enzyme.
Further, for anyone reading this and thinking coconut oil is all MCTs, you should be aware that normal coconut oil is less than half MCTs, at best, and you should still definitely take enzymes with it. Ditto for avocado.
Adding that line about research made me so mad. Here is the CEO bragging about $2 billion cash on hand. https://www.fool.com/investing/2018/03/15/7-things-vertex-pharmaceuticals-ceo-just-said-that.aspx
Will do! If you're interested you can read more about how the project started here: http://www.indiegogo.com/projects/cfcommunity-net-a-social-network-for-people-with-cystic-fibrosis.
If you go to http://cfcommunity.net you can sign up for our newsletter as well :-)
AUVON iMedassist Monster Weekly Pill Organizer, 2nd Gen Extra Large Pill Box Case (7-Day / 4-Times-A-Day) with Huge Compartments to Hold Plenty of Fish Oils, Vitamins,Supplement and Medication (XL) https://www.amazon.com/dp/B07H2GPP9D/ref=cm_sw_r_cp_api_glt_fabc_Y5N8RBF0B06RQWFQYP1Y
Here’s one on Amazon. I just searched extra large pill organizer and this came up. They have plenty more as well. I checked Boots but they don’t have any that seem even close to being big enough.
I also recommend Full Catastrophe Living
Mindfulness Meditation is a key to living fully in the face on adversity and overwhelming stress.
So you can get a standard brand like Phillips that sells internationally and have them ship from overseas (like this), which is a bit more expensive, or you can do some research ahead of time and find one at a local pharmacy, which is what I did.
Lidl in Ireland no longer sells them, I think (that's where I got mine after the US one fried) but! Looks like Lloyd's pharmacy does. (Here.) Look up some local pharmacies in the country you're visiting, you'll probably find one, assuming similar laws regarding nebs.
Like others said, I recommend using an arm band to slide over the dressing. Without that, the lines hang loose an inch or two and will bounce around when you move.
There are lots of arm bands for runners to hold their phone. One example that isn’t all black: https://www.amazon.com/dp/B092VJ1QK6/
I think one of these is pretty convenient for keeping air compressors and pill boxes etc.
I use a baby bottle sterilizer to disinfect my aerobika and nebulizer mouthpieces, cups, etc. Here’s a lil to thr machine I use to steam sterilize and dry my pieces: Wabi Baby Electric Steam... https://www.amazon.com/dp/B07CTK7X15?ref=ppx_pop_mob_ap_share
Hm.... well, I'm out of ideas, but what works when you're able to temporarily stop your dry cough? From my personal experience, a dry cough sounds more like my sinus drainage than anything else. But it might also be environmental. Is there a moldy smell in your dorm? Do people smoke around you? Try buying an air purifier for that. (Here's a cheap one that I've found isn't too bad: https://jet.com/product/detail/03e24c8f6ad042b98f4d1bc99feb57c3?jcmp=pla:ggl:gen_home_garden_a1:household_appliances_climate_control_appliances_air_purifiers_a1_other:na:PLA_348543900_24223387380_pla-161705581020:na:na:na:2&code=PLA15&gcli...) You can use a cover like an OTC medicine, but discovering what's really going on is going to be the key. You might need a doctor for that, or just find what normally helps it best. You will know the best way to tackle it yourself. You know your body.
Talk with your doctor to try and get something. If Rxs are a problem, then find a local in-state doctor, and put them in contact with your CF center. Pretty much any doctor can prescribe pretty much any Rx, it's just that they hesitate to do so when they don't know something out of their specialty. Additionally, you can use a big chain pharmacy that has branches everywhere in order to get Rxs across the country.
I am currently doing a science fair project in which I deduce which types of factors affect PFT results. Please fill out this survery to help me get data. Thank you!
My boyfriend bought a baby fridge to bring for admissions for his selzer water addiction; keeps drinks cold and is small (can also be used in a car outlet as a cooler or a warmer:D) it was something like this one: https://smile.amazon.com/dp/B076X7HF7F/ref=cm_sw_r_apan_glt_fabc_CBZ630H9S8PZ23PMN6JH?psc=1
I also have multiple food intolerances (due to IBS), so limiting foods that trigger my digestive symptoms has helped me a lot.
For constipation specifically, I take Miralax and a prescription medication called Motegrity. I also recommend using a Vitamin C Buffered Powder supplement. It basically comes in the form of powder and you mix it into some sort of liquid (water is fine), and drink it. It can help with mild constipation, and I figure it gives my immune system an extra boost, so why not?
I wish you the best of luck with this. I’ve struggled with chronic GI problems for years, and it’s never fun. Things aren’t perfect for me, but I at least have gotten to the point where they’re manageable.
Hello there, I am a Year 13 student currently undergoing an EPQ comparing genetic engineering and treatment approaches to cystic fibrosis. I have prepared a survey to gather the opinions of those who have or are parenting someone with cystic fibrosis. I would really appreciate it if you could fill it in and share this survey.
Feel free to contact with any questions or comments.
Link to form
My bf is looking to be tested as well in case we decide on bio kids in the future and surprisingly 23andme offers a sort of genetic test. Whether it’s accurate or not is another thing, obviously a doctors test would be much more accurate, but if you wanted to do a non-doctor route this is an option! 23andme
you may want to read how kalydeco works. i'm not sure if you know how CF works and what kalydeco does to restore normal function. it's not an antibiotic.
So interesting! I think when I say "X" mutation what I mean is Class I/minimal function/no CFTR created?
So maybe it will be good for all of us minimal function folks!
My girl has used them wet. Try to shake off as much water as possible. Can also try using your hair dryer on it.
But I bought an electric steam sterilizer that also dries because it takes so long for neb cups to air dry. Worth every last penny. Check out the Papablic for about $80.
I have this combo under my kid's fitted bedsheet to help with her nightsweats (she has cf, but isn't on Trikafta yet). Depending on how bad it is you might only need one or the other, but I also have the entire mattress cover on my bed since she sometimes wants to sleep in my bed at night.
Mattress pad that goes directly under the person.
Whole mattress cover that is actually super soft and doesn't make noises when rolling around on, but keeps the mattress dry.
I have not experienced the Trikafta night sweats. However, I produce a lot of heat when I sleep and have a long history of night sweats pre-trikafta. I received a set of these sheets as a Christmas gift and they are amazing for cool and comfortable sleep. I haven't produced much during the night since I started using them. I have several sets now.
A friend of mine gave me one of these (color grey though). water bottle fit perfectly if the front most pocket. Bigger than a fanny pack, much smaller than a backpack. Used to be my daily carry when I lived in NYC
I hated using those for baby bottles so I refused for neb cups. This is what I use if you decide to switch
Philips Avent Microwave Steam Sterilizer for Baby Bottles, Pacifiers, Cups and More https://www.amazon.com/dp/B007VBXKG2/ref=cm_sw_r_cp_api_glt_fabc_YK6DZCJXN0KNX1VR73K6?_encoding=UTF8&psc=1
I'm missing two discs in my lower back, so lumbar support was a must. I was going to get a RTX racing chair but after trying one out was surprised how uncomfortable it was . I went instead with an ergonomic office chair; and it's been great. I got skinny legs, a bony butt, and spend the greater part of most days in this chair. It treats me right.
If you are extra sensitive to clothing that rubs on it, you could get a g tube cover belt to help protect it. Amazon carries one that isn't too expensive so if it doesn't work out, it's not a big loss. Wearing a wetsuit that is a bit bigger than you might normally wear may help too.
Lots in this post that others have addressed. I will say get a squatty potty
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?
There's this on amazon:
Weighs around 1.5lbs. It can run plugged in or on a lithium ion battery. It doesn't state a run time but based on the power specs, assuming my calculations are correct, the run time should theoretically be close to 14 hours. How that works out in the real world I cannot say. But you still need to have plan to charge that, expecting it to take a couple hours to charge.
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.
The Mass gainer I use is called Serious Mass (amazon link below). I get the chocolate flavor but I hear the other flavors are good as well.
What's up I have lots of issues but my main ones are cf gastroparesis & chronic vomiting. I struggle a lot. This year has been especially tough, but the last 6.5 years I've thrown up practically everyday and it literally is a full time job taking care of myself now. I used to live a pretty normal life comparatively to my peers but now I it's like another commenter said I get a few days off here and there but it's just a vacation from feeling shitty. I'm just exhausted all the time these days and can't progress on goals I like. It fucking sucks but I haven't given up. I have to meet with my therapist weekly. There's just no way around it. I'm on antidepressants and things and it helps for sure but sometimes shit sucks. That all said I had to find a purpose something to do or achieve so on days I feel good I help in the community because that gives me a sense of fulfillment. That makes it worth it honestly. When I'm in those sick moments especially vomiting or lung pain I definitely get those thoughts of eternal release but it's fleeting. I don't know if I'll get better but I still have to fight. If I'm gonna be real honest I have a core belief that is overly dramatic for sure but i can't help what runs in my mind and that's that "my life is kind of a wash so just try to make everyone else's better. " it's not the healthiest but it gives me drive to go on. Anyways this is kind of rambling cause I feel you. Much love my brother or sister in arms.
P.s. there are a few books that have helped me
Mans Search for Meaning
When Things Fall Apart
Also mediation and yoga have been really helpful
My spouse replaced the Vest^(TM) with a simple bean bag hand weight (similar) many years ago. The way it works is that you simply repeatedly (and not too hard) hit yourself in the chest with the bean bag. Since my spouse can tell where they are feeling spots of consolidate, they can focus there with the weight. Works well and for 0.001% of the cost.
Another suggestion I have is to buy a pill bottle with a timer that shows how long it's been since it was opened. Like this. That way she knows if she's opened it for the latest meal, and she can grab the number of enzymes she thinks she needs for the meal size she is eating.
I got one recently on Amazon, but I guess I wasn't the only one. Looks like it may be sold out now. I'm sorry, I don't know where else you might find it.
I kinda want to get one of those retracting badge holders (like this ) and rig that to hold my neb up. I've used them for holding headphone cords or neb tubes out of the way, but I haven't tried it on the neb itself, so I can't say for sure how well it'll work.
Yes, I've used this one for Android and it seems to work.
Hello Everyone, https://play.google.com/store/apps/details?id=my.triviappfree.liammaguire.triviaapp&hl=en
I am a computer Science student with Cystic Fibrosis and have recently published my first app. It is a Trivia app with hundreds of questions from a wide variety of topics and would greatly appreciate if you gave it a download, It is free for all android devices on the google play store. If it is successful I will also make it for the Apple store as well as introduce more questions and game modes.
For cars, regular nebulizer and this.
I don't have a purely portable nebulizer though.
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.
This is what I use when I am out and about or have to eat a big meal at work. That way you don’t have to carry a big organizer around and you can stay on schedule. I have never had a problem or been questioned about my medications. Many people need to take meds when they eat. This container is discrete and could fit in your pocket.
AUVON iMedassist Portable Daily Pill Organizer
Perhaps you should get a pulse ox, amazon sells decent ones. You can take it to clinic and compare it against theirs to make sure it’s reliable. And then you can periodically check yourself during exercise to make sure you’re above 90%.
If you are dropping an inhaler or any amount of vitamins aren’t going to help that. But at least if you have your own pulse ox you can keep a little log and then feel more confident if/when you do tell them you need retested. Like if you see yourself dropping into the 80s. Also pay attention to how long it takes for your oxygen to recover above 90% when you stop the activity.
Here’s the pulse ox I bought. It’s been very reliable for me, I take it to clinic to compare.
Concord Pink Fingertip Pulse Oximeter with Reversible Display, Carrying Case and Lanyard https://www.amazon.com/dp/B0101BGUJM/ref=cm_sw_r_cp_api_i_YHmOCbV5V8X81
And here’s the portable concentrator:
Luxe Bidet Neo 320 - Self Cleaning Dual Nozzle - Hot and Cold Water Non-Electric Mechanical Bidet Toilet Attachment (white and white) https://www.amazon.com/dp/B00JG3NVG2/ref=cm_sw_r_cp_apa_i_IBDDCbY0V291V
I've found this small machine which looks really good for vr and a perfect size for make it portable for use in hospital.
It's an Intel NUC 8i7HVK from these guys in the UK . They gave me a discount.
It's still pricey but for a small machine I'll take it .
You can pair it with one of these
Acer Mr Headset https://www.amazon.co.uk/dp/B075PVLN2P/ref=cm_sw_r_cp_apa_i_-tkoCbZRJWK0Y
And you have a small portable vr solution.
Just check the pricing . Before Christmas the Acer wmr headset was £175
But anyway it's worth looking into if anyone has the money and is interested in a small vr machine which they can take into hospital.
I have this one and it fits 12 cups AND dries them. It. Is. The. Shit.
Papablic Baby Bottle Electric Steam Sterilizer and Dryer https://www.amazon.com/dp/B074M5XZTS/ref=cm_sw_r_cp_api_89N3Bb4NCFWMB
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.
My doc gives me scripts for sterile saline, so i don’t have to make it. I pick it up at my pharmacy, three bottles per refill. They are to be stored at room temperature so i date them when i open them, and use them up in 3 days time. The syringe I have is this one. I replace it every six months. I really like this one I’ve reordered it probably 5-6 times.
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.
I bought this about 6 months ago, and its been awesome. Finally got sick of stacking all those pillows.
I also do some vicks vapor rub every night, which seems to help me breath better.
I agree with /u/cbeaus and the spoon theory. Also, there's a book on Amazon called Can't Eat, Can't Breathe, and Other Ways Cystic Fibrosis has Fucked Me" By Jay Gironimi. It's not a uplifting tale of a brave hero, it gives the realities of our life with some dark humor.
I have tried a lot of ways to get extra calories, over eating, weight gain supplements, everything you can think of. My stomach is and has always been extremely sensitive, I can easily say it's the part of my cf that has always physically bothered me the most. Out of all the many many things I have tried to gain weight (see: all of them) this weight gain powder has been wonderful for me. Barely thicker then water and thinner then milk if mixed with water, delicious taste, 750 calories just from the powder and water. I have found great results using coconut milk instead of milk or water for the extra calories. Milk kills me makes me feel terrible. I literally sometimes drink 3 of these a day, no bloated feelings, no stomach pains, no gas, and it isn't even that filling. I will often drink one with meals. I've never found anything that has worked for me until this, I can't say enough nice things about it.
Overall the best of all apps I tried. Only reason I didn't keep it is that sync didn't work reliably. I'm now trying Carezone which so far meets all my requirements.