CYSTIC FIBROSIS | A DAY IN THE LIFE (10.11.16)
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Made me almost cry to see you cough so hard and struggle to breathe like that. 😢 Praying today was a better day for you.
Tammy McCall Me too. It made my heart hurt to see her coughing so hard!
choking back the tears......
Tammy McCall same it must be so annoying at times 💗💖💕
Tammy McCall my brother had CF he had something with CF my mom came in crying so much I asked and I heard that he had something with CF and my older brother was there I've never cried so hard in my life.
For those who reading this hope you are have a blessed week and don't forget you are amazing and wonderfully God made you with a purpose you are worth it 💖💖
Thank you Sarah! All the blessings for you too, much love... ❤
No hun YOU are amazing! Thank you and I hope your week is fantastic. xo
Anita Cunhal aww much love and blessings xoxo
+Sarah Elizabeth Thank you for being positive! That made my day!
we all need it!! we all need encouragement
Wow, you put a ton into that vlog! I appreciate your candidness about how your coughing goes in the morning. I find I hold my breath through each of your cough cycles. I wonder if there's an easier way to cough that isn't so wracking. I've looked into the table thing that flips you upside down because maybe that would help the mucus come up (I'll do ANYTHING to fight back!). Always on the look out for ways for my daughter can get through all the cf stuff, too. Impressive that you can eat and drink during your vest! Even more impressive that you didn't lose it all when you started coughing again! Thank you for today (yesterday) in more ways than one
Hugs to you Claudia :)
Your hair always looks great, even in the morning :). And I love the shape of your eyebrows (*creepy* ^^).
Sometimes I ask myself, why the enzymes aren't available in higher doses, so that you could swallow less at once. This would make it at least a little bit easier.
Sarah R. I've always loved her eyebrows too!! Lol. They are the perfect shape :)
IKR? Mary is naturally beautiful!
There are enzymes available in higher doses but this is the one Mary and her team feels works best.
I worked in a children's hospital in Portland, Oregon and saw so many CF ers during my time there. It was always my mission to find the exact thing they were craving (I did room service!) and bring it to them. I was uneducated about the disease at the time and your vlogs have truly opened my eyes. Thank you for educating me and for introducing me to your amazing family! Stay strong :)
NicTracks a person from my school who had CF went to Portland for treatment
Good for you
Who needs a necklace when you have an accessed port to flaunt.
I've seen this comment before... it's hard to "like" watching someone go through so much pain and hardship. I definitely think of my like today as a thumbs up for your attitude and sharing all of this with us. Lots of thumbs up for that!
It makes me sad seeing you cough like that Mary :( .. I know its reality but if I could cough for you...even for a day to give you a break I would...you are a strong lady! with a great support system :)
One of my favorite vlogs so far. So real...because some days you just have to but you may not want to...you know what I mean!? I also love the video style and the editorial comments, lol!
I can't imagine how painful coughing like that must be day in & day out. Bless your heart!! Praying for you always! Xo
P.S. You are so beautiful, inside & out!!
A little coffee with your creamer, Peter? ;)
That's exactly how we love it!
Wow! I take too much for granted. Thanks for sharing your life with us!
PS On a lighter note, I'm impressed how many pills you can get down with one tiny sip of water 😂 I have to have a full cup (or 2 or 3) for 1-2 pills, lol.
Does bending over while coughing help at all? When my cough sounds like that with the mucus in my lungs I bend over and it helps get the mucus up
They sometimes do that for kiddos (maybe it can work for adults too), its called postural drainage. So leaning over the edge of a bed or something, and then doing the CPT or with the vest.
Hi guys. You were both very much on my mind in Synagogue today. May we all have a good year to come xxxxx
Mary you are a freaking warrior!
Mary- you are a true example of staying strong no matter what the circumstances. You were there coughing for a long time, so long not even all of it would be able to go into the vlog, and you stayed super happy. I cough for about a quarter of the time you coughed and I would be gagging for so long. Your whole life in general as a whole is one I look up to. I could never imagine having to take as many pills as you do, going to the hospital that often, and going through all those coughing fits, and staying happy and positive the whole time. You truly are inspiration to me. That is why I look forward to watching your vlogs everyday, you make me happy and put me in an overall happy mood! 😊😉😄
Mary!!!! you are a pill taking master!!!!!
haha! Thank you so much- Maybe I should have a shirt that says that...
i love all your videos, im so glad you share this with us i hurt for you ms. mary when i see you cough i always catch myself breathing deep for you, i hoping this is not being disrespectful to you, i just love you guys so much and watch your videos everyday, god bless you great people
Thank you for taking a deep breath for me!
Oh Mary, I'm so sorry you have to go through this everyday, but I'm glad to see you can still find a piece of joy in each day. I am worried about the current direction with your cf and the lack of treatment, I do hope it doesn't continue on a downward trend. Thanks for sharing the good bad and ugly of your life with cf. Really enjoyed the style of this video btw.
hopefully she can be a candidate soon for a lung transplant
does anyone know why shes not having a lung transplant like her sister?
Mary has said it's because her lung function has not been bad enough to warrant a transplant. There are serious risks involved, so they probably try all other avenues first before resorting to a transplant.
Oli Eats Cookies she isn't to the point where she needs one yet. I believe before she has said that if her health gets bad enough that they will consider it as an option.
Oli Eats Cookies she is not as bad as her sister
Mary answered my similar question above :) x
glad this was asked I was wondering the same thing.
Oh Mary. You handle this so well. I wish I could gift you a morning of waking up with clear lungs.
I think it's amazing how Mary's husband (can't remember his name😬) is such a great helper with all the things Mary need halo with
Nicole Chapman "Peeeeeeeeeeeter" as Mary would say 😉😂😂😂 You can see how much they love one another. I love that he's very hands on with her care.
Peter
Hips N Wits lol as I read ur post I could pick Mary saying peeeeter
Nicole Chapman Peter is the name of Mary’s husband
tomorrow is my birthday - 15th of October
I'm turning 18
I'm excited
hope your doing better sweetie
HAPPY BIRTHDAY!
Editing skills were on point for this vlog! You guys have come a long way ❤️️
i loved the style of this vlog. its better seeing you do stuff rather than, you doing in then telling us about it after. sending you all love all the way from saudi arabia
I started watching you around a year ago, and you are truly inspirational. I love how you all stay so positive even when you are at your worst.
oli is such a good boy! please scratch behind his ear for me! sending love!
He says, Thanks for the scratch!
Hi! I did like this take of actually just kinda showing how a day goes for you. Just wanted to share I saw my primary doctor on Thursday. Initially after whats been going on she thought I should see a neurologist again. However on the fact of most of my EEGs being clean when I mentioned the possibility of POTS she agreed it would make sense with my symptoms. So I am now waiting on an appointment with a cardiologist. Thought I would update you guys and also I was wondering does it ever scare you when you have your coughing fits or are you pretty used to them? I have coughing fits similar to that (with my asthma) sometimes and it scares me.
Oh I'm glad to hear you will be seeing a specialist and hopefully you can soon find a diagnosis. I feel like that time waiting for a diagnosis is the hardest... when those test results come back good...it's great that the results are good...but can be discouraging as you await to find out what's going on in your body. Hang in there! And I'm pretty used to the coughing fits, but I do NOT enjoy them.
I heard it can sometimes take a couple years to get a POTS diagnosis, but a tilt testis the best test to get a diagnosis so I will definitely be requesting that. And if you don't know what POTS is (since it is not a well known illness) it stands for postural orthostatic tachycardia syndrome. My heart rate is usually up (around 100-110) and when I stand up or even sitting sometimes it goes up to like 160-180. Which can obviously have some complications of its own. So the sooner I can get a diagnosis the better. Also I hope this is ok to ask, but can I ask for you guys to pray for me? For my health situations and for some personal stuff I have going on. I know you guys are pretty busy, but I would really appreciate it.
I just prayed for peace and endurance as you walk through long days of appointments and not feeling well. Hang in there!
Thank you! And I definitely am having one of those not feeling well days and on my birthday, but that is life. Thank you for all the courage you help us with by showing you and Peter's day to day experience with chronic illness and showing how strong you are by puling through the best you can every day! Give Ollie a belly rub for me!
+ElvenLovePro getting the diagnosis of POTS can be discouraging but the sooner you get a TTT and on meds, the better. I just had to do another TTT 10 years after my initial diagnosis since I was passing out more, more tachy... to check to see if my meds were working well enough. That day they were so we don't really know why my dysautonomia has gotten worse (was also diagnosed with gastroparesis, small bowel dysmotility, esophageal dysmotility, ... in the past couple of years and now have a jejunostomy.). I've heard of some people getting IVIG for their dysautonomia so I'm looking into that as well now. I had it 12 years ago when I was paralyzed and I attribute it to getting some movement back. Praying you get answers and treatment asap!
Omg watching you cough like that broke my heart! You're so strong, Mary! ♡
Thank you for being so candid about your illness - it really puts your positivity in perspective. You always have a smile for your internet fam & positive words every day. I know that helps me as well as so many other people out there! :)
My son loves your access songs, he said "hey Mary, I no longer have a port in my chest, in my chest". He loves watching Ollie and it shows him a future glimpse into life with his service dog (once she is old enough).
Aww, that is so sweet.
Does your son have CF too? How old is he?
SuperMissblueeyes, hi, no he doesn't have CF, he has a brain tumour and his port was put in for chemo and all that comes with it. He has been super lucky and has nearly two years off chemo so we got his port taken out. Plus it had stopped functioning. Oh, and he is now 14.
Malo1829 I'm so sorry he's been through so much in his life! I'm glad he's been able to come off chemo. I hope things improve for him! Have you checked out the CTFxC channel. The guy who does it is Charles Trippy. He had a brain tumour (what's left is dead) & had to go through chemo etc. Your son may like to watch his channel. He is the bass player in the band We the Kings. He also gets up to all sorts of mischief so he may bring smiles to your son. I think your son would enjoy watching him.
SuperMissblueeyes, yes, we have been watching Charles for a while now as if he ever needs chemo again he will also be given an oral dose (due to severe allergy to one of his first drugs). My son's tumour isn't dead but it is benign, which is great as it won't spread. We just hope it remains stable, he also has a rare aneurysm that we keep an eye on but he is doing so well day to day he is really lucky.
We're new to your channel, just subscribed. We're definitely going to add your beautiful family to our prayers.
Hi there! Thanks so much for saying hi and becoming a part of The Frey Life family!
You guys are inspirational. I will keep praying for the three of you.
wow thank you Mary for really showing us what it's like to have C.F. I suffer from chronic asthma that this makes my second time being admitted to the hospital this month and I'm just not getting any better, It's been bad since July but watching you makes me wanna cry like mines nothing. You're so strong pushing everyday like it's a walk in the park. I watch you and Peter everyday hopeing I could find the strength you have in your tiny pinky finger but i sometimes can't find it. I put my trust in Our Lord and Savor Jesus Christ to heal me but I'm still so sick. Please keep me in your thank you your friend Ramona
Thanks for the heating tip. I got it too hot once that was not pleasant!!
This way it can still get overheated, but it doesn't take long to just warm it up slightly. Hope that helps!
Probably going into the hospital soon. Only have MRSA but something is making me have a lung exaserbation.
Orals didn't work and doing 3 treatments a day is a bitch. I'm delta F508 and 17. Hang in there girl.
I loved the fancy camera techniques you used... but it just broke my heart seeing how Mary wakes up💔😢 you don't always show those moments of your life. I couldn't comprehend but seeing those little clips...💔 praying for you to have better days.
You guys always brighten up my day! You make my soul happy :) Bless you and thank you for everything you're doing! The Lord is working through you guys xxx
seeing you coughing, basically choking for your air hurt my heart so bad 😭 its like when you try to cough up mucus and you can't get it out. im so sorry that you have to deal with this on a daily, you are in my prayers!
I use the same sinus rinse! Not glamorous but it does help. Mary, I find myself trying to help you cough up mucous. Wish I could help. God bless you and Peter and Ollie!
I wish I could swallow a bunch of pills at once lmao! I have issues, due to muscle contractions and spasms, swallowing tiny pills. I go in order from the smallest two at a time them my larger capsules one at a time. It takes a while which is super annoying. I am the same with food. I have to chew chew chew so much because I can't swallowing any morsels. My Fibromyalgia and nerve damage in my neck and back cause involuntary muscle spasms, convulsion (that get so bad it is like having a seizure*) and contractions. I do my best and am always looking at life in a positive way. That is how we become a conqueror! LOL
I have a 2 year old with CF & I try to watch all of your videos. You guys have taught me alot about CF♡ My son is currently in the hospital due to catching RSV. You guys are always so positive and it helps me remain positive as well :)
aww Mary! I hope your day went well today! way to go for taking that many pills every day. I'm surprised you don't choke on any because I sometimes choke on just one😂. I really love your grey shirt. have a good rest of the day:)
I wish there was something I could do to help you xxx I'd do anything!!!xxx Hope you're feeling OK xxx love you guys loads xxx sending lots of hugs xxx
oh and I forgot to say Thank You Mary for sharing very personal aspects of your daily life with CF. Give You a big hug and kiss, Peter a hug, for being the best husband ever for you and get Peter and Olive to hug you too!
Do they talk about a transplant to you yet?
Sending prayers from Texas for you. Thanks for sharing the beautiful New England fall colors. We don't see that until much later in the year if at all
Is it always like that in the morning? You are sooo brave Mary. Million thumbs up for u.
Sadly, that's the reality for CF patients whenever they go without coughing for too long, but it's especially bad in the morning as that's the longest time they go without coughing, is when they're sleeping overnight.
Wow Mary, I thought that my mornings were rough! Mine are mild compared to yours. You are such a fighter. I pray that the antibiotics help you.
mary I have never realized what a person with CF goes through, I am sorry you have this terrible desease. even when you are feeling so bad , you still have that happy face. God Bless you.
I wish Mary could be 100 percent healthy. God bless u three!
Have you ever thought about getting a nasal rinse pump? It'll force more mucus out and much quicker. I really like it for my severe allergies.
Aww i feel so bad for ya mary and all that coughing. I got some digestive enzymes since i have issues with beef and things like that. I got the idea from you so thanks. Hope ya get to feeling better love from Florida
Poor Mary this makes me so sad....😥 hope you feel better!!! -Olivia
OMG Mary my heart breaks for you in the morning reality 💔😢
watching you cough is heartbreaking. I hope they find a cure soon.
I like the way your vest sounds when you're putting it on... That's weird but yeahhh
:D You use the same sinus rinse I do for my constant allergies haha. I haven't met anyone who does! #twinkies haha
I'll be praying for u. There will be a world with no sickness or death one day!
I know CF I cared for a child with CF I use to cry away from her because the PT was something I did and I hated to hit her so hard to losen her phlegm.I every morning then I had to open all those pill and put them in applesauce they smelled horrible and tasted worse but I never ever showed her any sadness only happenness
God Bless you Donna... I have 3 kids and when one gets hurt it hurts me worse. My first born at the first week he had a terrible rash and screamed at the diaper changes..I walked away crying and my mom took over........oooh
I always look farward to seeing what you did in your day and wish I could figure out youtube to share what I do in mine!
I am so impressed by your ability to take multiple pills at one time. Did you have to practice to learn how to do it, or did you just do it?
Mary you have the most awesome husband ever. You and him are truly blessed.lol Mary I had planned on sending you a care package of 4jars of peanut butter and jelly.but I was told you do not have a p o box cause of issues of germs.😟💙😟
I've only followed you for a couple months, and appreciate that you are sharing the good and the bad, letting us all see what life with CF is like. It's hard to stay positive with a chronic illness, and you do it so well.
I've been an Asthmatic since I was 10 months old, and diagnosed with Multiple Sclerosis 21 years ago, and I dealt with pneumonia several times, where my coughing sounded similar to yours, until I could clear the mucus. I am just finishing off with a bout of pneumonia that started in early July and here we are in October. At it's worst, when I coughed, 5-6 coughs were tolerable , but any more I was passing out from not taking in enough oxygen. I really admire how you are able to cope and be so upbeat.
You and Peter are an amazing couple, who love each other so much it shows on your videos.
Thank you and God bless.
Bob
U make me have a big smile on my face and I don't realise it ur an inspiration.u make me fell like I'm part of ur life
hey Peter and mary!! Love you both so so much :) God definitely led me to this channel full of positivity and love
Head over to our Draw My Life video to find out more! th-cam.com/video/jHYw-gQimws/w-d-xo.html
Peter, have a mold expert come in your home and check y'alls crawl space and home real well. My daughter has asthma and when we moved into a new home she became really ill with lung and sinus infections. We soon found out the culprit was aspergillous. We we're shocked bc you couldn't see it. It was in the walls and crawlspace under our home. We moved and within a couple weeks she fine. just concerned bc Mary has been more ill lately since y'all moved.
Well... i didnt enjoy coming to the hospital with you... i want you to feel better!
Mary, your cough at the beggining of the video breaks my heart! You are the true definition of a fighter!
your fortitude is astounding Mary. you r an inspiration to so many. God bless you both ❤😊
Thank you so much!
Hi Mary and Peter! I know how you like a good deal so I just wanted to share that you can make your own sinus rince solution. 3 parts table salt and 1 part baking soda. Use 1/2 teaspoon per 8 ounces of water. My dad is a chemist and figured it out. Love your vlogs. Hope you have a good lung day.
i have an friend who has this and its helps when they are coughing like that is to rub their back
I'm exhausted just watching the coughing :(
Christmas presents are coming in that i ordered, in bubble wrap! Oh, today is a good day!!
Mary your so beautiful!! I watch your videos for inspiration !! You and peter are so cute and i love how you are always positive!! Keep being happy when you can and you are so lucky to have peter and dont forget ollie! i named my dog oliver just because of you !!! i love you so much ! :)P
I like how when you talk to Ollie he kind of looks at you like no comment
Praying for healing in Jesus name.lfove you guys.I too am a caregiver so I really know how you day goes.Hang in there and "don't forget to laugh every day "
i always wondered does your vest make eating a drinking difficult or different? does it hurt your stomach?
I actually haven't had any problems. The only thing I have noticed...is if i drink a ton of water right before I start my vest, I get what feels like a running cramp. So I just make sure not to chug a bottle of water right before I start.
The Frey Life that makes sense! sending hugs from chicago btw! love yall
Hey guys, I'm a big fan 😊 and I think it's great the amount of view's you get now. and rightly so.
I just got a puppy prospect for service work!
The more I watch. The more I consider religion.
But Mary, even when you're feeling down, you're always so beautiful. I loved that outfit!
All I can think of when you're coughing is that pounding headache that comes with it :(
And the vomit sometimes lol
You got that right! ah! Ever so glamorous ;)
This was a fabulous video Mary & Peter! I feel like this is the sort of glimpse folks need into what it is like living with chronic illness. Tempted to make one of my own to promote awareness and raise support. Lupus has been beating me down pretty hard recently and after 2 weeks in hospital last month I'm trying to rally support before another admission this month for a PEG tube and chemotherapy. Ugh. But it's all good. I'll be better equipped to fight with my new port, PEG, and chemo weapons! And I have hope and faith that brighter days lie ahead.
Love and prayers to you for more good days than bad, and for the wisdom to decide when another hospital stay would be of help. Love y'all 💕
A lupus awareness video would be great! I have lupus as well, which has damaged my lungs and heart. I hope you feel better soon!
I love you guys so much! You are such an inspiration to me!! Sending all my love from England!!! Xxx
Im so early, but can I just say that I love watching yall! Your notifications are the highlight of my day, and have really helped me during some of my own health challenges. Chronic illness is a real drag, but I hope these comments make you smile as much as you two make us all smile with your vlogs! Keep up the amazing work! :)
oh Mary, I am so sorry you are coughing so badly...I know you are use to it but it breaks my heart that it sometimes seems so relentless. Y'all are amazing! Prayers!
Thank you, that means a lot!
Hi Guys, just wanted to say, I have only recently discovered your channel but I am already so inspired by BOTH of your positive outlooks on things at all times no matter how your day is going, and it's a really nice thing to see every day. I look forward to your videos every day now!
Awe, thanks!
Thank you for sharing. I am physical therapist assistant instructor and I will be teaching on the respiratory system this week and found your videos while looking for info about cystic fibrosis. You are a beautiful woman. Your spirit shines through you!
Feel free to use any clips/videos from The Frey Life to share info with your students. It's amazing to me that our videos are able to help educate others. We have heard from an instructor in Japan who has used our videos to educate their students! So cool! It's an honor! Thanks for your encouragement!
Keeping both of you in my prayers!
No, I have bronchiectasis, which is very similar to CF, even though I live in the UK our nhs hospitals don't supply theses vests because if they did then I would probably have one on loan. Cf patient's have access to funding which people with other lung conditions do not, my team says it's unfair, Going private is the only option and the vests are way out of my price range. Mary you are so brave in showing people what you have to do daily, I know how you feel, hope you're feeling alot better.
I would still recommend contacting companies who make vests and seeing if they have any that they can give to patients who aren't able to afford them and insurance doesn't cover. Hang in there!
Cute outfit Mary, looks warm and nice for fall. Hopefully you feel better soon.
I'm praying for you guys! Thank you for sharing your life and your love. You are great ambassadors for Christ!
We are thankful for a platform where we can share everyday life and the hope that Christ offers in the midst of life's uncertainties! Thank you for your encouragement!
Mary you make me realize that no matter what happens in life there is always a way to get through it. You were delt a bad hand but you find the light and joy in everything. You are such a fighter!
good luck with your pft test today
even if it's not the first time we see how hard morning can get for you this time I was almost feeling your pain almost because I can't know half actually...it makes me even more realise how a strong woman you are and remind me again we you guys are my inspiration in life
I love you guys I subscribe about 3 months ago I love the way you guys are so humble I always pray for mary thanks for sharing your videos
:)
Love your plaid leggings Mary.
i adore your guys positivity. no matter the situation you push through and you laugh and smile. i can always count on you and peter to make me smile and give me strength to push through the toughest days. i truly appreciate you guys. much love from ohio 💖
mm jml
Peter and Mary, thanks for allowing me to tag along with you to the hospital. I enjoy hanging out with you guys!
Thank YOU for choosing to tag along!
Your positive attitudes and your smile (Mary) are a balm to my soul. I have chronic pain from a connective tissue disorder and several other reasons but you have inspired me. Thanks
God Bless you..hang in there