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.

@SnoopytheGirl

8 жыл бұрын

That's so sad!

@dustmite723

8 жыл бұрын

🙁

@e3180

7 жыл бұрын

my friend died from cf last year...i know how you feel

@dansinst3400

7 жыл бұрын

facemonkey13 im sorry for your loss :(

@ainsleyjohnson2036

7 жыл бұрын

So sorry for your loss.

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!

@thefreylife

8 жыл бұрын

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!

@battyminxx2336

8 жыл бұрын

+The Frey Life Of course! It's what has gotten me through the hard days! You are so inspirational! Keep your light shining!

I feel like you would be a good middle school teacher. Idk why but you look fun.

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 !!!!

@Pastelcosplays21

6 жыл бұрын

Thank you so much for studying to help me and other patients we all appreciate you

I'll tell you what is contagious, your laughter. I'll keep you in my thoughts and prayers.

@MC4K

7 жыл бұрын

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.

@JensLife

7 жыл бұрын

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.

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!

@thefreylife

8 жыл бұрын

+Vanessa Madame Butterfly Awe, that is very sweet of you

@vanessamadamebutterfly5458

8 жыл бұрын

+The Frey Life :-)

@shirleybennett400

2 жыл бұрын

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 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.

@rousingtherelics

7 жыл бұрын

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.

@jeansmith1388

7 жыл бұрын

Cimfam_91

@jeansmith1388

7 жыл бұрын

Wakemewhenits Over

@jeansmith1388

7 жыл бұрын

Wakemewhenits Over

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.

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!

@luvableshortee

8 жыл бұрын

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.

@luvableshortee

8 жыл бұрын

...he refused all medical treatments, besides pain meds.

@makaylasmiles4723

8 жыл бұрын

+Kyra Elizabeth Wow that is amazing! Dogs are amazing with helping, they make us happy and help make it easier to push through it!

@jeansmith1388

7 жыл бұрын

Kyra Elizabeth

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.

@ainsleyjohnson2036

7 жыл бұрын

Danica Murray awesome! Keep it up!!!

@macyshafer7777

6 жыл бұрын

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?

@Pastelcosplays21

6 жыл бұрын

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

@farahelkatouri9204

5 жыл бұрын

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 😭😷

@andyherrick4644

5 жыл бұрын

I have CF too I am 14 and I am doing very well. Do you take similar medicines like symdeko, azithromycin, prevacid, or albuterol?

I'm an organ donor (have been since age 17 & I'm 34 now). Your courage and ability to laugh through life is uplifting ♡

@IMChrysalis

7 жыл бұрын

I have medical conditions that make me ineligible to donate... T.T

@JenniferFuchek

7 жыл бұрын

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?

@JenniferFuchek

7 жыл бұрын

***** absolutely correct!

@IMChrysalis

7 жыл бұрын

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!

@JenniferFuchek

7 жыл бұрын

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.

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!

@thefreylife

8 жыл бұрын

+Daniela Reis Thank you so much!

@laurabarnesathome

8 жыл бұрын

+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

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.

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.

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!

@thefreylife

8 жыл бұрын

+sweetsweetbonnie Thank you SOOO much for becoming an organ donor!

@TheBonnieLife

6 жыл бұрын

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 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

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.

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.

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.

@annathefirefist3232

7 жыл бұрын

NotSoBrokenHearted that would be amazing

@courtneylee464

5 жыл бұрын

ummm, did you forget about the "Iron Lung" used to treat people with Polio?

@FrannyWard

4 жыл бұрын

@@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.

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.

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.

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 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 am a nurse, and the information was fantastic! Thanks a million. You are an inspiration.

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

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!

I love how you are so positive, and live everyday to the fullest!

Any one else really want to cuddle ollie in the background?? 🐩🐩🐩🐶🐩🐩🐩

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 KZread 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!

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 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😀

You have such a positive attitude and love that you are always smiling. God Bless Mary.

Mary and Peter-Your love of life and your attitude toward being positive is absolutely infectious. We love you!!!

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.

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!!

I have been subscribed to your channel for a while now and i just want to thank yourself and Peter for doing KZread.. 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 💙💜

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 :)

This video is so informative, and you're such a positive person. Also your accent is so nice :)

Ollie chilling in the background 😂

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 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!

Thank you Mary Frey for your courage and daily determination.!

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 stumbled across your channel and you are truly inspiring and a joy to watch! God Bless you!

Thank you for explaining everything for someone that has not been around CF patients. I understand so much more. 💖

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!!

@katgolightly8816

8 жыл бұрын

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!!

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 KZreadr and I want you to know you are so beautiful💙💜💚💛

You are such a cheerful and a positive person. Stay strong 😊

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!

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 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

@epseltigth568

7 жыл бұрын

you don't even know how much i want that shirt (or hoodie)

@emmakathryn8118

7 жыл бұрын

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 :(

@emmakathryn8118

7 жыл бұрын

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...

@Emilyweasel2023

7 жыл бұрын

Ohhh the asthmatic cough. The amount of people who say you should go to a dr with that cough lol.

@mrss6187

5 жыл бұрын

I want this!! I have asthma & bronchiectasis

You're so positive about this all. You're so inspiring. Thank you for smiling and making the best out of life. Bless 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.....

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!! :)

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!

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!

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. 💚

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.

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.

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!!

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 !

@thefreylife

8 жыл бұрын

+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!

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!

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.

Wow, this video was so informative. You are a very strong and positive young lady. I am quite enjoying you guys.

Thank You for sharing The QA Vlog! I love your SMILE and LAUGH!

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.

@thefreylife

8 жыл бұрын

+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 love your honesty and positivity! Keeps me wanting to watch you. Very pleasant and informative video.

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 knew absolutely nothing about CF before watching this video so thank you for sharing your story.

@thefreylife

8 жыл бұрын

+Round2Ready Thanks for watching and becoming a part of The Frey Life Family!

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!

Thank you for sharing your story. I have learned so much from you. You are an inspiration.

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!

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!

I have Asthma, another chronic lung disease. I also occasionally get low blood sugar especially if I haven't eaten or eaten as much as I normally would. This was great video, Mary! Keep up the great vlogs!

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

@thefreylife

8 жыл бұрын

+Melissa Gunn Thank you so much for your encouragement! And Thank you for choosing to be a part of The Frey Life Family!

I am an organ donor, for sure! Thank you for this video. You answered a lot of questions I’ve not had the chance to ask. 🙂

Thank you my brother was diagnosed with cf at 2 and was in the hospital when he was ten on and off for a year he was supposed to die but after that year he got alkt better gained some wait and he us now 16 and doing much better the doctors we have are really our saviors

Hi Mary, I love how positive you are in your battle with CF... I am a Mother of a 31 year old Daughter who is also fighting the battle of having CF, But she had a really bad start as she was born nearly 3 months early, and was rushed to a better equipped Hospital, and hours after being born she had an emergency surgery, and was given a colostomy due to her intestines not being developed, and her lungs were not completely developed as well... and she was only 4 lbs. then she stayed in the Hospital for the first 6 months of her life, and had to have several surgeries, then as she got older but had failure to thrive, she needed a feeding G-tube during the night. (which each night I would have to put into her stomach through her nose and hook her up to the Kangaroo pump) and I had to do her chest PT's by hand then - 3 times a day, and the nebulizer 3 times a day, and tons of meds ect, then she ended up needing open heart surgery to close a hole in her heart. and had the colostomy done several times, as they would try to reattach her intestines and it wouldn't take, or it would rupture, which led to more and more surgeries... and then she had a permanent feeding tube put in, and removed a couple times, then she got a Mickey tube for a few years, then they removed it and let the opening heal closed... ect ect... and the Doctor told us that she would not make it to see age 3... Well I am Happy to say that she will be 31 in a couple weeks... But it has been a long rough road. not to mention I didn't have a car, and had to constantly take several buses to and from the Hospital, and I was only 19 and a Divorced single Mom with a 2 yr old other Daughter... when she was born, and so it was extremely hard on me, plus I never knew what CF was until she was born...But you are a true inspiration, and I wish I could have you inspire her, as she has very little fight left in her now...She fights to eat, and fights to take her meds and to do her treatments, and has no ambition. She is constantly in the Hospital as she refuses the port, and will not leave the Hospital with a pic line... So she stays there for weeks , even months at a time, then when they send her home, 4-5 days later she is going back in no matter if she is doing well enough to stay home or not... So I am not sure if she is just feeling more comfortable there and getting cared for instead of in her own apartment (which she chooses and doesn't want to come home and let us help her, as she is very stubborn) but she is a mere 75 lbs. and yet refuses to eat even when all you see is skin and bones... I try to tell her how worried I am about her health, and I try to talk to her about her health and eating, and taking her proper meds as being very important over and over again, but she just says... Yeah, with everything, but doesn't do the things she should be doing... and yet there are other like yourself, who in spite of having CF are out there trying to live life to the fullest... I know she gets tired and gets weak, especially when not eating, so I try to tell her that... well if you get better and get out of the Hospital we can go do fun things as to try and encourage her... but she is more about dwelling on every little pain, and says, I have CF and Diabetes, and I cant do this and I cant do that... Which I never raised her like that... I have 3 other Daughters without CF, and although she had health issues, I tried to treat them all the same and tried not to baby her, or make her feel different, or weaker ect... Sure when she wasn't doing good, I probably did, but now as an adult she has a "So called" boyfriend who only basically uses her, but he baby talks her, and so does his family and friends, so now she wants to be babied, and I do love her and understand she has her weak moments ect, but I also try to keep her strong in doing what she needs to do, and if she chooses to live alone, then she needs to cook for herself and eat, and cant let herself lose so much weight all the time... and that she needs to take her meds without a nurse there to hand them to her... ect... But I think if she seen how you are handling your CF, Then maybe it would inspire her to take better care of herself... I am at a loss as she refuses to listen to me, but then again who ever listens to their Mother right :) I must say, I am extremely proud of you and how you are handling your CF... and that you have such a great man by your side who helps you and loves you, and that is huge... I would love for you to send me a message, so I can send you her address, and phone number there at the Hospital, so maybe you could send her an inspiring letter, card, or maybe even a phone call from you... I think it would be good for her to have a positive outlook and know that there is a life outside of having CF... Thank you darling... Be well... God Bless

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.

You are adorable! I love when you said that you take the water because it is good for the body! I'm a pediatric pulmonary social work intern for the year and I found your videos because I wanted to learn more about CF before I went into the clinics. Thank you for sharing.

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.

love long videos from you, thanks for this! ♡

Dear, I admire you so much, you are incredible strong, you are such a positive person!

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.

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!

@thefreylife

8 жыл бұрын

Hi there! Thanks so much for saying hi and becoming a part of The Frey Life family!

@brittanymartin7594

8 жыл бұрын

You are welcome! I am glad to be able to be apart of the frey life family!

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!

@thefreylife

8 жыл бұрын

+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!

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.

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*

You are a very strong family. God bless you and your family. I hope that you have an amazing life!!!!!!!!!!!!!!!!!!!!!!!!

You are such a strong and positive soul!!! Peace to you!!!

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!!

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!!

this was such a great and informative video, you guys! i actually signed up to be a donor years ago and i too hope one day that if anything happens, i can continue on to help somebody else in need.

Loved this video and learning more about CF.

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!

@thefreylife

8 жыл бұрын

+bearzhere Thanks! That means a lot!

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 :)