ON TRIKAFTA - DO I STILL NEED OTHER MEDICATIONS?
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- čas přidán 10. 01. 2021
- MEDICATION Q&A - How my routine has changed through the years!
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What meds does my body need? Any different ones now that I’ve been on Trikafta??? Here are some answers to your questions!
Do you still use your nebulizer?
Use a CABOODLE! For the little meds/supply tray!
How many are in your hand at one time pill wise?
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 😁
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!
Mary, it’s got to be so meaningful to have Peter there as reinforcement when you need it.
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.
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. ❤️🙏
This is literally the cutest video I love how candid it is!
Peter knowing all of Mary's meds is amazing. Such a good, attentive partner.
Thank you for sharing all of this information Mary & Peter!🤟🏻
Peter: I'm trying not to cough!
All of us: On this channel? Why? Get it out, dude! We're here for it!
I thought the exact same thing
Absolutely
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 😆.
Hope you two are doing well awesome video congrats on being 10 years married love you both
I’m in college majoring in nursing and I love you guys videos. They are always so positive and informational. Love you all❤️
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!!
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 🤗❤️❤️🙏🏼😘🐕🐱
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.
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.
Mary.... as you know, Trikafta is a miracle. It is such a joy to see how well you are doing. What a blessing 🙏🏻💗
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
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 🌲❤️💕🙏
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 😁💙
Loving the vlogs keep it up Mary and Peter
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)!
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:)
Hope you keep feeling better ☺️.
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.
I have Cerebral Palsy and have to take many meds. Thank you for sharing.
I am happy you are doing well with trikafta
Thank you!!!!🙏
So impressed with Peter’s knowledge of Mary’s meds! So great of Mary to appreciate it as well! Love you both!
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!
I use a basket to for my medical supplies. It's easy to carry, and light enough for me to handle.
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.
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. 🥰🌺🌹♥️🐾🐾🦮🐾🐾🐈⬛
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!😇👣
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!!
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.
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?
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
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!!!
Ooh ooh I got an idea! You should get white comblers and paint the and sell in your store
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.
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.
You are doing such an excellent service to new Cf patients and their families. Thank you.
I have a red basket! And it does work!
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
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.
I did use a shower caddy for a while instead of a basket for all our meds and then went back to the basket.
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! 😊🤟🏻❤️
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.
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 :-)
Peter - you should make her a toolbasket type thing for all her meds
Hi Mary and Peter
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?
Training pharmacist here (as well as a chronic illnesser too) and find these kinds of chats really really interesting
I am definitely a medical nerd! And I just filled my combler. I have Lupus, not CF.
Same here, but my complications are with my lungs as opposed to the kidneys which is most common
I dont have Cf but love to learn.
I love learning more and more about cf
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😇🙏🐾🐾🐾🐾🐾🐾🐾🐾💚💙❤😾
Liquid vitamin E - oh yes! Good memories! I loved it as well. That was a sweet reminder of cf-childhood 🙂
What does it taste like?
@@imogenoliver kind of milky, and sweet...
@@katib9032 hmm I thought maybe sweet and kind of fruity but I didn’t expect milky. I get why it would taste good though ☺️.
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!
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!
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!
Could you show us how you organize your meds? I take tons of meds with 90 day supply (cheaper) and I'm overwhelmed.
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.
I have learned so much about CF while following you all, love the family💞
same
Thank you for sharing this Mary. It’s really fascinating xxxxxxxxx
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.
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.
☺️
Peter is very good all husbands should be like him . I know his mom is very proud of him.
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.
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. 😢💜
Use a CABOODLE, 90's child! 💕💕
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.
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!
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.
Hi hope yous are good xx
I was wondering what causes your headaches, is it related to side effects from your medications?
I try to stay organized with my meds for my MS but I couldn't. I just haven 1 bag i keep all my meds in
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.
I definitely know when I don't take my morning stomach medicine I know exactly what ur talking about!
Or if the medication timing is wrong 😩
Great video learning more about cf is always good
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!
Mary, you make me 😂 I’ve been on dozens of different meds and I only remember one that tasted good and made me ask my Mom, “Do you think the orange Triaminic might help me (depending on symptoms I was experiencing) I think after experimental stage IV cancer meds, EVERYTHING TASTES/Feels like an improvement!🤣What are “normal lungs?” 😉💜
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?!
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.
Haha. “Are you thinking.why not a duffle bag?”
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
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.
Will you get rid of your feeding tube?
I have a question for you Mary. Would you feel it if you had to stop doing your vest and take your inhaller? English is not my first language so sorry for the typo's 😅
Hey!!!
I have Spina Bifida, I am always interested in different types of medical illnesses and disabilities.
I have that EXACT 'combler' and I agree, it's awesome!!!
Do you take k2 for calcium availability?
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”😉
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.
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.
I have really bad acid reflux, try to keep up with meds.
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)
Is trikafta helpful to people who have already had a lung transplant?
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 😂
How can you tell when you need less enzymes?
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.
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 👍
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I have M.S. i think if they took me off any meds gabapentin would be the to do so with. I have a lot of nerve pain and it helps with it.