CF MEDICATIONS Q&A | What do they do?

[@thefreylife]

You guys have great questions! Thanks for being on this crazy journey with us. And thanks for being fellow medical nerds ;)

[@olingecko]

It would be like the Function of Beauty shampoo... function of medical supplies.

[@olingecko]

May be too much of a personal question, but does CF impact your options for birth control?

[@jonki1980]

100% 👍👍. Mary and Peter. Thank you from a self certified medical nerd

[@lindas4004]

That powder pill reminds me of Ventolin many, many years ago before the current inhalers were invented. You used to do the same - pop the capsule in, twist the lid on and breathe in and it would 'whirr' like a fan.... absolutely awful and if you didn't have the mouth piece angled correctly, it would end up on your tongue Ugggh x

[@sasham6486]

love being a medical nerd

[@caitlyn7343]

I love how you phrased it about medication allows you to have freedom. I take a lot of medications for various ailments, none super serious but troublesome nonetheless and many people, probably trying to help, question the amount of medication I’m on or the fact that I’m on medications. But they allow me to function and have a quality of life.

[@PowerfullyPowerless]

Reminder to self: the frey life may be hazardous when eating rice and watching. I wasn't expecting to laugh that hard watching a video on meds lol

[@eob4228]

the medical nerd in me is LOVING this. i wrote a section of a biochemistry paper on trikafta, this is awesome!!

[@whenlifechanges]

I love your educational videos. I’m a paramedic instructor. We covered chronic patients and common devices that they use. I let them watch your feeding tube and port access videos. Thank you for educating the public!!!

[@karenstraily4115]

Love the idea of being able to customize the shape and color of meds!!!

[@debraconrad1904]

I was wondering what the CF doctors are advising patients regarding the Covid vaccine.

[@melissakoon2097]

I have an immune disorder and I just talked to my Dr about this and she would rather me take the shots even though it probably will only help me 30-40% effective its better then nothing ♡♡ so as soon as they start giving it to our category of people I will be taking it

[@lauraslife8608]

Hiii I’m 18 and I also have cf, I love watching your videos you make me so happy but also are so informative ❤️ love laura 🥰

[@hollyosgerby1901]

Great video! Totally satisfied the “medical nerd” in me. Thank you Mary & Peter! 🤗❤️❤️🙏🏼😘🐕🐱

[@tabbylynn4130]

You guys crack me up sooo much!!!! I admire you both and your marriage so very much!!!!

[@blairmarie9872]

I love the Q&As. Also love seeing you guys laughing so much!

[@valeriecunningham1574]

Hi Mary and Peter. All of the descriptions of your various medications and what they do for your body was very well done. I take various vitamins and minerals to help my body after I completed my cancer treatments. I also take Ursodiol for my liver because I have an auto-immune liver disease called primary biliary cholangitis. It helps quite a bit for my situation. Good luck to you both in the new year. I appreciate all of your work that you do on this vlog. Take care.

[@TeenDream888]

there's a lot of people who can't take the generic, as the formula tends to change a lot, and they contain dyes and fillers. my issue is that the generic is covered by insurance, and the brand names usually aren't.

[@patriciaconstantino4669]

Enjoy these Q & As so much!! Very helpful and informative👍 You guys keep me smiling.. and also laughing at times.. lol... your “pancreass”... 😂 gotta have a sense of humor especially during these tough times ... thank you Peter and Mary for sharing your journey with us ♥️♥️

[@huntsmanpixie2951]

Such brave hearts that know the value of the blessed gift Our Father has imparted. Thank you for being you (you two!)

[@taliailana]

I think that's the first 'bad' word I've ever heard Peter say!!!

[@TechGirl84]

I laughed so hard at the “pancreass” bit! I always love it when Mary says “Peter!!!” 😂

[@Asincitygirl]

You are the champ! I do not know how you can keep track of all that! I have 5 and sometimes it is confusing. I would have less if insurance wasn't such a pain. After 1 insurance change (not my choice) they would not cover a medication that was a combination of an over the counter drug and a prescription drug. Fortunately I was able to get my doctor to prescribe one part and get the second one over the counter. But now years later they don't seem to like the prescription part and I am cutting back on that while looking for another option.

[@janineschindler2966]

Very interesting..thanks for sharing

[@rosemarieherman7790]

I am on quite a few meds and I am amazed that you are able to recall meds from years ago. And Peter, you know them all as well as Mary does. My husband has been taking care of me for 40 years, so Mary, I recognize how truly blessed you are to have a wonderful, dedicated husband who loves you so much. I pray that God will continue to bless you both with health and happiness. ❤️🌹

[@kokopuppy57342]

i'm so glad the injection is working! it took me about 5 months to get full results (though I was started on too low a dose so that was part of it) I'm so glad it has been working so quickly! Please try the arm trick though it's seriously so much less painful to do it back there and I would love to see you have less migraines as well as a not so painful injection :)

[@disneyfunatic3179]

my pancreas was an ass so I evicted it! too funny Mary and Peter! oh, i would be excited to pick the color of my pills as well! 18 Zenpep a day in the same color is just not exciting!

[@julieankin8427]

Thank you for posting this video, it is interesting to hear about the medications that you take Mary and you explain very well what effect CF has on the whole of your body. I live in the UK we have our NHS ( National Health Service) so getting medications is very different to your system in the US, your insurance system sounds very complicated and very challenging indeed, take care and keep safe XX

[@Lucia-yc9zj]

I studied to be a pharm tech, but had to stop my classes because major life events happened, so if I’m wrong, please correct me! From what I studied, when it comes to medication, there is absolutely no difference between generic and brand name. The generic is cheaper because they did not have the original patent. But that’s not necessarily the case with other stuff like food. Only medications

[@BGing_Foodie]

I looked this up a few years back because the pharmacy kept changing the manufacturer of my antidepressant, and I would have new side effects for a few weeks after switching. At least some, if not all, of the pharmacokinetics (AUC (area under the curve), peak concentration, half-life, etc) need to be within ±10% of the brand name drug (for the US/FDA). For most people and drugs, switching between brand name and generics is not an issue. However, for some meds in which blood levels need to be in a narrow range, or more sensitive people, there can be a difference switching from a generic that's 90% of the brand name to 110% of the brand name. I also want to stress to others that all pills have fillers, not just the generics. Fillers are necessary to ensure a tablet won't fall apart, coatings to prevent degradation in the stomach acid if it needs to be absorbed in the small intestine, and combination of both/either if the release rate needs to be altered. Yes, the fillers might vary, but as far as I know, the fillers in the brand name are not inherently better. Some generic food is actually the same as the brand name, just in different packaging due to "private labeling."

[@disneyfunatic3179]

no life for me without my Zenpep! it truly is my lifeline!

[@bnezri4290]

whoooh your videos are so interesting even on a boring day,and those Q&A are my favourite i love them they are so enlightening!!!!!keep going your doing a great job!!!

[@catloverKD]

The prescription vitamin K was really recent, when you started having more severe platelet issues from IV's and more lung bleeds.

[@bethbupp5021]

What great information there’s a lot goes into medical medications that people don’t realize with certain health issues thank you guys. God Bless

[@rae1957tn]

Thank you I’ve been really down but you 2 made me laugh

[@rebeccaclavette2329]

Thanks for laugh! Really needed it today..❤️🤛🏻

[@cindygambrel9267]

I needed a good laugh Mary and Peter! 🤣 Thanks!

[@kathyrizzi8754]

I take esomeprazole 40 mg. for my acid reflux problem, it’s comparable to Nexium, the other ones didn’t work as well. 🥰🌺🌹

[@penelopepolinsneemeyer4757]

Hi guys! Over here in the U.K., doctors are encouraged to always prescribe the generic form of a medication as it’s cheaper for the NHS. It does make taking something regular entertaining as the packaging and tablet colours can be different every month! That’s why I always store mine alphabetically according to their generic name and use an app called Pillboxie to help me keep track of what to take and when. Sending you our love! xxxxxxxxxxxxxx

[@caitlyn7343]

So where I live, if you have health insurance you pay your 20% up until a certain amount then pharmacare kicks in and the government covers the rest until the year rests at the end of March. I love hitting that amount, saves me so much money. But my medications tend to be mostly generic when I’m on pharmacare. When insurance and I pay, it ebbs between what they have in stock.

[@tracydownie169]

You guys make me laugh! Thank you x

[@callabeth258]

As a pharmacist from Australia I can say that the only condition where generics are not ok is epilepsy. The standard to which all generics are made is of the highest quality and often more consistent in quality and dosing than the originator brands. Generic brands are only allowed on the market when the originator comes off patent which the standard timeframe is 20 years. So trikafta won't be available to get a generic for another 19ish years. Also like Mary and Peter said for some of the specific disease drugs because it's a narrow market a generic isn't always made.

[@olingecko]

Love your shirt, Mary! Duluth is one of my favorites!

[@hollya6768]

If you had been on trikafta while in MA, would you have still moved to N.C.? Curious.

[@trishaanderson3001]

Does following any specific diet help? Non CF here but am type 1.5 diabetic so I know what having a useless pancreas is like.... I love how positive you both always are....

[@stephwashere4454]

Howdy back! Love these Q & A's ♥️

[@thefreylife]

So glad you enjoy this format of video!

[@elainehardy3502]

Mary , is there any reason how you and your sister both were born with CF ? Does your insurance pay for Vitamin D ? Mine won't and I have to take 50,000 IU per week. I have to pay out of pocket. Is CF not considered a disability and you could get medicare or Medicaid?

[@elizabethann5308]

CF is genetic and both of her parents are carriers of CF. That means that each person who is affected by CF has 2 copies of the gene. You can have 1 copy of the gene and not be affected by it. Then you are a Carrier.

[@elainehardy3502]

@@elizabethann5308 It's strange how genetics work. Her parents are carriers but they don't have CF . My half sister has a genetic mutation that has to do with having children. Genetic specialist said both patents would have to be carriers.

[@BGing_Foodie]

@@elainehardy3502 Some disorders require 2 faulty copies of the gene (recessive) because just having 1 good copy is good enough and you can get by. Other disorders (dominant) show up with only 1 faulty copy because the body really needs 2 good copies to get by.

[@hannahbanana32]

I don’t personally have CF but thanks to Mary I would consider myself adequately educated about Cystic Fibrosis 😉And now I’ve been able help educate others about it too! 💜💜

[@sophiehoglo]

🤣 I almost choked on my water with the pancreass talk

[@yvettepritchard3983]

I am so happy for you mery looking back at your other video and seeing how miserable you where or doing antibiotics all time or living in the hospital . I am happy for you . Does your sister take as much med as you do still since her lung transplant just wondering .

[@sophiecarter1812]

You can sometimes ask the pharmacist for a certain kind of medication, we have to do it with my dad because there are two versions of one of his meds, one works and one doesn't. It could be worth an ask, if it is something available like the type of capsule, they may be able to help ya out.

[@blairmarie9872]

I was also on ultrase until the discontinued then went to zenpep

[@bookworm1326]

Mary if you haven't been using your feeding tube lately do you still have to change the button?

[@jtrujillo1985]

Good topic, we covered this in pharmacy school. ..i think it all comes down to preference but, sometimes doc thinks he or she knows best. Thats not always the case, as we all know im shure! Sort of like, some prefer gel capsules over tablets🤷‍♀️

[@kareninva7097]

Some Inhalers has the pill you put in it but I did not feel like I was getting enough of it

[@carolynk.9856]

I remember that your team lowered your dose of Ursodiol, have you or your team noticed a difference since that change? Also I thought the vitamin k was for your spleen but you said it was for your liver. Do you take or do anything for your enlarged spleen? I’ve said it before but I love when you do these medical vlogs, so interesting!

[@haleyphipps0417]

We're so alike with our CF lives Mary.😁❤We both take Tricafta, HTS7%,Pulmozyme, acid reflex medication, multivitamin ADEK (chewable though since I can't handle pill form and they are MVW Complete formula brand),and iron supplement. But on the other hand we are different too. I do Cayston with no off months,I take Creon 24,000 lipase enzymes, Proair inhaler only, Advair diskus (100/50) and I have to take extra Vitamin D 5,000iu because even though I live in sunny Colorado, I don't get enough Vitamin D from the sun. Plus I don't have migraines or CF related diabetes either and I am not skinny,I'm a plus size girl of 185 lbs. and I eat a LOT and regularly too and have to take 15-20+ grams of fat with my breakfast and dinner since if I don't do that with my Tricafta, I do get GI symptoms really bad. So you and I are different and its not because we are 10 years apart either. All CF patients are different in their health issues. Have a great day. Love watching you guys. You are my CF buddy that I look up to Mary everyday. Maybe someday we will meet somewhere,but for sure in Heaven someday. 😁💒❤ Thanks for this informal video. Haley P.,age 21 1/2 from Thornton, CO

[@kerivandenbosch3375]

Very Informative video today guys thanks

[@jonki1980]

Brilliant Q&A again. In the UK - majority of specialist drugs are noted - issue as prescribed - so the doctor or GP have said only those can be issued - for clear reasons. In the UK I'll give one example : Tylenol {paracetamol in the UK) - there are several versions - in the UK (and Europe) look out for the PL code (Product licence number) on the box, not sure if there is something similar in the USA - if the PL numbers match, go for the cheaper version because they have the EXACT same ingredients - if you pay more, you are only paying for the brand name This can go for allergy meds and other general meds. Vlog recap 🎥🌄,💊❓🅰️2️⃣🌌👋

[@curtisbemis6640]

Love this channel the pod cast you guys are awesome people🙏🙏🙏🏆🏆🏆

[@anneparent-trujillo3608]

One of my hubbys meds was backorder for a month that was a pain

[@jobspeakcrochet]

Hey Mary how is your Iron, and iodine I need both with no Thyroid I was born without it as a cf patient.

[@chronicallymadison2214]

@thefreylife I have never laughed so hard at one of your vlogs this was so entertaining lol😂😂😂😅😅😅🤣🤣🤣

[@Avariel75]

Your Powdered pill reminds me of when I was on Tobi Podhalers. It was meant to be a way of getting Tobi into me without having to sit through a 4th masking during my morning/evening regiments. But when it crushes the med and you inhale that powder, it was so terrible that I'd rather sit through the tobi masking.

[@sevannautesch4104]

I'm currently on hypertonic saline

[@sunny4jenny]

Yeeeeees! Same thing with my prescription magnesium~ I can’t swallow the powdery ones and always request the shiny slippery smoother pills👍

[@mdfoster74]

Yay! First one to like! God bless you both! ❤😇

[@sunny4jenny]

I’ve forgotten meds on vacations a few times... depending on the med & pharmacy, they’ll give you a few pills of the med you’ve forgotten

[@l.kibben4416]

Ugh I did the inhaled antibiotic pill for a while, that was BRUTAL!

[@MsBrat1967]

I love this information. I hate when my pills chalk up on me.

[@lindastratton126]

Mary how many meds are you taking a day?

[@crpssurvivor]

I have to sometimes “Demand the Brand” due to fillers? yet Trintellix my anti depressant from chronic pain has no generic and costs a fortune.😔

[@ellenlarsson8670]

Do you juse the monarch vest?

[@blairmarie9872]

What was the myphton you got on Amazon I am also having trouble with the insurance and getting mine

[@thefreylife]

Here's the link to them - and definitely check with your medical team about dosage (as the strength is different than mephyton) amzn.to/369OZVZ

[@blairmarie9872]

@@thefreylife thank you very much I appreciate it and I definitely will!!! Sending love

[@Sweet2-y7d]

I have a question so you are not doing the Toby pod right because that is a dry antibiotic that you inhale into your lungs which my son has been doing for years and he's been doing the 7% pulmozyme Albuterol a generic disc I can't remember what that one's named it's purple and the Trikafta which we absolutely are so happy with enzymes he does another pill at night I forgot the name of that it's kind of a square pal color he is on lots of other meds for other things so that's basically it for his routine as far as his CF goes

[@Judymontel]

You guys made me laugh so hard over those enzymes... THANK you!!

[@KERose307]

Generic is just as good and cheaper.

[@tabbylynn4130]

Yay!!!!! Fellow Medical nerd here lol

[@melissakoon2097]

I think I'm going to ask my Dr. If I can try a pancreas enzyme I have something going on with stumic and they can't figure it out and they don't want to do surgery on me but im so tired of having these episodes of pain and can't eat and barely eat during episodes

[@susanmargaretwills6432]

Hi ~ PURPLE pills? Back in the 60's (UK) doctors prescribed "purple hearts" for depression - none other than LSD! Little was known about dependancy...

[@amybailey2812]

Mary and Peter CF medicine ted talk

[@MyDreamIsAStory]

I had to inhale a pill. This was back when I had jaw surgery my nausea pill had to be inhaled. Luckily I didn’t need to take it, but a few times. At the end of my time with my jaw being wired shut I also got a stomach virus. So I had a medication that had to be inhaled. That was not fun.

[@beverlysettle1084]

Peter!!!! LOLOLOL so funny!!!😂

[@VulcanOnWheels]

5:55 I would not be surprised if that is possible, nowadays.

[@nathantatosian280]

Hi Mary and peter

[@juliakern9226]

I enjoy medical stuff

[@vettechmom3414]

Oh the color of pills! I worked as a pharmacy technician at my last veterinary hospital and I can’t remember which medication it was, but there was some pill that was the ugliest dark olive green color and they were the ugliest things ever... and they were huuuuge. We used to joke around and say we would hate to have our pet take these pills because they’re so ugly LOL. Our favorite pills were for hyperthyroid cats, because the pills were super tiny and hot pink LOL - they looked like candy. I would also love to colorcode my own pills .... AND to have them all glossy!!

[@BNHAalltheway]

Interesting to know about the pills You take and You take so many wow You're amazing You can take so many at once

[@jessicadehaan566]

My little brother past away october 24th 2016 he had CF😥 He was just a month 25 years old. But how are you holding up with al the covid? Me and my moms were telling that it is weird to say but we are happh that my brother is not here anymore because they had to life in a bubble and we could not go to work or anything. But how are youre CF doctors with the covid vacine? Can you get it?

[@maddybrong]

I believe famotidine if the off brand if pepcid :)! I'm on it too lol

[@Joy.Elizabeth]

4:19 🤣🤣🤣 lmbo too funny! I really needed the laugh too so thank u guys for sharing ur infectious laughter n positive attitudes!! Always praying for u guys! N im def a medical nerd too so this was a great video. 👍🏼👍🏼

[@kaylabarnes]

Poll: capsules or tablets?

[@heidiandbellatheservicepup3359]

Hi Mary how are you doing hope well

[@pattyfluegel7816]

haha! Marys "Pancre-ass" lol

[@green_willowtree]

I can’t. 🤣🤣🤣🤣

[@kerivandenbosch3375]

And also very funny

[@a_n_n_a5755]

Day 7

[@kayteegrace8283]

PETER!!😂🤣😂🤣

[@lisatowan4536]

Have you ever had to use Mucomyst? 🤢

[@elainehardy3502]

🤣🤣🤣🤣 pancreasssssssss

[@johnsonfamilyvidsvlogs3745]

PancreASS 🤣😂🤣

[@eej1983able]

Pancreassssas lolol like mass assss