ON TRIKAFTA - DO I STILL NEED OTHER MEDICATIONS?

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The Frey Life

The Frey Life

Күн бұрын

MEDICATION Q&A - How my routine has changed through the years!
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Welcome to The Frey Life daily vlogs! We are Peter & Mary, a married couple in our early 30's, showing the ups and downs of everyday life with #CysticFibrosis, a life-threatening lung disease that Mary was born with. We have an adorable standard poodle, Oliver, and a hairless sphynx cat, Harry. It's our hope that these videos can be an encouragement to to celebrate the little things in life and find joy amidst a world full of hard realities!
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Пікірлер: 194
@thefreylife
@thefreylife 3 жыл бұрын
What meds does my body need? Any different ones now that I’ve been on Trikafta??? Here are some answers to your questions!
@amandagray9871
@amandagray9871 3 жыл бұрын
Do you still use your nebulizer?
@carolynkennedy1083
@carolynkennedy1083 3 жыл бұрын
Use a CABOODLE! For the little meds/supply tray!
@eej1983able
@eej1983able 3 жыл бұрын
How many are in your hand at one time pill wise?
@celticphoenix2579
@celticphoenix2579 3 жыл бұрын
And I thought I was weird for having all my meds arranged in an old icecream tub on my desk where I have my morning coffee. I still forget to use my inhaler though. It's a work in progress. Thank you for showing me that I'm not weird 🙂. Also thank you for introducing me to comblers. I have now converted the husband to using one as well. And he loves the word 😁
@kadeline1
@kadeline1 3 жыл бұрын
Ideas.... *A cheap toolbox with a removable tray was what I once used to corral my meds. Because I change meds frequently, I also have a fabric tool bag. **Medicines need to be locked up; from kids sure, but also from grown-ups! You haven't lived until you tell a pharmacist, "I think someone stole my meds!" ***Now-a-days, I use CVS Pharmacy's multi-dose package; on their website, select "Pharmacy" and scroll down to the blue bar mid-page to find out more. Amazon's Pill Pack is the same idea. ****There's a pharmacy in my town that will assemble meds in blister packs at a low cost, maybe yours does too. That's all, have a happy day!
@davegoodridge8352
@davegoodridge8352 3 жыл бұрын
Mary, it’s got to be so meaningful to have Peter there as reinforcement when you need it.
@authorgirl4350
@authorgirl4350 3 жыл бұрын
Peter: I'm trying not to cough! All of us: On this channel? Why? Get it out, dude! We're here for it!
@clh90210
@clh90210 3 жыл бұрын
I thought the exact same thing
@imogenoliver
@imogenoliver 3 жыл бұрын
Absolutely
@kirstenornelas881
@kirstenornelas881 3 жыл бұрын
Lol totally me in the store the other day but I have dysphagia and randomly choke on my own spit and I'm in the line and trying so hard to not die and not cough and freak out all the older ppl behind me.. I'm so pale i am sure I was about three shades of blue and purple by the end of getting my groceries paid for 😆.
@reneecauller698
@reneecauller698 3 жыл бұрын
Peter knowing all of Mary's meds is amazing. Such a good, attentive partner.
@apohlson1
@apohlson1 3 жыл бұрын
Peter is amazing! He is a gem! When I see him on hold helping you with insurance issues it makes me so happy for you. I know first hand how hard it is to have to do everything yourself when you have chronic health issues. Wish My husband was like him.
@steendful
@steendful 3 жыл бұрын
Thanks. As aun"T" to my neice who lives with CF, I like hearing about the meds, especially since Canada just recently approved Trikafta for review, now it's the waiting game. Trikafta is the Biggest medical advancement in CF's history, it should be more readily available to CF patients. ❤️🙏
@Trekkifulshay
@Trekkifulshay 3 жыл бұрын
I began looking for information when my daughter's newborn screen popped for CF and now I have a kid with CF so I like hearing the medical details.
@catloverKD
@catloverKD 3 жыл бұрын
Living with it is nothing like it used to be. I don't have it, but I follow a lot of people who do because medical nerd. Some of them don't do any lung-related meds or treatments anymore unless they get sick and their PFT's are still crazy high.
@jacquicoder7160
@jacquicoder7160 3 жыл бұрын
As I'm watching this video, I noticed that the next video to come up in my recommendations is "Three Weeks on Vertex and I'm Speechless!". How well I remember crying as I watched that video back then. I'm so thankful, as are probably everyone of your subscribers that, almost 18 months later, you continue to reap the amazing benefits of that miraculous drug.
@pjmcgovern2277
@pjmcgovern2277 3 жыл бұрын
You can see it in your cheeks n lips your skin is back to how you looked after you returned to the states - you look healthier , I’m so glad so very happy
@karenwood9593
@karenwood9593 3 жыл бұрын
You are doing such an excellent service to new Cf patients and their families. Thank you.
@deniselovelace3075
@deniselovelace3075 3 жыл бұрын
So impressed with Peter’s knowledge of Mary’s meds! So great of Mary to appreciate it as well! Love you both!
@bionicprincess8008
@bionicprincess8008 3 жыл бұрын
Mary.... as you know, Trikafta is a miracle. It is such a joy to see how well you are doing. What a blessing 🙏🏻💗
@signeannsutton2549
@signeannsutton2549 3 жыл бұрын
I take a lot of meds myself for my chronic health conditions and have a difficulty every morning! But, God keeps me going strong. Will turn 62 on February 18, 2021. Blessings to everyone living in the Frey household!😇👣
@aveonsay
@aveonsay 3 жыл бұрын
I’m in college majoring in nursing and I love you guys videos. They are always so positive and informational. Love you all❤️
@Chronically.sarahdayton
@Chronically.sarahdayton 3 жыл бұрын
Thank you for motivating me to refill my meds tonight!! I really didn’t want to, and was going to push it off until tomorrow morning, but it makes me realize how incredible it is that each of my (26) medications help to improve my quality of life. I really appreciate you two bring that back into focus for me, so thank you!!
@liamodonovan6610
@liamodonovan6610 3 жыл бұрын
Hope you two are doing well awesome video congrats on being 10 years married love you both
@ay2431
@ay2431 3 жыл бұрын
I didn't manage to watch your vlogs as I wasn't well for the past six months or so and it feels so so good to be back. I've missed seeing y'all so much and I'm so glad to be able to watch this. I, too, am a massive medical nerd:)
@imogenoliver
@imogenoliver 3 жыл бұрын
Hope you keep feeling better ☺️.
@kathyrizzi8754
@kathyrizzi8754 3 жыл бұрын
Prilosec didn’t work for my Reflux, Nexium and Esomeprazole works the best. I’ve had esophagitis and it was awful, but after changing my stomach drug, it’s working fine. I’m so glad you got your Trikafta after having a hard time with your insurance. 🥰🌺🌹♥️🐾🐾🦮🐾🐾🐈‍⬛
@alli_went_bonkers
@alli_went_bonkers 3 жыл бұрын
I am truly impressed with your familiarity with Mary’s med protocol, Peter. I don’t think anyone unrelated to me has ever known the effects specific meds or lack thereof has on me!
@christytubbs3266
@christytubbs3266 3 жыл бұрын
Ooh ooh I got an idea! You should get white comblers and paint the and sell in your store
@sharonpinkerton8297
@sharonpinkerton8297 3 жыл бұрын
I am happy you are doing well with trikafta
@brittneyclagett2689
@brittneyclagett2689 3 жыл бұрын
I've been on trikafta for almost 8 months now and I have a new appointment soon to find out how much its helped my body out even more 😁 I love watching your videos and seeing how everything is going for you guys 😁💙
@trina7274
@trina7274 3 жыл бұрын
Watching now..... I just want to say, I couldn’t be more pleased/happy at how amazing you are doing Mary!!! Just an absolute miracle!! ❤️💕🙏 Peter!!! Your cough is giving me anxiety hahahaha 🤪 it’s funny how our world has changed over even a simple allergy throat tickle.... someone clears their throat or coughs and everyone is like 😳😬😷 I love hearing about your medication routine! I’m so proud of how well you take care of your health care Mary!! Life is an absolute gift! Just being here is like winning the lottery!! Sometimes we all forget that in our daily life struggles I think!! As always, much love to you both from Oregon 🌲❤️💕🙏
@hollyosgerby1901
@hollyosgerby1901 3 жыл бұрын
It is fascinating, Peter. An interesting and informative video, Mary. Even though I am definitely a “medical nerd”, I didn’t realize just how little I knew about CF until I started watching your vlogs a couple of years ago. Thank you for sharing. Prayers that you will feel better, Peter. Take care and God bless 🤗❤️❤️🙏🏼😘🐕🐱
@emilyjung530
@emilyjung530 3 жыл бұрын
Peter - you should make her a toolbasket type thing for all her meds
@faithandautism-myjourney264
@faithandautism-myjourney264 3 жыл бұрын
I would love a video on your lung treatments and how they have changed over your life. I am an asthmatic and had a good friend I would often see in the children's hospital where I live who had CF. Unfortunately one admission she never went home from the hospital and I was devastated.
@elizabethann5308
@elizabethann5308 3 жыл бұрын
I have been taking omeprazole for a year now. It has been life changing for me. I cannot imagine having to go off of it. I DO NOT miss a dose anymore. I am down for the count so sick without it.
@vettechmom6056
@vettechmom6056 3 жыл бұрын
Isn't it kind of funny how whenever we cough, etc., we always have to point out "I don't have the Rona !!" LOL, that totally made me laugh cuz I have asthma and cough all the time and I get lots of looks from people. I also love that your Christmas tree is still up ... so is mine :-)
@user-vm5ud4xw6n
@user-vm5ud4xw6n 3 жыл бұрын
I have a connective tissue disease which was discovered around 2005, high blood pressure and a gal problem I won’t go into. I take meds twice a day, use a combler (pill organizer but combler is better) and have all my big med containers in a pretty big craft organizer. I get meds 90 days at a time. I feel the same way you do Mary, some days I want to throw my pills across the room. Except...Lyrica, BP meds, Prilosec, Plaquenil, etc. When I’m feeling a bit rebellious I take my meds a a little later. Except my pain meds. It helps to remember what you said one time. “It’s my job to take the best care of this body I can.” It also helps to remember that with this disease I could be a lot sicker than I am. And I don’t have lung cancer like my husband! God bless, thank you for your videos even though I know sometimes you don’t feel like making them. Those are the ones that mean the most!!
@kerivandenbosch3375
@kerivandenbosch3375 3 жыл бұрын
Thank you for sharing all of this information Mary & Peter!🤟🏻
@UNITEDWEFALLthemovie
@UNITEDWEFALLthemovie 5 ай бұрын
Thank you!!!!🙏
@ygp1859
@ygp1859 3 жыл бұрын
This is literally the cutest video I love how candid it is!
@Jlynne3323
@Jlynne3323 3 жыл бұрын
Total medical nerd, totally here for all the medical related Q&As! I always compare it to my own routine/supplies/medications etc. lol (I have Elhers Danlos and MG, not CF...but a fellow medical warrior is a welcomed comfort, inspiration and resource)!
@evekful
@evekful 3 жыл бұрын
I have 3 cats and i can’t have any medications near them . How have Ollie and Harry been with your medications? Do you have any stories or advice?
@sasham6486
@sasham6486 3 жыл бұрын
I love learning more and more about cf
@533134
@533134 3 жыл бұрын
I started taking omperazole for acid reflux. I want to be off of it! I’m hoping that next wean is effective! I love these types of videos! I’m a nurse and medical nerd at heart. Next topic: vest, inhalers, IVIG?
@rae1957tn
@rae1957tn 3 жыл бұрын
Peter is very good all husbands should be like him . I know his mom is very proud of him.
@amandagray9871
@amandagray9871 3 жыл бұрын
I am definitely a medical nerd! And I just filled my combler. I have Lupus, not CF.
@jessortega88
@jessortega88 3 жыл бұрын
Same here, but my complications are with my lungs as opposed to the kidneys which is most common
@susanharris1285
@susanharris1285 3 жыл бұрын
I have learned so much about CF while following you all, love the family💞
@sasham6486
@sasham6486 3 жыл бұрын
same
@OgramRavot21
@OgramRavot21 Жыл бұрын
I was on Omeprazole 40mg once a day for to protect my stomach (says my doctor at the time) and was on it 3 to 5 years and stopped it and I had to go through the worst heartburn ever, but I finally stopped it completely on the 3rd try because I heard long term can cause kidney disease. I had a blood test done in 2017 and my kidneys were fine. But I went to my doctor Monday March 13th 2023 and he told me that I have Kidney disease which was shocking! I wish you didn't have to take omeprazole and I hope you don't end up with kidney disease on top of all you have now. I care about you and Peter and your beautiful son. Ollie boy and Harry and the rest of your family. Just want the best for you. 😢💜
@kathybagley2058
@kathybagley2058 3 жыл бұрын
Mary you look very beautiful I love that color on you your jacket I love love love it it is a really pretty color on you I'm glad you got all the insurance thing I'll take care of. I always love seeing both of your beautiful smiles and how happy merry always is and she has a beautiful voice for singing God bless both of you and your beautiful family and those beautiful cute😇 little animals God bless stay safe😇🙏🐾🐾🐾🐾🐾🐾🐾🐾💚💙❤😾
@rockycat88
@rockycat88 3 жыл бұрын
I use a basket to for my medical supplies. It's easy to carry, and light enough for me to handle.
@XravensunsetX
@XravensunsetX 3 жыл бұрын
I'm kind of a medical nerd as well.... I have Tetralogy of Fallot and Sick Sinus Syndrome (congenital heart defect and issues with my heart rhythm) and I take 8 different meds at the moment- twice a day!
@MsBrat1967
@MsBrat1967 3 жыл бұрын
I have Cerebral Palsy and have to take many meds. Thank you for sharing.
@AshLeyMarie-ml1ku
@AshLeyMarie-ml1ku 3 жыл бұрын
My daughter (she was diagnosed with silent reflux at 3 years old she has asthma and was chronically sick before the diagnoses) been taking omperazole for 10 years now she says the same thing its one med she doesn't want to forget. Her pulmonologist just took her off arthmycin and he said if her reflux gets worse to let him know because in studies its been shown to help GI issues like GERD.
@penelopepolinsneemeyer4757
@penelopepolinsneemeyer4757 3 жыл бұрын
Thank you for sharing this Mary. It’s really fascinating xxxxxxxxx
@lindseymurphey9410
@lindseymurphey9410 3 жыл бұрын
I enjoyed this perspective. I am a medical nerd as well. I’ve been in the medical world for as long as I can remember. I had a liver transplant when I was 6. My meds have pretty much stayed constant since then tho as I get older some things get added to combat side effects of the transplant drugs. I would have to say when I skip my transplant drugs or delay my doses it kinda disorients me a little bit. It’s definitely better now than what it used to be. Drugs like prednisone can be harmful long term and what we have now ( I was in final trials for Prograf a now standard transplant drug) carries less side effects, is easier to dose and carries less risks for opportunistic infections. It’s important when they start messing with the immune system that they don’t damage it too much so you can stay well but not lose very important organs in your body like lungs and livers. Medicine is always evolving and it’s interesting to learn about.
@chiaragibbs1693
@chiaragibbs1693 3 жыл бұрын
Training pharmacist here (as well as a chronic illnesser too) and find these kinds of chats really really interesting
@dawnchristine1438
@dawnchristine1438 3 жыл бұрын
I've had Sjogrens Syndrome for 25 years and have horrible acid reflux. I never had any great success with any meds for it. My Pulmonologist recommended Dexilant. It's a God send. I've not had any great problems since being on it.
@Trekkifulshay
@Trekkifulshay 3 жыл бұрын
I did use a shower caddy for a while instead of a basket for all our meds and then went back to the basket.
@ravencromwell06
@ravencromwell06 3 жыл бұрын
Peter should take some Mucinex to help clear up the mucus in his lungs from his allergies. I’m glad that you’re doing well since you have been on Trikafta!
@ChronicallyCassidy
@ChronicallyCassidy 3 жыл бұрын
The more ya know the more ya know! “I dont have “the corona “” 😂. Liking the bring down your morning tray. I’m picturing Cinderella bringing up trays to her stepsisters lol.
@elizabethseaberg7785
@elizabethseaberg7785 3 жыл бұрын
I take azithromycin for my cough variant asthma inflammation and mucus production. I know it’s not the same as CF. But it’s been so helpful! My flare ups were so bad I was tested to rule out CF as an adult. I also have significant neurological disease (autonomic failure) so definitely have a lot of meds!!!
@caprialnichols7659
@caprialnichols7659 3 жыл бұрын
Loving the vlogs keep it up Mary and Peter
@kellywillingham585
@kellywillingham585 3 жыл бұрын
I have Fibromyalgia, celiac and hypothyroidism. I’m currently trying to get over a migraine headache. Do you have any suggestions for getting rid of them or getting through them? Thanks! I love watching y’all. I don’t feel so alone with all my medical issues. Thank you so much! Some days I wish I could go through the screen, give you a hug, and worship with you! 😊🤟🏻❤️
@meganconway8357
@meganconway8357 3 жыл бұрын
Thanks for letting me know about the ranitidine thing, I had no idea. I'm on a prescription for it that I only need to fill up once a year as I don't take it regularly. I had no idea it had been completely discontinued in my country for safety reasons. Feel like someone should have told me sooner but thanks for telling me.
@joybann7353
@joybann7353 3 жыл бұрын
Haha. “Are you thinking.why not a duffle bag?”
@lindadickson9547
@lindadickson9547 3 жыл бұрын
I dont have Cf but love to learn.
@katib9032
@katib9032 3 жыл бұрын
Liquid vitamin E - oh yes! Good memories! I loved it as well. That was a sweet reminder of cf-childhood 🙂
@imogenoliver
@imogenoliver 3 жыл бұрын
What does it taste like?
@katib9032
@katib9032 3 жыл бұрын
@@imogenoliver kind of milky, and sweet...
@imogenoliver
@imogenoliver 3 жыл бұрын
@@katib9032 hmm I thought maybe sweet and kind of fruity but I didn’t expect milky. I get why it would taste good though ☺️.
@summerb758
@summerb758 3 жыл бұрын
Hi guys! I had to laugh when you mentioned Zantac. I had to go on that for awhile my stomach was messed up. Anyway went on a job interview got the job went and had to take a drug test. Came back positive I was in shock. Found out quickly that it was the prescription Zantac that gave a false positive. If ya wonder I did get it worked out pretty fast and still was given the job. But scary to know something like a Zantac can do that. If ya read this have a beautiful day! Stay safe much love to everyone.
@imogenoliver
@imogenoliver 3 жыл бұрын
☺️
@carolbuchel3011
@carolbuchel3011 3 жыл бұрын
I have a red basket! And it does work!
@TechGirl84
@TechGirl84 3 жыл бұрын
I too, have been on an antibiotic since I was about 5. I am prone to urinary tract infections. (I have Spina Bifida, so I intermittently catheterize, so that introduces bacteria into the urinary tract.
@moonfichter7899
@moonfichter7899 3 жыл бұрын
I definitely know when I don't take my morning stomach medicine I know exactly what ur talking about!
@533134
@533134 3 жыл бұрын
Or if the medication timing is wrong 😩
@ThePomelo94
@ThePomelo94 3 жыл бұрын
If the tray work then it works! I need to get me one of those though I have everything on my kitchen counter 🤔 or clean my pill drawer
@kathymerlo2377
@kathymerlo2377 3 жыл бұрын
so wonderful to have these life saving and changing meds!! I do have a question~ I know you do your vest (once or twice a day?)~ do you still do Chest PT? I remember in your early videos Peter often doing your Chest pt.... just wondering if you still have to do that
@carolynkennedy1083
@carolynkennedy1083 3 жыл бұрын
Use a CABOODLE, 90's child! 💕💕
@beachysands4036
@beachysands4036 3 жыл бұрын
Will you get rid of your feeding tube?
@lauramoore7337
@lauramoore7337 3 жыл бұрын
I was wondering what causes your headaches, is it related to side effects from your medications?
@dpepsi72
@dpepsi72 3 жыл бұрын
I have been on several different medications for depression and anxiety over the years. When a new doctor or someone asks me what I am taking, I have to stop and think of what I am currently on!
@rmjames83
@rmjames83 3 жыл бұрын
Peter, What about u make Mary one of those old fashioned wooden tool boxes with a handle?? I can’t put a picture here, but some good pictures come up when u search “old fashioned wooden tool box”😉
@troopertaylor498
@troopertaylor498 3 жыл бұрын
Whilst you are talking about pill planners, I am, in fact, filling my pill planner. Totally not planned. 😂😂😂😂
@troopertaylor498
@troopertaylor498 3 жыл бұрын
Oooooooh you’re right! That Prilosec is LIFE!!! 😂😂😂😂
@imogenoliver
@imogenoliver 3 жыл бұрын
Well at least it was an entertaining filling up of your pill planner 😂.
@saraleemacdonald
@saraleemacdonald 3 жыл бұрын
I take 7 pills in the morning and call it "Pills the Breakfast of Champions!"
@LiterarySnob
@LiterarySnob 3 жыл бұрын
I counted mine this morning. 18, plus inhalers, and oxygen 24/7.
@6Fiona6_P_6
@6Fiona6_P_6 3 жыл бұрын
( I know I’m splitting hairs here but..... ) 13:30 The word isn’t Immune. The proper terminology is Tolerance. So the question should’ve been -: Has your body built up a tolerance? And do you need more of your medication now? Having said that...... Mary You have my full sympathy for those times You’ve had to give up Your medication for digestive problems. As a person who suffers from problems with my own digestion and am currently taking a medication whose brand name is Salpraz. One tablet every night. And if I’m going through a bad time with GERD I also take a medication whose brand name is Nexium. One tablet in the morning, as well as the Salpraz at night. And I also have Gavascon chewable and Mylanta on hand to take as well. If needed......... ⚛️☮️ 🌵 🌏
@DemiFu
@DemiFu 3 жыл бұрын
I have extreme acid reflux as well. I take it morning and evening. Doctors want me on only mornings but if I do that I get sick like hell. No way I'm stopping. Even tho they say it's not good for you long term.
@annapotts2568
@annapotts2568 3 жыл бұрын
You do so well with your meds. I take about 15 each night and 4 each morning, and for some reason I always gag half way thru swallowing. You seem to chug back multiple huge pills easily!
@olingecko
@olingecko 3 жыл бұрын
How can you tell when you need less enzymes?
@annjtanj3628
@annjtanj3628 3 жыл бұрын
Hi Mary. I wonder if on one of your vlogs could you address this question? So, I deal with heavy allergies that obstrucs my airways and over the years, I've developed an issue where I am claustrophobic and I don't like heavy weight on my body....specially my stomach or chest. I say this because when I watch you guys with Harry laying on you, I often wonder how you are handling the pressure of his body on you when you are dealing with lung pain, etc. Sorry that was a winded question lol
@suexyong1742
@suexyong1742 3 жыл бұрын
Mary, I understand why you take multiple medications for your CF. Your CF effects your entire body. I myself take multiple medications too. I have BBS 7 which effects my entire body.
@sbayles
@sbayles 3 жыл бұрын
This is totally off topic, but I’m starting to miss Mary's parents.
@debbiedrekie48
@debbiedrekie48 3 жыл бұрын
Where is her parents ?
@sbayles
@sbayles 3 жыл бұрын
They live in Maryland but of course she's not seeing them due to COVID
@nathantatosian280
@nathantatosian280 3 жыл бұрын
Hi Mary and Peter
@SuZQ4361
@SuZQ4361 3 жыл бұрын
Let’s talk headaches. I’ve been suffer with chronic daily headaches since I had a brain abscess in 2003 which caused me to get hydrocephalus 17 years ago. I’m finally seeing a headache specialist as my neurologist and neurosurgeon are out of ideas. I’m interested to hear how frequent your headaches are as mine are almost daily.
@2listening1
@2listening1 3 жыл бұрын
I think they have now pulled Zantac off of the market. :( I can’t find it anymore and I miss it.
@I_AM_HYDRAA
@I_AM_HYDRAA 3 жыл бұрын
they have
@disneyfunatic3179
@disneyfunatic3179 3 жыл бұрын
Saturday night, my routine is to get in bed and set out my pills for the week. My husband has now got in to the habit of helping me. He will hand me the pills and then I will put them in the combler! Next step is for him to figure out what pills go in which part! I have a set that is 4 times a day, morning, lunch, dinner and bed plus another one with pills I take around 4-5am! and then all of my insulin supplies on the side as well! wow! I stay busy with meds as well!
@katherinezulick8637
@katherinezulick8637 Ай бұрын
A clear tackle box could maybe work too
@kiwicraner2538
@kiwicraner2538 3 жыл бұрын
Ugh I was on famatodine and omeprazole for 2 months and the "withdrawal" was awful!!! My reflux was 10x worse coming off of them than it was before I started taking them. Worst feeling ever. Thankfulky after about 3-4 weeks my body went back to regular old run of the mill reflux.
@carolynlong9148
@carolynlong9148 3 жыл бұрын
I think the questions there asking are interesting because. One I'm on inhaled steroids three times a day for Asthma. If I miss a doce or forget to do my inhalers my lungs will let me know right away. It used to be that if I forgot to use my steroid inhalers it wasn't such a big deal but now. That I time my inhalers I can't change the time of day I use them. I make sure if I'm going out to take my twelve o'clock inhaler with me. I like the organizational part of taking meds because it also helps me to stay on top of taking my pills. Thanks for sharing you're medical day and as all ways I will see y'all tomorrow god bless.
@37483993
@37483993 3 жыл бұрын
Could you show us how you organize your meds? I take tons of meds with 90 day supply (cheaper) and I'm overwhelmed.
@elizabethreeves4462
@elizabethreeves4462 3 жыл бұрын
could your sister (or other post lung transplant cf patients) benefit from trikafta?
@yg18733
@yg18733 3 жыл бұрын
I asked my transplant team. Desperate for it. So far it isn’t licensed for transplant cf. 😢
@elizabethreeves4462
@elizabethreeves4462 3 жыл бұрын
@@yg18733 interesting. i wonder why that is?
@imogenoliver
@imogenoliver 3 жыл бұрын
I’m not exactly sure but I know my uncle with cf has pretty much been reborn after his lung transplant nearly 2 years ago so from what I’ve seen I don’t know how much of a difference it would make. But it would be interesting to find out.
@elizabethgreen6770
@elizabethgreen6770 3 жыл бұрын
I have really bad acid reflux, try to keep up with meds.
@ginybrown8738
@ginybrown8738 3 жыл бұрын
Have you looked into the surgery for GERD? I had bad reflux, so I was tested and I qualified for the surgery. Your LES valve is not working so the surgery wraps 20 percent of your stomach around the LES valve. The LES valve is suppose to prevent the acid from coming back up. I am so grateful for this surgery because the meds can do permanent damage to your insides. Have to look for a surgeon that does this operation though, it’s called a Nissan fundaplication. (SP)
@crystalcroft8318
@crystalcroft8318 3 жыл бұрын
Mary. That shade of blue 💙 looks beautiful on you. Do you have a skincare routine?
@jonki1980
@jonki1980 3 жыл бұрын
I am fully self diagnosed medical nerd I love learning stuff medical - so interesting Is there a way to transport the pill tray easier? Peter you are reading my mind 👍 Vlog recap 🎥🌄🦺❓🅰️💊🌈🤔📳X🌌👋
@imogenoliver
@imogenoliver 3 жыл бұрын
0:39-0:49 100% 😂. I’m trying to think of a good pill related question but I can’t think of one. Oh, what kinds of tastes in your experience have you gotten from different medications? My uncle who also has cf said that sometimes in the hospital the nurse would give iv versions of some meds because the taste of the oral version would be horrible enough for the patients to not be able to get them down. But then he also said that some of said iv meds still tasted horridly the back of his mouth somehow.
@joannecottam2387
@joannecottam2387 3 жыл бұрын
I use a clear box. Or a small tackle box. I am on zithromax 3 times a week for my lungs. Works weirdly. Is it true Trikafta is $300,000.00 a year??? That is insanely high!!! I just don't understand why some meds are so high?!
@yvettepritchard3983
@yvettepritchard3983 3 жыл бұрын
It crazy how you still take your all that but some people are on just trifaxed and only that and the dont do the breathing treatment and they dont have therr pick in anymore I guess everyone is different t though
@amybailey2812
@amybailey2812 3 жыл бұрын
I was on omeprazole for a short amount of time after kidney transplant. After reading the comments It’s quite interesting how it’s used for different things. So I guess Mary is right how we are all medical nerds lol 😂
@TeenDream888
@TeenDream888 3 жыл бұрын
I have a little name for every pill I take that keeps me alive: Power In Loving Life it's a little reminder to myself that every day I am taking care of myself and living life to the fullest by accepting what my body can no longer do while enjoying the heck out of what it will allow, and the pills are what makes that happen
@imogenoliver
@imogenoliver 3 жыл бұрын
I’m glad your living life, now I guess I have to figure out if I’m doing that or not?
@TeenDream888
@TeenDream888 3 жыл бұрын
@@imogenoliver I like to say forward is forward. some days I move an inch, others a mile. just keep moving, every little bit counts!
@imogenoliver
@imogenoliver 3 жыл бұрын
@@TeenDream888 yeah that's very true thanks ☺️.
@eej1983able
@eej1983able 3 жыл бұрын
Always been a medical nerd but fascinated by ppl who have so many daily pills. I take 5 a day 1 twice a day lol. That's it. Two are sublingual
@janineschindler2966
@janineschindler2966 3 жыл бұрын
I got so many medical things going on I take 12 pills in the morning and about9 at night. I will be able to tell right away the same day if I miss my bipolar depression medication. Oh Lordy I'm not well if I miss that. A 5 minute conversation with me will be like a tornado. You get the calm at first then the stress with the wind picking up..kinda hard to explaine...then the extreme winds I just out of the blue --frantically start crying and I really don't know why. Then a couple minnutes later I will be laughing about something..? Thats me without those meds. So I can tell right away that happens the same day. Not just one time. All throughout the day.
@carolynk.9856
@carolynk.9856 3 жыл бұрын
I thought this was very interesting! At work we see a lot of bulldogs and they tend to have aspiration and breathing issues. So when you were talking about your aspiration issues I thought, oh just like a bulldog! Sorry to compare you to a bulldog but they can get aspiration pneumonia pretty easy if they vomit and get it into their lungs. They have issues due to a smushed face vs a lung disease. Anyway I love when you talk about medical things! Also I was just wondering when you started taking vitamin K? I thought you have mentioned taking it for your enlarged spleen but it also helps when you are coughing up blood.
@bettywallington2526
@bettywallington2526 3 жыл бұрын
I always wonder if my vitamin s I'm on do I really need more...but your right if you miss them here an there and it's not a everyday miss just after 1miss a day right you don't feel it. Doctors are not so into vitamins as a real prescription, so I have to remind them so go up go down stay the same ugh...fish oil it doesn't like me. But it's a good filter for my liver and I wonder if gummy fish oil is more easy on my tummy?? Mary you made what to really look into my vitamins d3 e fish oil I take them faithfully v12 is a must but how much...they are my life on a daily basis..and they are not cheap and like you said" they are a must for all organs. Lungs liver digest asitreflex too. Copd took my mother and her side of the family but no signs of asthma or lung problems. But it took her parent's they called it black lung in the early 60s 70s but copd now..80s 2021.but it didn't hit thier children. But others 1st.cusins my mothers 4 sisters and brother. Lungs breathing your disease I'm so grateful for you to speak to us I follow you and your husband and your sister an parents from you..your a great friend to me you an I admire you an Peter greatly.
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