Your videos make me think about my friend in kindergarten who had cystic fibrosis. I was so young, I didn't understand how very sick she was. She used to come to school with an IV in her arm with a cast. I never really thought much of it, I just enjoyed her company. She sadly passed away in the first or second grade. Her funeral was the first time I remember seeing my dad cry. I was too young to understand what had happened, but now that I'm older, I think about her and it makes me feel sad, but also grateful that I knew her and that we were able to be friends. I will never forget you Christi Bates. You were a good friend.
My mothers lungs went to a gentleman with CF! He is a wonderful person. He has done things he could not have done before the transplant. Thank you for sharing this with us!
Oh my goodness! I'm so glad to hear that you are able to celebrate something good amidst the sadness of not having your mom with you anymore. Thank you for sharing that with us!
I am medical student studying CF and I wanted to see the patients' point of view. So I watched several of your videos and I have to say that your possitivity surely inspires thousands of patients to stay optimistic and generally everyone to appreciate life!! stay strong !!!!
Can we please take a minute to appreciate how incredibly beautiful Mary is and without a stitch of makeup seriously Mary your complexion is amazing! Your so beautiful inside and out and such an inspirational person!
You are so pretty. I pray the Lord will heal you one day. You know he is in control. Just keep looking up that is where your help will come from God Bless you both
Jen's Life best comment read all day! She puts me in a great mood. I feel like she's a great model for kids. She doesn't feel bad for herself, but she recognizes how we are all different.
Well, thanks. See I have diabetes and she makes me realize I can fly when I think I can't walk. I'm only 36 and 3 years ago I lost my eyesight (legally blind) thanks to cataracts. I also have PCOS and achalasia among many other issues. If she can lead an upbeat life with what she has I realize so can I. She is a role model to me as well.
My best friend has CF and a few months ago his lung function dropped from 72% to 59%.. But within a few weeks it got up to 70%. He kept praying everyday and had faith and kept pushing and is lungs are almost at 100%. God works in wonderful ways! You are so amazing! Keep your head up!
definitely not comparing here but my cousin had a rare cancerous brain tumor. His wish was to get a Rottweiler, which he named Sheba, after getting Sheba-Sheba would sleep with him and NEVER leave his side. In a matter of 3 months, the tumor could not be detected on an MRI, and all blood counts were normal.
The good thing about austria (Im austrian :)) is that everyone is an organ donor by law :) I think you have to sign a document if you don't want to be a donor - but if you don't do anything like that you are automatically a donor - that's a much better solution I think :) Btw. I love your videos! You always make me smile :)
I've watched a couple of your videos and they're about so much more than cystic fibrosis. Your kindness, soulfulness, and inner light are the reasons I keep coming back to watch more. Your videos mean a lot to people so please continue making them.
I suffer from chronic pancreatitis and I'm hospitalized anywhere from 2 weeks- 3 months. There's a 12 year old boy with CF who was in the room across from me and we started writing each other notes and holding them up to the window for the other to read. He typically doesn't have anyone visit including parents. We actually have now had nurses move one of our rooms so we're across from the other because it helps to not feel so lonely.
Cimfam_919 aww, that is touching, knowing your nurses understand your wanting to be near each other to pass your time by "passing notes". I pray there comes a time when you won't need to be hospitalized as often and for so long. And prayers and best wishes for your CF friend.
IMChrysalis aww I'm sorry... Yeah I have some conditions as well but if someone can use my eyes or skin or ANYTHING I'm all for it! Who knows maybe you can donate something too?
Mm. Some good ideas...I'd more likely be an eye recipient, I have retinopathy and cataracts, one of 600 connective tissue diseases, fibromyalgia blah blah blah... I've even survived cancer~blessedly, without radiation or chemo because I have bad kidneys. (Yay!) I've thought about leaving myself to science... I have a LOT of medical conditions, I'll have to figure out who to do that to... LOL You've given me some homework, thanks!
IMChrysalis aww you've been through a lot for sure! But you're still here! ♡♡♡ They can even use tissue, bone marrow, ligaments, tendons, veins, muscles, etc. Definitely read up on it.... donating is a great way to save at least one other life.
I have Cystic Fibrosis as well. I'm turning 15 in April and I was diagnosed at age 2, but I'm just now really trying to get involved with the CF community. It is so fantastic to really be able to see others doing all the things I have to do. Like "OMG SHE IS DOING THE VEST.... I DO THE VEST" "GOSH ISN'T PULMYZYME GREAT" "HOSPITAL TIME WEEEE" Despite the struggles you and I go through, your videos give me hope for a future where I can live with CF. Where CF is simply a normal part of me to be worked with; not rejected and denied. Where I CAN go to college, and I can chase my dreams. My body may have limits but my heart is limitless. Over Christmas and New year's I was unfortunately hospitalized and missed a lot of great time with my family BUT This semester I started taking my first college class as a freshman in highschool (we have dual enrollment in Florida), I got my black belt in taekwondo, and I'm training for national qualifiers! All with some of the lowest lung function of my life. I am grateful for the people around me. Even the boys on my team are always checking up on me during practice as I sit and cough my guts out after a hard set. Or they'll motivate me to eat more as they devour the whole buffet XD. It is difficult but CF will never stop me. You're videos have cheered me up through a rough few weeks. I know you will WIN in your life. We will never be defeated. Thanks for doing what you do. God bless.
I also have CF too and I'm turning 15 soon in January, I was diagnosed when I was 1 and Im in the middle as well I dont need a transplant yet, but I still can't live a normal life 😭😷
Thank you for sharing. Yesterday was my dad's two year double lung transplant anniversary. My dad suffered from pulmonary fibrosis, which progressed quite rapidly in in late 2013 and early 2014. There isn't a day that goes by that I don't give the Lord thanks for giving me more time with my dad. Stay strong and positive. You will be blessed. In honor of my dad's donor, I became an organ donor myself.
A friend of mine passed away during high school, Asher was given to fly but he did have viable kidneys. His kidneys were given to a wonderful man with three beautiful children who still have a father today because of him
+The Frey Life god bless that you get healthier, you are very strong emotionally and this comes through over the videos and also god bless your husband and for your health
I'm new to your channel and have really been enjoying learning about C.F. and seeing how the two of you interact. What a beautiful and blessed union. I never wanted to donate my organs before but after watching your videos I decided to become a donor and I just finished signing up through the link you provided. I hope that if my life were to end that someone else could benefit in some way from my organs. Be blessed and thanks for being such an inspiration!
Mary you handle this dreadful disease with such courage and grace. I know you don't have a choice but you could be hiding away in a corner crippled with fear and grief. God has blessed you with a wonderful mate and sounds like your family are there for you too.....you just deal with it and it is wonderful to watch you.
I am 23 and because of my chronic illness am wheelchair bound...in a feeding tube and oxygen and living in a nursing home. I admire how you use you make the most of each day and stay so positive. It is great you have UA-cam as an outlet. Thanks for the hard work because I know it is hard to do when you are sick and low on energy. And Peter you are awesome and Mary you are so lucky to have found someone like him who is there for you in the good and bad times. Wish there were more people like you. I would really love a picture of you guys and Ollie to hang up in my room with your signature to help me to keep fighting. I love you paintings Mary and it is importing me to want to do it. Thanks for replying to my comments it means a lot!
My friends mom was hit by a car while biking, she was a donor and helped 42 people. Her family is very proud that their mom and wife helped so many people. Please be a donor.
Thank you for taking the time to film this!! Having CF I already know all the technical stuff but everyones journey is so unique and I love seeing others stories! Keep on fighting! We are all in this fight together.
I stumbled on your channel after looking up port care (because we were surprisingly never taught in nursing school). Even though I technically have background "book knowledge" of CF, your videos continuously teach me something new. Thank you for sharing your story and providing insight from your point of view. Your vlog never fails to inspire me, and I couldn't have found it at a better time. I was diagnosed with an autoimmune disease almost 2 years ago and seeing you tackle CF with such grace and perseverance has been extremely helpful as I transition into beginning my nursing career. God bless!
This is another fabulous video and story your strength amazes me! I have asthma and know a fraction of what it is like to cough like that and you just blow my mind with your positivity and wonderful spirt!
Thank you for making videos! You are very inspirational 😀 My 5 month old son was diagnosed with cf when he was one week old. We are currently in the hospital and he is on IV antibiotics. I have been watching your videos a lot and seeing you live your life gives me hope for my son! Thank you😀
I finally got around to watching this one. I'm so glad you discussed organ donation! My fiancé and I are both on the registries for organ and tissue donation as well as bone marrow. It's such an important cause to me. My best friend died of a stroke when we were 23 and his heart was transplanted the same day he passed and saved another man's life. It was so inspiring to see his life, which was cut short, making such a huge difference for another person and their family. It was the biggest ray of light in that awful week for those of us who were close to him.
hopefully one day scientists will be able to create artificial lungs and other organs so that the waiting lists could possibly be shorter and less of rejection complications.
@@courtneylee464 That is a mechanical ventilator, used when the lungs are unable to work on their own. I have COPD and Alpha 1 deficiency, I was on a "Ventilator" for five days while in the ICU. CF patients as well as myself, there is lung tissue damage. meaning less gas exchange 02 and C02. My COPD was escalated by smoking as well as breathing in asbestos, graphite dust as well as other irritants as an Electrician for 40 years. CF is genetic exclusively. I hope they find a way to use some type of cellular therapy to cure it. Lastly, kudos to this young Woman for showing us her life living with CF.
When I was having all my surgeries, I was on the floor where a lot of the CF patients were, I became very good friends with a few of them, I feel thankful to have known them!!
Thx for answering the common cf questions. I used to be an organ donor but due to my declining health I've removed myself from the donor registry which saddens me. I've been a recipient of a cornea and this November I will be receiving 2 cadaver vertebrates in my cervical spine... and in 2016 I will be receiving more cadaver vertebrates in my lumbar spine. So, thx for those who are organ donors!
Thank you for this video. My 9 yr old has cf. Today she had the hard coughing in the morning and was crying while doing her neb treatments. She hates her treatments and it's a fight everytime. Right now shes fighting a bacteria and has had to increase her treatments and taking antibiotics. Your video calmed her down. Made her feel like shes not alone. Thank you.
you should really make shirts that say "Don't worry I'm not contagious" on the front and "Ask me about my lungs" on the back. as an asthma patient who spent recent months coughing hard in public I def got used to the staring
I had a coughing fit once while trying to pay for something because of my asthma, everyone was staring at me and I couldn't breathe or talk it was horrible :(
I am 18 years old and I have autoimmune hepatitis, IBS, chronic migraines, and other unknown health issues. I have been seeing specialized doctors for the past two years or so. I came across your page this morning and I am so in love with your channel or your little family. although we may not be on the same level of "illness" I guess... I feel very encouraged by you! you have an amazing story. it is amazing to see how positive and trusting you are in the Lord with all of this. it has definitely been very difficult for my family and I these past couple of years, but He has put so many wonderful people in my life to keep me encouraged! Thank you for all that you do! God bless.
I do not have CF, but when having lung infections I have had to cough hard and long. And I know that tiny moment of panic when you just keep coughing even though you are asphyxiating, and it's not something you ever get used to. Scary indeed... Stay strong
+Kim G I read it somewhere. I was also a bone marrow donor and got a health update questionnaire and got a return letter saying they removed me from the registry because lupus disqualifies me.
This just puts into perspective of how blessed i am. My life would be so different if I was in your shoes. I'm just glad you're showing how strong you are and that life can be great no matter what obstacles you have to face. I'm praying for you and your family.
hello :) just leaving a comment to thank you and let you know how much I enjoy your channel !!! you are both so joyful and fun to watch and informative about your journey with CF , I have a 4 year old daughter with CF and we live in Australia :) thank you both again for just being awesome :) :) so happy that I am now part of the Frey life family :)
I feel like you would be an amazing teacher. Very calm voice and you break things down so simply! I don't have CF but I enjoy your everyday vlogs. Hard to find positive, kind, and such sweet true Christians. Fav couple! :)
I'm a liver transplant patient I had my transplant when I was 4 I am now 16 and still see a multitude of doctors hahaha.Great video Mary love the Frey life!!
What a great video, Mary! I'm actually a genetic counselor, and I think you are a great ambassador for CF patients! If you (and Peter and Ollie!) ever want to talk to some genetic counseling students and share your story, I have connections at Brandeis where I graduated from (in Waltham). They love to have families like yours come in so the students can see what these conditions really look like, rather than just facts in a textbook. Meeting real (and awesome!) people with genetic conditions was such an important part of my education as a GC. So thank you for speaking so openly about it so that all sorts of people, whether in the medical community or not, can put a face to this disease. I recently started watching and I love love love your videos on a medical and personal level! :-) I hope it doesn't weird you out to say that I think you are such a beautiful person, inside and out!
+shortysax Thank you so very much for your kind and encouraging words. That means a lot when you say that I am a great ambassador for the CF community. thank you again for your sweet words!
I begin my placement on a Respiratory Medicine Ward in hospital next week, and I was doing a little research into some of the patients I will be lucky enough to care for and discovered your channel. I have been watching non stop for a few days now, you are an inspiration and I will be humbled and honoured to meet anyone who is as strong and brave as you! Keep being you because you truly are inspirational
I found your videos when I was studying for my nursing exam, but I learned so much and enjoyed your videos that I've kept watching for months! I can't wait to watch the new vlog each day!!
also- when you start to cough hard when Peter is talking, I love how respectful he is when he just patiently waits then picks right up when you are done!! He is awesome!!
one of your videos just randomly popped up as a suggested videos. I had no idea what CF was. Thanks for the education... You're in my thoughts Mary. I love how happy and positive you are with everything. Your family is an inspiration.
I cannot imagine your daily life, but you take it all in stride. It makes me realize how many people complain about such silly little things. You have made me want to sit back and enjoy life more. Thank you!
I also have a lung disease...but not nearly as severe as CF. I have Bronchiectisis. My mom told me that I had whopping cough as a child, and when I mentioned that to my lung Dr. he had me take a CT and then diagnosed me with Bronchiectasis. I have enlarged bronchi in my lungs and they will never contract, so I also just started using the Vest for treatments. Used to be when I would get a cold, I would cough and have nonproductive coughs, and my lungs would get infected because I could not expel the mucus in my lungs. I have only been on the Vest for a day and a half, and I can already feel a difference. I am able to cough up some of the mucus as the Vest shakes it loose. I am loving that. So nice to watch you and your husband in the videos.....
I just found your channel. I love watching your videos . I'm 17 and I have cf! You give me so much motivation . You are always so positive ! I watch your videos every day now !
+Ashley lovesyou Hi Ashley! Thanks for saying hi and introducing yourself! Keep up the good work of taking care of your body the best way that you know how! I'm so glad we can all cheer each other on in this journey! Hang in there!
My cousin was an organ donor and he very tragically passed away about seven years ago, when he was 17 years old. He donated his heart that day and saved someone's life! And also was able to donate some of his skin to someone else. I miss him so much, and that day was the worst day of my life, but it makes me happy and proud to know that he made someone and their family have the best day of their lives by being an organ donor.
The reason I found your channel was because my boyfriend Andrew, has Cf and I want to understand him in every way possible I can. We're still young, so his CF is very under control & taken care of. He's "healthy" right now and hopefully for a little while. Your vlogs help me understand him in a whole other light and I want to thank you so much for letting us all see your life and showing us what you have to challenge every single day if it weren't for you two, I wouldn't know how to care for Andrew (Like Peter does for you) or know much even about it. You are so strong, and I love you guys so much. I just can't even tell you how much you have helped me. Thank you. 💚
Hi Mary :) i never really comment, but i must say that i love your vlogs and tags! I'm a med student and i find fascinating how much i get to know about CF from a CF patient!! Because we never get to see our patients perspective!!! Keep up the good work! I totally admire you!! :)
OMG I got Goosebumps watching your "Draw our life" video! I just about cried when you mention Jimmy. My niece's husband is Jimmy and I am forever grateful that the Lord brought him to her life. She got baptized and is a Christian now. Jimmy is the best thing that ever happened to her and her 10 year old son from a bad previous relationship! Jimmy and Jessica had their first married life baby boy Mason. She gets Enoch Bubba (Envy from the Bible and Bubba after her cat The Big Bubaloo who died as she was pregnant!) Mash is a happy addition an Enoch is an amazing big brother. I am so proud!
Hi Mary! This is my very first comment. I have been watching the Frey Life now for a couple a months or so, and love love love watching you and Peter. Its so funny because I feel like I know you guys, watching you is like seeing an old friend lol, crazy as it sounds. I just want you to know that I have found so much strength from watching the vlogs. You are truly an inspiration to me! I suffer from Crohns disease an immune disorder that mainly affects the digestive system. So even though I don't have CF I still feel like we have a lot in common. Attitude is everything and I feel like Peter and you have the best attitude anyone could have and the love of Christ certainly shines through you both. Love you guys, and thank you for your encouragement, you don't know how much your helping people, even people that don't have CF. Keep doing what your doing! God Bless you both
I've said it once and I'll say it till I'm blue in the face. You are so strong! I don't know how you do it, but I admire that you can live a normal life with CF. I didn't know about CF until I saw your channel. Thank you for opening my eyes. I'm glad to be apart of your journey! Cette vidéo est magnifique! Je vous aime et vous êtes si gentil! :D Keep up the amazing work!
I have been subscribed to your channel for a while now and i just want to thank yourself and Peter for doing UA-cam.. c.f. has affected 5 of my family members which have all sadly passed.. You make me feel like my aunt is still around. I cry and laugh along with you and I cannot put into words how inspiring you are! All my love, keep breathing 💙💜
My friend with CF recently passed away after her new lungs rejected. She was able to donate her eyes. Its really amazing she was able to give someone else the gift of sight. Your voice is so similar to hers, its really soothing.
My sister posted this on her FB. So I watched it. I was diagnosed with CF when I was 7 months old, and with Diabetes at 5 years. I'm 31 now. Let me tell you its so good to hear that other people can relate to my struggle. Especially that part where you mentioned not being sure if you're going to start breathing again when your brain tells you too. lol It IS terrifying. I've even blacked-out (just momentarily) a handful of times in recent years because of coughing so hard.
I know that feeling. I've talked to patients with lung disease often about not panicking. Now I have stage 4 COPD and I get that same cough. No matter how much you know you shouldn't panic, your body wants that air. A moment of fear is natural. We don't beat ourselves up for it because it's our basic biology.
I want to thank you for opening up to the world about your life and health. I have medical conditions but they're not the same as you but I do deal with chronic pain every day along with headaches and most the time I don't feel the same as other people but after watching your video it helps to show me that there are others still enjoying life even with their struggles with health. You have helped so many by becoming a UA-camr and I want you to know you are so beautiful💙💜💚💛
I just came along to your channel the other day. But I want to say I am so happy I did you are such a tropper. I am also happy because you have been giving me some information on this terrible disease. My Niece and my youngest nephew both have CF and with us being new to everything on cf and going through the journey not knowing what the next steps etc are. You have been an enlightment. Preparing us for what could happen what we may have to do and what they struggle through ! thank you so much for everything!
I just love the way you talk about all this. I don’t know how to express it but I’m just so impressed by you. I never really felt mentally ready to find out more about fellow CF patients and I recently started to get into contact more. You make me feel so much better about myself just by being yourself. I think it’s very wise you’re not sharing your FEV1. I feel like it’s such a personal piece of information. I also recognize the different ways people react to the coughs and just the disease generally. Thank you for sharing all this. Just know it means a lot to me!
I have not been able to play sports since I was 16. Impact would be life threatening for me. I even use a pillow on my belly to guard from seat belts injuries. Great Q&A by the way.
I can't play sports well either (I'm 10) I usually cough a lot and it hurts my heart that's why I can only do sports in gym class, that kids are even rougher with me than the other kids because "I need to be less weak" or "I'm too babyish"
my friend got a lung transplant last year...it went well but he had a stroke after and died in december. I am so happy that you are fairly healthy and are fighting cf. I hope that when/if you have a lung transplant it goes well xx
I really enjoyed learning more about you in this video :) I don't really make videos or have subscribers but I have thought about doing a video about cilliary dyskenesia to post on my facebook wall or something because I know people want to understand, but it gets exhausting trying to explain everything. Not related but those lights above your bed are very cute!!
What a worthwhile vlog. CF life expectancy continues to improve. Your attitude is awe inspiring. Big props to your parents, I'm sure. While I am not a religious person (recovering Catholic) I can appreciate and respect the comfort your faith gives to you. You are adorable. I wish you continued joy in life.
Hello! I'm a new follower. I'm the mom the a 2 year old CFer. I learned about you guys from the CFF website. Can't wait to follow your journey. Stay strong cyster!!
+Ashlea Choate Hi There! Thanks for saying hi and introducing yourself! Keep up the good work of taking care of your sweet little one! I am so thankful that my parents helped me learn how to care for my body as I was growing up, and now I am an adult and I am glad to have the tools to be able to keep this body going :) Hang in there! And please tell your daughter that we say HI!
Thank you for doing this video! I'm a nursing student, and currently learning a little about CF. I'm so glad I stumbled across your video. It definitely helped me understand CF better coming from someone who is going through it. As a fellow believer, I find great encouragement from your faith and perseverance through these hard times. You seem like a lovely person and I know that God will continue to work in you and through your life story. I hope you are doing well!
I really admire the fact that you don’t disclose raw numbers-everyone is different, and...they are your numbers-plus it’s so easy for others with the same condition to compare-well that’s my experience anyway-it’s not fair/reasonable/appropriate to compare yourself to others-even though you may have the same condition, everyone’s body reacts differently to what may be (could be) the exact same “raw” numbers-in other words, one person may have the same FEV1 as you, but they maybe struggling so much more (and conquering)-or they maybe doing swimmingly well! It’s so INDIVIDUAL!
Mary it's so beautiful to watch this with you saying you know God will give you the strength and the grace to deal with transplantation, and seeing exactly that He has in your newest videos. You are a wonderful influence of positivity in my life, so thank you ❤️ life is hard with a chronic illness but we can do it!
It is the 6-month trikafta-versiry for Mary when I first watched this video. Watching young Mary answer these questions with a hope that there would be a modification drug that would treat her mutations is chilling. It is also amazing how 3 years before her transplant evaluations she was able to trust that God would allow them to make the right decision which unknowingly to her meant moving their whole life to North Carolina. The faith and hopeful prayers in this video have truly paid off and it is amazing to be able to look back on.
Love this video I have type 1 diabetes so I can relate in some ways having a chronic illness that you have to deal with daily ! You’re so strong and brave and love your happy positive attitude. You’re inspiring
You are an inspiration... Your ministry is making a difference for people. I can see the light of Jesus in you. Thank you for making your life available to us all. May the Lord Bless you/your husband and your ministry
Thank you SO much for vlogging about cf! My best friend has cf and won't talk about it. I know he has the vest, a port, and a lot of meds (he's left creon at my house). I'm sure your journeys can't be that different. This has been so helpful for me. I don't know what I should and shouldn't say, but naturally I want to help and show I care. This has given me my own baseline on how I approach the subject. Thank you so much :) you are a wonderful person!
Watching this video makes me realize how much i take my health for granted..i type this while smoking a cigarette, and seeing and hearing about your cough makes me mad at myself..i love your outlook on things and your so strong. God Bless You.
Love your videos and your positivity. I learn so much from you not only cf but also enjoying live and every moment of it and loving what i am doing. Thank you for that!
I admire you and your husband. You two are simply adorable and seem to be such haapy up beat people :) you have a much better attitude than most people who don't have to deal with the challenges you face every day. You both are inspirational :) don't ever change!!! Here's wishing you and your husband a bright, wonderful, amazing future together. Sending you love and good health prayers *hugs*
Mary, your are amazing to share all this helpful information to so many people. I love you so much in your positive and happy thoughts and always with a beautiful smile. :-) Good Job on this Mary!!!!! and Peter I'm sure you edited this Q & A to make it even more perfect. So thank you for your hard work too! by the way, I love the lights set up behind your bed, so festive!! and Ollie boy is soooo very cute in the background so very content, comfortable and cozy. He is such a love and precious companion. thanks again for this Q & A I learned even more. and also, I truly believe in organ donation, as I have a brother in law and my husbands cousin whom both received a double lung transplant. Love and hugs to the 3 of you, see you tomorrow!!
Thanx for teaching me about Cystic Fibrosis. I admire your positivity. I have other helth problem and i sometimes find it hard to stay positiv. But you are really inspireing to me!
hello my name is aj and i also have a service dog his name is ace. i like the videos you post. my service dog is for PTSD and i go through the same things you do when you go out in public. keep fighting the battle you are amazing.
I'm so sorry you have to deal with this crap! I thought I had bad lungs! We just learned about CF today in school. I actually found your channel through your dollar tree videos. Love your channel, your such a high spirited, happy person! Love you! Just remember, whatever you may have, do not let it define you!
Your videos make me think about my friend in kindergarten who had cystic fibrosis. I was so young, I didn't understand how very sick she was. She used to come to school with an IV in her arm with a cast. I never really thought much of it, I just enjoyed her company. She sadly passed away in the first or second grade. Her funeral was the first time I remember seeing my dad cry. I was too young to understand what had happened, but now that I'm older, I think about her and it makes me feel sad, but also grateful that I knew her and that we were able to be friends. I will never forget you Christi Bates. You were a good friend.
That's so sad!
🙁
my friend died from cf last year...i know how you feel
facemonkey13 im sorry for your loss :(
So sorry for your loss.
I feel like you would be a good middle school teacher. Idk why but you look fun.
My mothers lungs went to a gentleman with CF! He is a wonderful person. He has done things he could not have done before the transplant. Thank you for sharing this with us!
Oh my goodness! I'm so glad to hear that you are able to celebrate something good amidst the sadness of not having your mom with you anymore. Thank you for sharing that with us!
+The Frey Life Of course! It's what has gotten me through the hard days! You are so inspirational! Keep your light shining!
I am medical student studying CF and I wanted to see the patients' point of view. So I watched several of your videos and I have to say that your possitivity surely inspires thousands of patients to stay optimistic and generally everyone to appreciate life!!
stay strong !!!!
Thank you so much for studying to help me and other patients we all appreciate you
Can we please take a minute to appreciate how incredibly beautiful Mary is and without a stitch of makeup seriously Mary your complexion is amazing! Your so beautiful inside and out and such an inspirational person!
+Vanessa Madame Butterfly Awe, that is very sweet of you
+The Frey Life :-)
You are so pretty. I pray the
Lord will heal you one day.
You know he is in control.
Just keep looking up that is where your help will come from God Bless you both
I'll tell you what is contagious, your laughter.
I'll keep you in my thoughts and prayers.
Jen's Life best comment read all day! She puts me in a great mood. I feel like she's a great model for kids. She doesn't feel bad for herself, but she recognizes how we are all different.
Well, thanks. See I have diabetes and she makes me realize I can fly when I think I can't walk. I'm only 36 and 3 years ago I lost my eyesight (legally blind) thanks to cataracts. I also have PCOS and achalasia among many other issues. If she can lead an upbeat life with what she has I realize so can I. She is a role model to me as well.
My best friend has CF and a few months ago his lung function dropped from 72% to 59%.. But within a few weeks it got up to 70%. He kept praying everyday and had faith and kept pushing and is lungs are almost at 100%. God works in wonderful ways! You are so amazing! Keep your head up!
definitely not comparing here but my cousin had a rare cancerous brain tumor. His wish was to get a Rottweiler, which he named Sheba, after getting Sheba-Sheba would sleep with him and NEVER leave his side. In a matter of 3 months, the tumor could not be detected on an MRI, and all blood counts were normal.
...he refused all medical treatments, besides pain meds.
+Kyra Elizabeth Wow that is amazing! Dogs are amazing with helping, they make us happy and help make it easier to push through it!
Kyra Elizabeth
The good thing about austria (Im austrian :)) is that everyone is an organ donor by law :) I think you have to sign a document if you don't want to be a donor - but if you don't do anything like that you are automatically a donor - that's a much better solution I think :)
Btw. I love your videos! You always make me smile :)
I've watched a couple of your videos and they're about so much more than cystic fibrosis. Your kindness, soulfulness, and inner light are the reasons I keep coming back to watch more. Your videos mean a lot to people so please continue making them.
I suffer from chronic pancreatitis and I'm hospitalized anywhere from 2 weeks- 3 months. There's a 12 year old boy with CF who was in the room across from me and we started writing each other notes and holding them up to the window for the other to read. He typically doesn't have anyone visit including parents. We actually have now had nurses move one of our rooms so we're across from the other because it helps to not feel so lonely.
Cimfam_919 aww, that is touching, knowing your nurses understand your wanting to be near each other to pass your time by "passing notes". I pray there comes a time when you won't need to be hospitalized as often and for so long. And prayers and best wishes for your CF friend.
Cimfam_91
Wakemewhenits Over
Wakemewhenits Over
I'm an organ donor (have been since age 17 & I'm 34 now).
Your courage and ability to laugh through life is uplifting ♡
I have medical conditions that make me ineligible to donate... T.T
IMChrysalis aww I'm sorry... Yeah I have some conditions as well but if someone can use my eyes or skin or ANYTHING I'm all for it!
Who knows maybe you can donate something too?
***** absolutely correct!
Mm. Some good ideas...I'd more likely be an eye recipient, I have retinopathy and cataracts, one of
600 connective tissue diseases, fibromyalgia blah blah blah... I've even
survived cancer~blessedly, without radiation or chemo because I have
bad kidneys. (Yay!) I've thought about leaving myself to science... I
have a LOT of medical conditions, I'll have to figure out who to do that
to... LOL You've given me some homework, thanks!
IMChrysalis aww you've been through a lot for sure! But you're still here! ♡♡♡ They can even use tissue, bone marrow, ligaments, tendons, veins, muscles, etc.
Definitely read up on it.... donating is a great way to save at least one other life.
I have Cystic Fibrosis as well. I'm turning 15 in April and I was diagnosed at age 2, but I'm just now really trying to get involved with the CF community. It is so fantastic to really be able to see others doing all the things I have to do. Like "OMG SHE IS DOING THE VEST.... I DO THE VEST" "GOSH ISN'T PULMYZYME GREAT" "HOSPITAL TIME WEEEE"
Despite the struggles you and I go through, your videos give me hope for a future where I can live with CF. Where CF is simply a normal part of me to be worked with; not rejected and denied. Where I CAN go to college, and I can chase my dreams. My body may have limits but my heart is limitless.
Over Christmas and New year's I was unfortunately hospitalized and missed a lot of great time with my family BUT
This semester I started taking my first college class as a freshman in highschool (we have dual enrollment in Florida), I got my black belt in taekwondo, and I'm training for national qualifiers! All with some of the lowest lung function of my life. I am grateful for the people around me. Even the boys on my team are always checking up on me during practice as I sit and cough my guts out after a hard set. Or they'll motivate me to eat more as they devour the whole buffet XD. It is difficult but CF will never stop me.
You're videos have cheered me up through a rough few weeks. I know you will WIN in your life. We will never be defeated.
Thanks for doing what you do. God bless.
Danica Murray awesome! Keep it up!!!
Danica Murray I’m very young to have cf I’m not going to say my age but it all seems so unfair to have cf when all my friends don’t. Advice?
I have cystic fibrosis as well and I really am grateful for this amazing community I've c.f. sense I was a few weeks old
I also have CF too and I'm turning 15 soon in January, I was diagnosed when I was 1 and Im in the middle as well I dont need a transplant yet, but I still can't live a normal life 😭😷
I have CF too I am 14 and I am doing very well. Do you take similar medicines like symdeko, azithromycin, prevacid, or albuterol?
Thank you for sharing. Yesterday was my dad's two year double lung transplant anniversary. My dad suffered from pulmonary fibrosis, which progressed quite rapidly in in late 2013 and early 2014. There isn't a day that goes by that I don't give the Lord thanks for giving me more time with my dad. Stay strong and positive. You will be blessed. In honor of my dad's donor, I became an organ donor myself.
A friend of mine passed away during high school, Asher was given to fly but he did have viable kidneys. His kidneys were given to a wonderful man with three beautiful children who still have a father today because of him
You're so strong and positive! God bless you and your husband in this journey!
+Daniela Reis Thank you so much!
+The Frey Life god bless that you get healthier, you are very strong emotionally and this comes through over the videos and also god bless your husband and for your health
I'm new to your channel and have really been enjoying learning about C.F. and seeing how the two of you interact. What a beautiful and blessed union. I never wanted to donate my organs before but after watching your videos I decided to become a donor and I just finished signing up through the link you provided. I hope that if my life were to end that someone else could benefit in some way from my organs. Be blessed and thanks for being such an inspiration!
+sweetsweetbonnie Thank you SOOO much for becoming an organ donor!
A year later and I'm still here watching your channel faithfully. You are both in my constant prayers. Huggles to Ollie. 😀❤
Mary you handle this dreadful disease with such courage and grace. I know you don't have a choice but you could be hiding away in a corner crippled with fear and grief. God has blessed you with a wonderful mate and sounds like your family are there for you too.....you just deal with it and it is wonderful to watch you.
I am 23 and because of my chronic illness am wheelchair bound...in a feeding tube and oxygen and living in a nursing home. I admire how you use you make the most of each day and stay so positive. It is great you have UA-cam as an outlet. Thanks for the hard work because I know it is hard to do when you are sick and low on energy. And Peter you are awesome and Mary you are so lucky to have found someone like him who is there for you in the good and bad times. Wish there were more people like you. I would really love a picture of you guys and Ollie to hang up in my room with your signature to help me to keep fighting. I love you paintings Mary and it is importing me to want to do it. Thanks for replying to my comments it means a lot!
My friends mom was hit by a car while biking, she was a donor and helped 42 people. Her family is very proud that their mom and wife helped so many people. Please be a donor.
My little cousin was just diagnosed with this and I had no idea what it was. Thank you so much for your video, it was very helpful in understanding
Thank you for taking the time to film this!! Having CF I already know all the technical stuff but everyones journey is so unique and I love seeing others stories! Keep on fighting! We are all in this fight together.
I stumbled on your channel after looking up port care (because we were surprisingly never taught in nursing school). Even though I technically have background "book knowledge" of CF, your videos continuously teach me something new. Thank you for sharing your story and providing insight from your point of view. Your vlog never fails to inspire me, and I couldn't have found it at a better time. I was diagnosed with an autoimmune disease almost 2 years ago and seeing you tackle CF with such grace and perseverance has been extremely helpful as I transition into beginning my nursing career. God bless!
You've given us quite the education on CF! I had no idea that it affected more than the lungs! I'll be praying for you guys!
I am a nurse, and the information was fantastic! Thanks a million. You are an inspiration.
Any one else really want to cuddle ollie in the background?? 🐩🐩🐩🐶🐩🐩🐩
This is another fabulous video and story your strength amazes me! I have asthma and know a fraction of what it is like to cough like that and you just blow my mind with your positivity and wonderful spirt!
I love how you are so positive, and live everyday to the fullest!
Thank you for making videos! You are very inspirational 😀 My 5 month old son was diagnosed with cf when he was one week old. We are currently in the hospital and he is on IV antibiotics. I have been watching your videos a lot and seeing you live your life gives me hope for my son! Thank you😀
I finally got around to watching this one. I'm so glad you discussed organ donation! My fiancé and I are both on the registries for organ and tissue donation as well as bone marrow. It's such an important cause to me. My best friend died of a stroke when we were 23 and his heart was transplanted the same day he passed and saved another man's life. It was so inspiring to see his life, which was cut short, making such a huge difference for another person and their family. It was the biggest ray of light in that awful week for those of us who were close to him.
hopefully one day scientists will be able to create artificial lungs and other organs so that the waiting lists could possibly be shorter and less of rejection complications.
NotSoBrokenHearted that would be amazing
ummm, did you forget about the "Iron Lung" used to treat people with Polio?
@@courtneylee464 That is a mechanical ventilator, used when the lungs are unable to work on their own. I have COPD and Alpha 1 deficiency, I was on a "Ventilator" for five days while in the ICU. CF patients as well as myself, there is lung tissue damage. meaning less gas exchange 02 and C02. My COPD was escalated by smoking as well as breathing in asbestos, graphite dust as well as other irritants as an Electrician for 40 years. CF is genetic exclusively. I hope they find a way to use some type of cellular therapy to cure it. Lastly, kudos to this young Woman for showing us her life living with CF.
This video is so informative, and you're such a positive person. Also your accent is so nice :)
When I was having all my surgeries, I was on the floor where a lot of the CF patients were, I became very good friends with a few of them, I feel thankful to have known them!!
Thx for answering the common cf questions.
I used to be an organ donor but due to my declining health I've removed myself from the donor registry which saddens me.
I've been a recipient of a cornea and this November I will be receiving 2 cadaver vertebrates in my cervical spine... and in 2016 I will be receiving more cadaver vertebrates in my lumbar spine.
So, thx for those who are organ donors!
I've been waiting for this! Learned so much more, thank you for sharing your life with us! You did a great job.
Thank you for this video. My 9 yr old has cf. Today she had the hard coughing in the morning and was crying while doing her neb treatments. She hates her treatments and it's a fight everytime. Right now shes fighting a bacteria and has had to increase her treatments and taking antibiotics. Your video calmed her down. Made her feel like shes not alone. Thank you.
I knew absolutely nothing about CF before watching this video so thank you for sharing your story.
+Round2Ready Thanks for watching and becoming a part of The Frey Life Family!
you should really make shirts that say "Don't worry I'm not contagious" on the front and "Ask me about my lungs" on the back. as an asthma patient who spent recent months coughing hard in public I def got used to the staring
you don't even know how much i want that shirt (or hoodie)
I had a coughing fit once while trying to pay for something because of my asthma, everyone was staring at me and I couldn't breathe or talk it was horrible :(
I also have a lot of mucus and it makes me cough a lot and people always ask me if I'm sick, like no I just have asthma...
Ohhh the asthmatic cough. The amount of people who say you should go to a dr with that cough lol.
I want this!! I have asthma & bronchiectasis
I am 18 years old and I have autoimmune hepatitis, IBS, chronic migraines, and other unknown health issues. I have been seeing specialized doctors for the past two years or so. I came across your page this morning and I am so in love with your channel or your little family. although we may not be on the same level of "illness" I guess... I feel very encouraged by you! you have an amazing story. it is amazing to see how positive and trusting you are in the Lord with all of this. it has definitely been very difficult for my family and I these past couple of years, but He has put so many wonderful people in my life to keep me encouraged! Thank you for all that you do! God bless.
+thatbeautygirl15 Hi there! Thanks for saying hello and introducing yourself! Welcome! And thanks for coming to be a part of The Frey Life Family!
I do not have CF, but when having lung infections I have had to cough hard and long. And I know that tiny moment of panic when you just keep coughing even though you are asphyxiating, and it's not something you ever get used to. Scary indeed... Stay strong
That's great that you can still be an organ donor! I used to be but once I was diagnosed with lupus I didn't qualify anymore. God Bless you.
Hi, I was recently diagnosed with lupus too. I was unaware about not being able to donate. How did you find out this information ?
+Kim G I read it somewhere. I was also a bone marrow donor and got a health update questionnaire and got a return letter saying they removed me from the registry because lupus disqualifies me.
+teribabe58 Oh wow, that's good to know considering I am/was on the donation list. It's kinda upsetting. Thanks for the info !
Kim G
This just puts into perspective of how blessed i am. My life would be so different if I was in your shoes. I'm just glad you're showing how strong you are and that life can be great no matter what obstacles you have to face. I'm praying for you and your family.
hello :) just leaving a comment to thank you and let you know how much I enjoy your channel !!! you are both so joyful and fun to watch and informative about your journey with CF , I have a 4 year old daughter with CF and we live in Australia :) thank you both again for just being awesome :) :) so happy that I am now part of the Frey life family :)
I feel like you would be an amazing teacher. Very calm voice and you break things down so simply! I don't have CF but I enjoy your everyday vlogs. Hard to find positive, kind, and such sweet true Christians. Fav couple! :)
I'm a liver transplant patient I had my transplant when I was 4 I am now 16 and still see a multitude of doctors hahaha.Great video Mary love the Frey life!!
What a great video, Mary! I'm actually a genetic counselor, and I think you are a great ambassador for CF patients! If you (and Peter and Ollie!) ever want to talk to some genetic counseling students and share your story, I have connections at Brandeis where I graduated from (in Waltham). They love to have families like yours come in so the students can see what these conditions really look like, rather than just facts in a textbook. Meeting real (and awesome!) people with genetic conditions was such an important part of my education as a GC. So thank you for speaking so openly about it so that all sorts of people, whether in the medical community or not, can put a face to this disease. I recently started watching and I love love love your videos on a medical and personal level! :-) I hope it doesn't weird you out to say that I think you are such a beautiful person, inside and out!
+shortysax Thank you so very much for your kind and encouraging words. That means a lot when you say that I am a great ambassador for the CF community. thank you again for your sweet words!
I begin my placement on a Respiratory Medicine Ward in hospital next week, and I was doing a little research into some of the patients I will be lucky enough to care for and discovered your channel. I have been watching non stop for a few days now, you are an inspiration and I will be humbled and honoured to meet anyone who is as strong and brave as you!
Keep being you because you truly are inspirational
I found your videos when I was studying for my nursing exam, but I learned so much and enjoyed your videos that I've kept watching for months! I can't wait to watch the new vlog each day!!
also- when you start to cough hard when Peter is talking, I love how respectful he is when he just patiently waits then picks right up when you are done!! He is awesome!!
one of your videos just randomly popped up as a suggested videos. I had no idea what CF was. Thanks for the education... You're in my thoughts Mary. I love how happy and positive you are with everything. Your family is an inspiration.
I cannot imagine your daily life, but you take it all in stride. It makes me realize how many people complain about such silly little things. You have made me want to sit back and enjoy life more. Thank you!
+bearzhere Thanks! That means a lot!
On the high impact sports thingy....I would say falling down the steps might be considered a high impact sport. LOL...
+Green House Homestead haha, good point! Good thing I fell on my bum instead of my abdomen!
You have such a positive attitude and love that you are always smiling. God Bless Mary.
I also have a lung disease...but not nearly as severe as CF. I have Bronchiectisis. My mom told me that I had whopping cough as a child, and when I mentioned that to my lung Dr. he had me take a CT and then diagnosed me with Bronchiectasis. I have enlarged bronchi in my lungs and they will never contract, so I also just started using the Vest for treatments. Used to be when I would get a cold, I would cough and have nonproductive coughs, and my lungs would get infected because I could not expel the mucus in my lungs. I have only been on the Vest for a day and a half, and I can already feel a difference. I am able to cough up some of the mucus as the Vest shakes it loose. I am loving that. So nice to watch you and your husband in the videos.....
I just found your channel. I love watching your videos . I'm 17 and I have cf! You give me so much motivation . You are always so positive ! I watch your videos every day now !
+Ashley lovesyou Hi Ashley! Thanks for saying hi and introducing yourself! Keep up the good work of taking care of your body the best way that you know how! I'm so glad we can all cheer each other on in this journey! Hang in there!
My cousin was an organ donor and he very tragically passed away about seven years ago, when he was 17 years old. He donated his heart that day and saved someone's life! And also was able to donate some of his skin to someone else. I miss him so much, and that day was the worst day of my life, but it makes me happy and proud to know that he made someone and their family have the best day of their lives by being an organ donor.
The reason I found your channel was because my boyfriend Andrew, has Cf and I want to understand him in every way possible I can. We're still young, so his CF is very under control & taken care of. He's "healthy" right now and hopefully for a little while. Your vlogs help me understand him in a whole other light and I want to thank you so much for letting us all see your life and showing us what you have to challenge every single day if it weren't for you two, I wouldn't know how to care for Andrew (Like Peter does for you) or know much even about it. You are so strong, and I love you guys so much. I just can't even tell you how much you have helped me. Thank you. 💚
your faith so admirable. I've been raised in a religious house hold and I've never had such strong faith. good luck on the rest of your journey.
Hi Mary :) i never really comment, but i must say that i love your vlogs and tags! I'm a med student and i find fascinating how much i get to know about CF from a CF patient!! Because we never get to see our patients perspective!!! Keep up the good work! I totally admire you!! :)
Hearing you talk about Cystic Fibrosis makes my asthma attacks look better and better by comparison. I feel for you, girl.
+Saffron333 Awe, thanks for your empathy!
OMG I got Goosebumps watching your "Draw our life" video! I just about cried when you mention Jimmy. My niece's husband is Jimmy and I am forever grateful that the Lord brought him to her life. She got baptized and is a Christian now. Jimmy is the best thing that ever happened to her and her 10 year old son from a bad previous relationship! Jimmy and Jessica had their first married life baby boy Mason. She gets Enoch Bubba (Envy from the Bible and Bubba after her cat The Big Bubaloo who died as she was pregnant!) Mash is a happy addition an Enoch is an amazing big brother. I am so proud!
Mary and Peter-Your love of life and your attitude toward being positive is absolutely infectious. We love you!!!
Ollie chilling in the background 😂
Hi Mary! This is my very first comment. I have been watching the Frey Life now for a couple a months or so, and love love love watching you and Peter. Its so funny because I feel like I know you guys, watching you is like seeing an old friend lol, crazy as it sounds. I just want you to know that I have found so much strength from watching the vlogs. You are truly an inspiration to me! I suffer from Crohns disease an immune disorder that mainly affects the digestive system. So even though I don't have CF I still feel like we have a lot in common. Attitude is everything and I feel like Peter and you have the best attitude anyone could have and the love of Christ certainly shines through you both. Love you guys, and thank you for your encouragement, you don't know how much your helping people, even people that don't have CF. Keep doing what your doing! God Bless you both
+Melissa Gunn Thank you so much for your encouragement! And Thank you for choosing to be a part of The Frey Life Family!
I've said it once and I'll say it till I'm blue in the face. You are so strong! I don't know how you do it, but I admire that you can live a normal life with CF. I didn't know about CF until I saw your channel. Thank you for opening my eyes. I'm glad to be apart of your journey! Cette vidéo est magnifique! Je vous aime et vous êtes si gentil! :D Keep up the amazing work!
I just became an organ donor!!!!
+Maddie van Haaren THANK YOU SO MUCH!!!!!!!!!!!
Thank you
I have been subscribed to your channel for a while now and i just want to thank yourself and Peter for doing UA-cam.. c.f. has affected 5 of my family members which have all sadly passed.. You make me feel like my aunt is still around. I cry and laugh along with you and I cannot put into words how inspiring you are!
All my love, keep breathing 💙💜
My friend with CF recently passed away after her new lungs rejected. She was able to donate her eyes. Its really amazing she was able to give someone else the gift of sight. Your voice is so similar to hers, its really soothing.
+sarah everling I'm so sorry to hear that, but you are right, it's amazing she was able to give the gift of sight!
My sister posted this on her FB. So I watched it. I was diagnosed with CF when I was 7 months old, and with Diabetes at 5 years. I'm 31 now. Let me tell you its so good to hear that other people can relate to my struggle. Especially that part where you mentioned not being sure if you're going to start breathing again when your brain tells you too. lol It IS terrifying. I've even blacked-out (just momentarily) a handful of times in recent years because of coughing so hard.
You're a hero Mary
You are such a cheerful and a positive person. Stay strong 😊
I know that feeling. I've talked to patients with lung disease often about not panicking. Now I have stage 4 COPD and I get that same cough. No matter how much you know you shouldn't panic, your body wants that air. A moment of fear is natural. We don't beat ourselves up for it because it's our basic biology.
I want to thank you for opening up to the world about your life and health. I have medical conditions but they're not the same as you but I do deal with chronic pain every day along with headaches and most the time I don't feel the same as other people but after watching your video it helps to show me that there are others still enjoying life even with their struggles with health. You have helped so many by becoming a UA-camr and I want you to know you are so beautiful💙💜💚💛
I just came along to your channel the other day. But I want to say I am so happy I did you are such a tropper. I am also happy because you have been giving me some information on this terrible disease. My Niece and my youngest nephew both have CF and with us being new to everything on cf and going through the journey not knowing what the next steps etc are. You have been an enlightment. Preparing us for what could happen what we may have to do and what they struggle through ! thank you so much for everything!
Hi there! Thanks so much for saying hi and becoming a part of The Frey Life family!
You are welcome! I am glad to be able to be apart of the frey life family!
I just love the way you talk about all this. I don’t know how to express it but I’m just so impressed by you. I never really felt mentally ready to find out more about fellow CF patients and I recently started to get into contact more. You make me feel so much better about myself just by being yourself. I think it’s very wise you’re not sharing your FEV1. I feel like it’s such a personal piece of information. I also recognize the different ways people react to the coughs and just the disease generally. Thank you for sharing all this. Just know it means a lot to me!
I have not been able to play sports since I was 16. Impact would be life threatening for me. I even use a pillow on my belly to guard from seat belts injuries. Great Q&A by the way.
I can't play sports well either (I'm 10) I usually cough a lot and it hurts my heart that's why I can only do sports in gym class, that kids are even rougher with me than the other kids because "I need to be less weak" or "I'm too babyish"
I love your honesty and positivity! Keeps me wanting to watch you. Very pleasant and informative video.
I stumbled across your channel and you are truly inspiring and a joy to watch! God Bless you!
my friend got a lung transplant last year...it went well but he had a stroke after and died in december. I am so happy that you are fairly healthy and are fighting cf. I hope that when/if you have a lung transplant it goes well xx
I really enjoyed learning more about you in this video :) I don't really make videos or have subscribers but I have thought about doing a video about cilliary dyskenesia to post on my facebook wall or something because I know people want to understand, but it gets exhausting trying to explain everything.
Not related but those lights above your bed are very cute!!
What a worthwhile vlog. CF life expectancy continues to improve. Your attitude is awe inspiring. Big props to your parents, I'm sure. While I am not a religious person (recovering Catholic) I can appreciate and respect the comfort your faith gives to you. You are adorable. I wish you continued joy in life.
Hello! I'm a new follower. I'm the mom the a 2 year old CFer. I learned about you guys from the CFF website. Can't wait to follow your journey. Stay strong cyster!!
+Ashlea Choate Hi There! Thanks for saying hi and introducing yourself! Keep up the good work of taking care of your sweet little one! I am so thankful that my parents helped me learn how to care for my body as I was growing up, and now I am an adult and I am glad to have the tools to be able to keep this body going :) Hang in there! And please tell your daughter that we say HI!
+The Frey Life Thank you for that! Luckily she's been very healthy over all, and I'm so thankful for the advances in medicine and therapies :)
That's great news!
I love your positive, glowing attitude. God's love comes through you for sure.
Thank you for doing this video! I'm a nursing student, and currently learning a little about CF. I'm so glad I stumbled across your video. It definitely helped me understand CF better coming from someone who is going through it.
As a fellow believer, I find great encouragement from your faith and perseverance through these hard times. You seem like a lovely person and I know that God will continue to work in you and through your life story.
I hope you are doing well!
Thank you Mary Frey for your courage and daily determination.!
I really admire the fact that you don’t disclose raw numbers-everyone is different, and...they are your numbers-plus it’s so easy for others with the same condition to compare-well that’s my experience anyway-it’s not fair/reasonable/appropriate to compare yourself to others-even though you may have the same condition, everyone’s body reacts differently to what may be (could be) the exact same “raw” numbers-in other words, one person may have the same FEV1 as you, but they maybe struggling so much more (and conquering)-or they maybe doing swimmingly well! It’s so INDIVIDUAL!
Mary it's so beautiful to watch this with you saying you know God will give you the strength and the grace to deal with transplantation, and seeing exactly that He has in your newest videos. You are a wonderful influence of positivity in my life, so thank you ❤️ life is hard with a chronic illness but we can do it!
Thank you for explaining everything for someone that has not been around CF patients. I understand so much more. 💖
It is the 6-month trikafta-versiry for Mary when I first watched this video. Watching young Mary answer these questions with a hope that there would be a modification drug that would treat her mutations is chilling. It is also amazing how 3 years before her transplant evaluations she was able to trust that God would allow them to make the right decision which unknowingly to her meant moving their whole life to North Carolina. The faith and hopeful prayers in this video have truly paid off and it is amazing to be able to look back on.
Love this video I have type 1 diabetes so I can relate in some ways having a chronic illness that you have to deal with daily ! You’re so strong and brave and love your happy positive attitude. You’re inspiring
You are an inspiration... Your ministry is making a difference for people. I can see the light of Jesus in you. Thank you for making your life available to us all. May the Lord Bless you/your husband and your ministry
Thank you SO much for vlogging about cf! My best friend has cf and won't talk about it. I know he has the vest, a port, and a lot of meds (he's left creon at my house). I'm sure your journeys can't be that different. This has been so helpful for me. I don't know what I should and shouldn't say, but naturally I want to help and show I care. This has given me my own baseline on how I approach the subject. Thank you so much :) you are a wonderful person!
Watching this video makes me realize how much i take my health for granted..i type this while smoking a cigarette, and seeing and hearing about your cough makes me mad at myself..i love your outlook on things and your so strong. God Bless You.
Love your videos and your positivity. I learn so much from you not only cf but also enjoying live and every moment of it and loving what i am doing. Thank you for that!
Wow, this video was so informative. You are a very strong and positive young lady. I am quite enjoying you guys.
Your positivity is awesome and I love how you are able to trust in God through all the things you go through! I will be praying for you :)
I admire you and your husband. You two are simply adorable and seem to be such haapy up beat people :) you have a much better attitude than most people who don't have to deal with the challenges you face every day. You both are inspirational :) don't ever change!!! Here's wishing you and your husband a bright, wonderful, amazing future together. Sending you love and good health prayers *hugs*
Thank You for sharing The QA Vlog! I love your SMILE and LAUGH!
Mary, your are amazing to share all this helpful information to so many people. I love you so much in your positive and happy thoughts and always with a beautiful smile. :-) Good Job on this Mary!!!!! and Peter I'm sure you edited this Q & A to make it even more perfect. So thank you for your hard work too! by the way, I love the lights set up behind your bed, so festive!! and Ollie boy is soooo very cute in the background so very content, comfortable and cozy. He is such a love and precious companion. thanks again for this Q & A I learned even more. and also, I truly believe in organ donation, as I have a brother in law and my husbands cousin whom both received a double lung transplant. Love and hugs to the 3 of you, see you tomorrow!!
Thanx for teaching me about Cystic Fibrosis. I admire your positivity. I have other helth problem and i sometimes find it hard to stay positiv. But you are really inspireing to me!
hello my name is aj and i also have a service dog his name is ace. i like the videos you post. my service dog is for PTSD and i go through the same things you do when you go out in public. keep fighting the battle you are amazing.
I'm so sorry you have to deal with this crap! I thought I had bad lungs! We just learned about CF today in school. I actually found your channel through your dollar tree videos. Love your channel, your such a high spirited, happy person! Love you! Just remember, whatever you may have, do not let it define you!