There are going to be days that feel victorious, and there will be days that feel very hard. One thing that is for sure, when the hard days come, you’ve got to keep on pressing on. We are cheering for you guys as you press on! Thank you for cheering for us too- we feel it!
The Frey Life with me steroids is a love hate kinda thing I gain weight yet it helps me a lot I’m in. Low dose 2.5 ever day on high doses boy so many side effects but I’d rather that than be in so much pain they lower inflammation in my body
God Bless you both. I am 65 yr old and have COPD. I am on oxygen 24/7. Its hard getting around. I get so out of breath. I had to go to the grocery store this morning, (just for Walmart grocery pick up.. greatest thing ever !) but just getting dressed and driving to the store was hard. I caught myself saying Do what you think you can't do :) and I did! I admire you both your strength is amazing and the love you have for each other is special. Thank you for your videos.
Cindy Howe God bless you. We are the same age, and I also have COPD, diagnosed 3 years ago. We never realize how much we need our lungs until they don’t work properly. These guys are an amazing couple and shes so fortunate to have come from loving parents into a love filled marriage. My heart aches for them to be going through so much pain and sadness at such a young age. I also admire their strength and I’m thankful for their videos. Never give up 🙏
Good for you! I know exactly what you're going through. And I agree that Wal-Mart pick up is super. I keep thinking maybe I'll try one of those monthly subscription meals delivered to save even more energy. Best wishes to you.
Asking for prayers. I was just diagnosed with a very aggressive breast cancer. Testing and treatment plan not complete but it is going to be a battle on top of my other health problems.
I have been on steroids for over a year for my crappy lungs. (Not CF) I have gained 100lbs in a year. Steroids are terrible but the other side is death so I take them and push through. Love you guys, praying for strength and peace.
Mary every time I see you do PFT’s I don’t know how you do it. I don’t have major lung issues and when I do them I almost pass out. I can’t imagine how much harder it is for you. You are so strong and amazing. Praying 🙏🏻 for you feel better soon.
Jessica Heaton my hubby sees down a tunnel then hears a low distance voice that usually says mr Rapp are you ok. I don’t know how she does it standing up his are sitting down
I also don't know how you do it, Mary. I've never had to do one but easily imagine myself passing out. I agree that you are amazingly strong and I do cheer you on as I pray for you, knowing that God is amazing above all. Crying is a perfectly acceptable and reasonable emotion under these circumstances; just keep pressing on in the midst of the tears.
Try to relax the ending out, rather than bearing down, to keep from passing out. Switch gears at the end!! Bear down in the beginning and then try to relax it out using stomach muscles. It will help a little (hopefully) and keep you from coughing as much. I hope that helps you. Might be the opposite of what your therapist is telling you to do but try to ease it out the last couple seconds. Good luck.
I feel for both of you, but everyday I see your posts and how Mary suffers with her medical issues. I am sure you guys would not have it any other way, but my heart also goes out to Peter, and how he loves so unconditionally and never asks for anything, but just by Mary's side for support. Mary, I am sure you know this, but you have one of the best guys in the world. Peter, you are a very strong and caring young man and I wish Mary would feel better so both of you could live the lives you both deserve. Prayers to both of you.
I’ve been watching for several years and have never myself used the phrase “do what you think you can’t do”. Then yesterday, I had brain surgery. This phrase kept me going through the first part of recovery yesterday and through the night. At one point I was feeling alone and scared, just trying to sleep, and my roommate (a woman I had not spoken to and have not even seen yet), started talking to me about the most random of topics, until I was able to not focus on any of my 4 IVs or catheter or nasal stents and finally fall asleep. She made me do what I thought I couldn’t. I’m grateful for you guys for that sentiment.
You give me so much strength. My journey in the nursing home and my body's decline with my spina bifida and aging gets me so down sometimes. Then I watch your vlog and I see you press on through it all and it gives me the strength to do the same. I cry and I press on too. I love you guys.
I am so appreciative of your attitude(s) and ability to move forward (press on) through the bumps in the road. You two are an awesome couple and great motivators for both perspective and approach to life's daily challenges.
I can relate! I have Muscular Dystrophy and some days I'm good...somedays I cry...and I allow myself to cry. Then I dust myself off and keep going. Praying for you!
When Mary cries, I cry; and I think tears are a good thing. It's a needed release. It really seems like you have an awesome medical team. Sending hugs and praying your new regimen works. 💜
Omg I’m literally crying with you. You’re breaking my heart. You are one strong woman and a strong couple. So glad you have such an amazing husband to go through this journey with you. Just started watching your videos and I love you both so much and hold you both in my heart. Thanks for sharing your life with us. I think it’s a great thing you’re doing for people to understand what CF patients live like. I pray for your continued strength as you push through every day. God bless you both ❤️
"I press on toward the goal for the prize of the upward call of God in Christ Jesus." - Philippians 3:14 I thought of this verse when you talked about pressing on. God has this, and I pray for healing through Christ Jesus. We love you Mary and Peter (and Ollie boy too!).
Sorry Mary. Steriods suck! Permanently on them myself and yes, I have "moon face"....but necessary for Addison's type illness. I REALLY PRAY/HOPE you feel better and respond well to treatment!
@RemsQuills actually have pituitary issues....same outcome. No stress steriod (among other things). I hope you're under good control and everything ok. Thanks for the "hi there"!
I know you don’t feel like it, but you two are so inspirational. Not many would share their journey of a serious chronic illness but by doing so, you show us just how strong you are even on bad days and that the bad days don’t have to win. Prayers for both of you on this part of your journey.
I’m not 5 minutes in yet, but just want to say to you that I feel where you’re at; you aren’t alone! I don’t have CF but have chronic pain, chronic illness & stage 4 cancer, and it’s rare, but when I do cry it’s usually because I’m tired, and I keep crying on and off until I sleep it off. Keep your chin up, keep talking to your team, it’s their role to support you and find solutions/support you into positive trends.
I’ve been reading through some of the comments and just love that there are so many believers that can cry out to God on your behalf! What an amazing blessing! I am so sorry you’re having to go through this and trying this and that not really knowing if it’ll help or hurt! I was also thinking about how awesome it is to have Peter as your partner, Mary! I think a lot of husbands would not be very helpful emotionally but Peter always seems to be a rock for you to lean on! You are both really strong in your relationship with Christ and that makes all the difference in the world!! 🙏🙏🙏💕😘
I cry each time, then I pray! I don't have CF, you're the one I know with CF, I do have a chronic illness, thank you for your faith, and your willingness to share, you're an inspiration to me!
It's so hard to hear you cry. I don't even know you, but it made me tear up. I cannot imagine what you are dealing with, but from watching your videos, I can tell you are strong. Your positive outlook is so inspiring. You are so sweet!
Sometimes the tears are because we feel the genuine care and concern for those in health care profession. When it happens to me, I'm usually caught off-guard by the tears. Love and prayers... Strong and brave you are. Both of you.
one of my 9 chronic illnesses is emphysema and just got out of a the hospital doing IV's 24 hours ago due to infections again and my PFTs went down again for the 3rd time i know how it can be hard to get around, get stuff down, do stuff for you're stuff, etc. just cry it out because crying shows everyone how strong you :)
In my opinion there one thing to do:"GO MARY!!!!" keep fighting, I can imagine that is hard but keep going keep fighting and most important keep being you
God Bless you both, Mary & Peter.....these are such trying times for you.....I pray to God that this will turn around for you soon.... I admire your attitudes....your hope and faith are unwavering, even at such difficult times as these. I wish I could reach out and make you better....you both remain in my daily thoughts and prayers..sending love and hugs !
Hang in there Mary. God is with you and will help u get through this. I don't know what I would do, if I did not have God on my hide helping me. Thank you Jesus for being there with us through the rough days. 😇🙏💕
Again I'll say - these vlogs must be so useful to transfer all this detailed information between family - save repetitive phone calls at least. Lots going on with you both right now yet you stay so positive & take it on the chin...your amazing.
Hi Mary, im a swimming teacher and i learned today that one of my swimmers has CF. She is 5 years old and you’d barely know except the cough. Im trying to teach her how to breathe when doing freestyle and with the cough its quite hard for her. Just wondering if there is anything you can think of that i could do which may help her? Eg should i be letting her rest a bit and catch her breath? A particular breathing technique which may help? Eg fast or slow breaths? Or would you suggest changing how i help her? Or perhaps Is there any tips you could give which help you control a cough say for a 20m swim? So you can get from one end of the pool to the other? I know your having a tricky time, but perhaps you can help me help her?
Wow I just met you guys (through you tube of course) and I fell in love with the both of you. The song “Lean on me” comes to mind when I see your videos. I’m hoping (like everyone else) your able to conquer this horrific disease. Lots of Love your way from California
I've been in your court of "What can and will we do next?" Medically, it is hard. I feel/felt like I wanted to give up..... keep in mind your day to day/month to month will be different. I LOVE YOU guys.you put a smile on my face, when I'm in pain or sad, or just wanting something to watch. KEEP UP THE FIGHT! I believe in you! God is on your side, he is helping you and you just don't know it! Xx ❤❤❤
Keep pressing on Mary! I have cystic fibrosis too and I know how discouraging it can get ! You can do it ! And take care of yourself ❤️ I’ve been on prednisone since 2016 and I’ve gained almost 30 pounds... yes body wise it was good but wow did it ever damage my mental health... Any time I go off prednisone my lung function drops and you can see the infection regrowing. I can see it in how my music forms... I hope you get some relief soon ! You definitely deserve some good times ! ❤️
Mary, I am so sorry that you have been having such a rough time. You and Peter are such an inspiration in the way you always have positive attitudes no matter what you are dealing with... And as always... you do it together.💗
Sending you love Mary and Peter. Its an ordeal. Trying to be brave, walking the eternal line of risk vs benefit, trying to enjoy the simplest victories and moments. Your life is beautiful. Its hard to see how this disease steals your energy...I admire the courage you and your caretakers exhibit. I hope you feel better soon. Its a real challenge.
There are so many of us out here, I imagine, who have never commented but follow you every day. We care for you And Peter so much and thank you for sharing your joys and your struggles. ❤️
Hey guys... I sent you guys a DM on instagram but I just wanted to say how much your vlogs have been helping me through my own lung struggles. I recently had a positive breakthrough in my health and have had a few good days. I really pray things will look up for soon too. Keep pressing on. Love from Saint Lucia 💙
I’m sorry you are having a difficult time Mary. I’m not going through anything medically, but this year has been difficult. Seeing how strong you are trying to be in the middle of a storm is encouraging.
Mary it can be so overwhelming having multiple health issues and being on so many antibiotics. You will cry, you will laugh, cry some more and laugh some more. Just hang in there and keep fighting because we are conquerors. I have been dealing with too much medical stuff with my arm in constant pain and it really never ends. I love life and everything about it even the bad days. I have my love who cheers me up and holds me close and helps so much. It is so hard on our partners as they are our primary care givers and they feel so helpless. I know it must be the same for Peter. So keep on keeping on and embrace the joy and take it one day at a time.
Sorry things are going rough. Prayers for you. Understand it's hard to be chatty when feeling bad. But I'm sure the person taking your BP was just trying to be cheerful. Remember as you you like to always try to smile and laugh everyday! Prayers.
You two are always in my prayers. I will try to check back every few day. You two actually inspire this old man. God Bless you and thanks so much for sharing your journey with us. 🙏🏻🙏🏻🙏🏻🙏🏻😔😔😔😔
Oh Mary, I want so badly to be able to turn things around for you. I know we don’t know each other personally, but you guys are such genuine people and sharing your journey with us has touched me in my heart. As the body of Christ we share in each other’s joys, sorrows and suffering. We are united in Christ and so we are family. I guess the only way to help you both carry this cross is to continue praying and so be assured that I will. I heard a wise priest preach about how when the apostles panicked in the boat because of the storm, Jesus wanted for them to realize that even if He had not awoken and calmed the storm it would have been enough for them that He was there with them in the storm tossed boat. It is a hard lesson for me to remember also but hearing it put that way kept me focused in my latest storm and it was different this time. I hope that y’all can feel the prayers of your brothers and sisters in Christ and feel His presence with you in this storm. Know to that I pray for your families too. I am a mother of three and have 7 grandchildren so I know how your parents feel. My son has had seizures since 3rd grade and he is now 40 yrs old. I can’t say it has been easy but it has been a gift in that it brought us all closer to Christ and each other. Sorry this is so long but I wanted you to know how much the three of you are loved and how God is using you both in so many ways. May the peace of Christ be with you all.
Mary you don't have to be so strong all the time.. God has this you let him take that burden... remember he has got you this far he will not let you fail..
My hugs are with you guys for healing, comfort and easier breathing for Mary. I love you three, you are such a team with such comfort and love for each other, that alone, is the best healer. My love and hugs to the three of you, see you tomorrow!
One thing about pulmonary function is that it can actually swing with your emotions. People don't commonly think about their breathing being impacted by their emotional state even when they know everything else from blood pressure to body temp can have an emotions aspect people tend to think breathing is breathing and breathing is not really effected by anything but exercise and that is not always the case. We see this a lot with chronic lung patients and will actually note if we get a change in numbers from one time to another if we are also seeing them with a change in their emotional status so its taken into consideration. If patients are down or unhappy about something we see a shift in their tests and if then see them later when they have bounced back emotionally a couple weeks later - their numbers are better too, and very often nothing different has been done. Most people seem to know that when someone is upset getting them to breathe differently can help them out for some reason for many years we never thought of it the other way around and that maybe emotional state is impacting how well or not well they are breathing. Sure its just a number and that is a mantra people use to deal with a change in a test but in the back of the mind we know that if the numbers did not matter we would not be gathering them. We noticed of extended periods that if a person started getting lower numbers and was worried about that it affected them emotionally and added more things for them to be worried about. If those same people could get a turn around in tehir emotional status, often with cutting out routine pfts for a while so that it was not something they worried about or felt depressed over and then did measure them once again when they were more stable emotionally and were in an emotional place closer to the way they were when we had gotten their baseline numbers we usually see improvement. Of course that is not the only thing that can impact your pulmonary function but keeping in the back of your mind about where you are feeling emotionally may actually explain some lower numbers. Of course we hear from patiens when they are sick or have had problems develop and that they are expecting numbers to point that way, but we have many that will tell us before a test that they have been feeling down all day or for a few days and expect we will see that in their numbers and we usually do. And in the same way we have people coming in and say they feel physically better so expect good numbers and we have those telling us they are feeling good emotionally and we might notice that. We even have those that feel physically sick but are emotionally on the up side and so we do note that because the "up" emotion might the reason for a good PFT when the physical symptoms tell us their numbers should have dropped. And crying can have a lot of detriment to your pulmonary system at least if you have been crying around the time of testing. When you cry enough that you feel short of breath its better to wait on doing any tests for at least 4 hours as there are many many body functions that are disrupted from crying - from blood pressure to hormone production and release and many things inbetween. Most people if they have a hard cry will notice that they are out of breath for some period of time after they stop, some experience headaches, or some feel very tired afterwards and so on. We ran into the same issue with home care vs hospital we were able to work out with a lot of push back from me. Given that when she was and at a children's hospital it was really bucking the system to have her at home rather than in the hospital for most of every year. It was just not the children's hospital policy or procedure to have kids on home care for antibiotic therapy and I had to actually drive into the city with her blood draws everyday cause they wanted daily labs run. Later when she outgrew a children's' hospital and we move to an adult hospital they not only did not have an issue with it - they encouraged it and even made it so that I could drop her labs off at a local lab near where we lived and that lab would forward the result to the hospital as they did not mandate that there lab had to run the tests. The biggest problem we have had with antibiotics, since she takes antibiotics daily - either orally or by IV is that over time either the antibiotic is not really stopping the infection process that we want it too and she starts getting shunt infections again or she is on an antibiotic long enough that she gets sensitive to it. We did finally get to the point where she was going to have to be in the hospital for her antibiotics as everything they needed to give she was sensitive to in some way. And so having to us an antibiotic that had caused issues before meant a hospital stay and that could be a very protracted affair. After a lot of talking about it we decided that the better bet was to use the time she had to be in the hospital anyway to also use that opportunity to desensitize her to the few antibiotics that they had a way to do that. It meant an ICU stay rather then just a regular floor but it meant that once through this there would be a few antibiotics that she could again use safely at home. Not something I would recommend everyone doing as it was a tough haul having to be given stuff you knew would make you sick while getting the body to cope with it but the fact that it would mean she could be at home next time around made it worth it to her.
Always sucks to be sick, sucks even more with a chronic lung disease. You are both so blessed to have each other and Ollie and you know that you are blessed with each other❣ No one is prepared for bad lung function results☹
Hi Guy`s , I am sorry about your numbers being down , but they will come back up. I have arthritis and when ever I get a really bad flare up I have to either be in pain or take prednisone , not the best drug to take m but it does get the inflammation down and in your case in will help clear your air ways. Glad it is a low dose , other wise you might be house cleaning at 2 AM ! LOL Good luck with getting your feeding tube straightened out once and for all. Well guy`s all my best , say hi to Ollie for me , and just seeing Peter`s love for you Mary tells so much. Take care and have a safe trip home , and thanks for the video. Gary
I just have to say I absolutely adore it when you two lean your heads against each other. It's very symbolic of marriage (& relationships in general) you are both sturdy enough to keep leaning over on your own but if you get tired you can rest on your partner and know they won't let you fall. Also, Mary I am so sorry to hear you aren't feeling better. I will keep both you and Peter in my prayers. 💚
Hi Mary and Peter and Olly l just started watching your Blogs omg you are the sweetest couple This is what true Love is about so refreshing to see l have become a great Fan and no matter what Keep on fighting this battle my hope and wishes is someday soon you get fresh lungs to breathe in the meantime your Love strength and endurance and Hope together makes things abit brighter actually alot brighter and Hope for so many others as well.
Hello Mary, so sorry you aren’t doing well recently. I so admire your courage and your attitude, you are an inspiration. The situation with your bone marrow is very unfortunate, please have your hematologist check for multiple myeloma. It’s better to be tested and have it ruled out. Hugs!
Mary, Peter and Ollie you are in my prayers and hope you feel better re soon. You are such an inspiration to a lot of people. God bless you and your family. Love all the way from South Africa! CHARLOTTE
I continue my prayers for you Mary and Peter....and sending all my love from Pennsylvania. Thank you for inspiring me through your authenticness and your faith. Love you both :)
Feel better Mary my heart breaks at the way you feel all my love to you and peter a, and peter you are an awsome care giver to your beautiful wife Mary keep the faith 🌻🌻🌻🌻🌻🌻🌻🌻🌻🌞🌞🌞
Praying for you Mary and Peter ! I understand the tears there are just days that despite your best efforts of pushing on it's just overwhelming, I struggle with health issues and autoimmune disease and I understand but I know the Lord is with us he bottles each tear they are precious to him. I am praying for your healing, wisdom for your doctors and that the Lord will give you strength in this journey. On a lighter note I love when Peter says girl you've got issues LOL I got issues to Mary and Peter and without Jesus I don't know how I would make it. Love you both God bless I will keep you in prayer
So sorry about your numbers and not feeling well. Wising the best for you guys. Side note... I live for the Ollie clips at the end lol he's so sweet :)
There are going to be days that feel victorious, and there will be days that feel very hard. One thing that is for sure, when the hard days come, you’ve got to keep on pressing on. We are cheering for you guys as you press on! Thank you for cheering for us too- we feel it!
Love you guys!! Continuing prayers!! 💜
The Frey Life Mary your too pretty to cry
The Frey Life with me steroids is a love hate kinda thing I gain weight yet it helps me a lot I’m in. Low dose 2.5 ever day on high doses boy so many side effects but I’d rather that than be in so much pain they lower inflammation in my body
I can’t imagine your journey ,but I will keep 🙏🏻 and looking for updates!💖💙💙 God is with you!✝️
The Frey Life steroids. I take every day for lupus. My legs swell. I will pray they help you. Sometimes they make me feel like super woman 🤣
God Bless you both. I am 65 yr old and have COPD. I am on oxygen 24/7. Its hard getting around. I get so out of breath. I had to go to the grocery store this morning, (just for Walmart grocery pick up.. greatest thing ever !) but just getting dressed and driving to the store was hard. I caught myself saying Do what you think you can't do :) and I did! I admire you both your strength is amazing and the love you have for each other is special. Thank you for your videos.
Cindy Howe God bless you. We are the same age, and I also have COPD, diagnosed 3 years ago. We never realize how much we need our lungs until they don’t work properly. These guys are an amazing couple and shes so fortunate to have come from loving parents into a love filled marriage. My heart aches for them to be going through so much pain and sadness at such a young age. I also admire their strength and I’m thankful for their videos. Never give up 🙏
Cindy Howe if you are on the EAST COAST. You can have your food delivered to you by PEAPOD. 🙂
We're so thrilled to see our Grocery Pick-up service helping your everyday routine go smoother, Cindy! 😄❤
Good for you! I know exactly what you're going through. And I agree that Wal-Mart pick up is super. I keep thinking maybe I'll try one of those monthly subscription meals delivered to save even more energy. Best wishes to you.
Hugs!!!
☹️sending prayers it’s hard to watch someone’s health deteriorate makes me so sad.Just keep swimming 🐠🐟
Asking for prayers. I was just diagnosed with a very aggressive breast cancer. Testing and treatment plan not complete but it is going to be a battle on top of my other health problems.
I am a cancer survivor. I just said a prayer for you. I hope you are completely healed.
Prayers for our amazing God to cleanse you of your cancer!
kathy parten praying for you ! I have metastatic breast cancer for four years now . Stay strong 💪🏼
kathy parten holding you in light. Hugs.
Oh, Kathy, im so sorry! You most certainly are in my prayers ❤️❤️❤️
I have been on steroids for over a year for my crappy lungs. (Not CF) I have gained 100lbs in a year. Steroids are terrible but the other side is death so I take them and push through. Love you guys, praying for strength and peace.
Mary every time I see you do PFT’s I don’t know how you do it. I don’t have major lung issues and when I do them I almost pass out. I can’t imagine how much harder it is for you. You are so strong and amazing. Praying 🙏🏻 for you feel better soon.
Jessica Heaton my hubby sees down a tunnel then hears a low distance voice that usually says mr Rapp are you ok. I don’t know how she does it standing up his are sitting down
I also don't know how you do it, Mary. I've never had to do one but easily imagine myself passing out. I agree that you are amazingly strong and I do cheer you on as I pray for you, knowing that God is amazing above all. Crying is a perfectly acceptable and reasonable emotion under these circumstances; just keep pressing on in the midst of the tears.
It looks rough! I never had to do any but it sounds really difficult
Try to relax the ending out, rather than bearing down, to keep from passing out. Switch gears at the end!! Bear down in the beginning and then try to relax it out using stomach muscles. It will help a little (hopefully) and keep you from coughing as much. I hope that helps you. Might be the opposite of what your therapist is telling you to do but try to ease it out the last couple seconds. Good luck.
Babette McCurdy worth a try👍
I feel for both of you, but everyday I see your posts and how Mary suffers with her medical issues. I am sure you guys would not have it any other way, but my heart also goes out to Peter, and how he loves so unconditionally and never asks for anything, but just by Mary's side for support. Mary, I am sure you know this, but you have one of the best guys in the world. Peter, you are a very strong and caring young man and I wish Mary would feel better so both of you could live the lives you both deserve. Prayers to both of you.
11:43--an inspiration to how loved ones treat loved ones
I’ve been watching for several years and have never myself used the phrase “do what you think you can’t do”. Then yesterday, I had brain surgery. This phrase kept me going through the first part of recovery yesterday and through the night. At one point I was feeling alone and scared, just trying to sleep, and my roommate (a woman I had not spoken to and have not even seen yet), started talking to me about the most random of topics, until I was able to not focus on any of my 4 IVs or catheter or nasal stents and finally fall asleep. She made me do what I thought I couldn’t. I’m grateful for you guys for that sentiment.
You give me so much strength. My journey in the nursing home and my body's decline with my spina bifida and aging gets me so down sometimes. Then I watch your vlog and I see you press on through it all and it gives me the strength to do the same. I cry and I press on too. I love you guys.
I am so appreciative of your attitude(s) and ability to move forward (press on) through the bumps in the road. You two are an awesome couple and great motivators for both perspective and approach to life's daily challenges.
I can relate! I have Muscular Dystrophy and some days I'm good...somedays I cry...and I allow myself to cry. Then I dust myself off and keep going. Praying for you!
When Mary cries, I cry; and I think tears are a good thing. It's a needed release. It really seems like you have an awesome medical team. Sending hugs and praying your new regimen works. 💜
Omg I’m literally crying with you. You’re breaking my heart. You are one strong woman and a strong couple. So glad you have such an amazing husband to go through this journey with you. Just started watching your videos and I love you both so much and hold you both in my heart. Thanks for sharing your life with us. I think it’s a great thing you’re doing for people to understand what CF patients live like. I pray for your continued strength as you push through every day. God bless you both ❤️
"I press on toward the goal for the prize of the upward call of God in Christ Jesus." - Philippians 3:14 I thought of this verse when you talked about pressing on. God has this, and I pray for healing through Christ Jesus. We love you Mary and Peter (and Ollie boy too!).
Sorry Mary. Steriods suck! Permanently on them myself and yes, I have "moon face"....but necessary for Addison's type illness. I REALLY PRAY/HOPE you feel better and respond well to treatment!
@RemsQuills actually have pituitary issues....same outcome. No stress steriod (among other things). I hope you're under good control and everything ok. Thanks for the "hi there"!
I know you don’t feel like it, but you two are so inspirational. Not many would share their journey of a serious chronic illness but by doing so, you show us just how strong you are even on bad days and that the bad days don’t have to win. Prayers for both of you on this part of your journey.
Stay strong Mary & Peter. Sending gentle hugs to you, all the way from Kent UK x ❤🙏
I’m not 5 minutes in yet, but just want to say to you that I feel where you’re at; you aren’t alone! I don’t have CF but have chronic pain, chronic illness & stage 4 cancer, and it’s rare, but when I do cry it’s usually because I’m tired, and I keep crying on and off until I sleep it off. Keep your chin up, keep talking to your team, it’s their role to support you and find solutions/support you into positive trends.
Just feel the need to give you a *hug*, Puppy's
I’ve been reading through some of the comments and just love that there are so many believers that can cry out to God on your behalf! What an amazing blessing! I am so sorry you’re having to go through this and trying this and that not really knowing if it’ll help or hurt! I was also thinking about how awesome it is to have Peter as your partner, Mary! I think a lot of husbands would not be very helpful emotionally but Peter always seems to be a rock for you to lean on! You are both really strong in your relationship with Christ and that makes all the difference in the world!! 🙏🙏🙏💕😘
I cry each time, then I pray! I don't have CF, you're the one I know with CF, I do have a chronic illness, thank you for your faith, and your willingness to share, you're an inspiration to me!
It's so hard to hear you cry. I don't even know you, but it made me tear up. I cannot imagine what you are dealing with, but from watching your videos, I can tell you are strong. Your positive outlook is so inspiring. You are so sweet!
Sometimes the tears are because we feel the genuine care and concern for those in health care profession. When it happens to me, I'm usually caught off-guard by the tears. Love and prayers... Strong and brave you are. Both of you.
Home sick from work today and marathoning Frey Life videos- makes me feel just a little bit better! Love you guys!
You have every reason to cry . You are such a warrior .Wishing you a happy tomorrow👍🙋
one of my 9 chronic illnesses is emphysema and just got out of a the hospital doing IV's 24 hours ago due to infections again and my PFTs went down again for the 3rd time i know how it can be hard to get around, get stuff down, do stuff for you're stuff, etc. just cry it out because crying shows everyone how strong you :)
In my opinion there one thing to do:"GO MARY!!!!" keep fighting, I can imagine that is hard but keep going keep fighting and most important keep being you
Awwwww Baby Girl DONT CRY KEEPING U AND YOUR AMAZING HUBBY IN MY NIGHTLY PRAYERS.
Seeing you cry breaks my heart. You are so strong coping with what you are going through ♥️
Mary, you are amazing! Peter, you are so kind and compassionate. Think of you often and pray for you. Take care of each other.
God Bless you both, Mary & Peter.....these are such trying times for you.....I pray to God that this will turn around for you soon.... I admire your attitudes....your hope and faith are unwavering, even at such difficult times as these. I wish I could reach out and make you better....you both remain in my daily thoughts and prayers..sending love and hugs !
Hang in there Mary. God is with you and will help u get through this. I don't know what I would do, if I did not have God on my hide helping me. Thank you Jesus for being there with us through the rough days.
😇🙏💕
God be with y’all. Cheering you both On! I am in the middle of testing and sometimes I just cry but press on. God is with us every step of the way ❤️
Mary when you cry,I cry with you.I pray for you stay strong.And know God has you! 🙏🙏
Again I'll say - these vlogs must be so useful to transfer all this detailed information between family - save repetitive phone calls at least. Lots going on with you both right now yet you stay so positive & take it on the chin...your amazing.
Hi Mary, im a swimming teacher and i learned today that one of my swimmers has CF. She is 5 years old and you’d barely know except the cough. Im trying to teach her how to breathe when doing freestyle and with the cough its quite hard for her.
Just wondering if there is anything you can think of that i could do which may help her? Eg should i be letting her rest a bit and catch her breath? A particular breathing technique which may help? Eg fast or slow breaths? Or would you suggest changing how i help her? Or perhaps Is there any tips you could give which help you control a cough say for a 20m swim? So you can get from one end of the pool to the other?
I know your having a tricky time, but perhaps you can help me help her?
Wow I just met you guys (through you tube of course) and I fell in love with the both of you. The song “Lean on me” comes to mind when I see your videos. I’m hoping (like everyone else) your able to conquer this horrific disease. Lots of Love your way from California
I've been in your court of "What can and will we do next?" Medically, it is hard. I feel/felt like I wanted to give up..... keep in mind your day to day/month to month will be different. I LOVE YOU guys.you put a smile on my face, when I'm in pain or sad, or just wanting something to watch. KEEP UP THE FIGHT! I believe in you! God is on your side, he is helping you and you just don't know it! Xx ❤❤❤
Keep pressing on Mary! I have cystic fibrosis too and I know how discouraging it can get ! You can do it ! And take care of yourself ❤️ I’ve been on prednisone since 2016 and I’ve gained almost 30 pounds... yes body wise it was good but wow did it ever damage my mental health...
Any time I go off prednisone my lung function drops and you can see the infection regrowing. I can see it in how my music forms...
I hope you get some relief soon ! You definitely deserve some good times ! ❤️
gentle hugs around you guys and sending prayers always
It was so hard seeing you like this... but you’re a warrior and you’ll win this battle! Praying for you!!!
You are very brave Mary. I will keep you in my prayers. God bless from Canada
The struggle is real but your on the God Squad. It's a winning team. I'll cheer you guys on all the way!! More prayers going up!
Mary, I am so sorry that you have been having such a rough time. You and Peter are such an inspiration in the way you always have positive attitudes no matter what you are dealing with... And as always... you do it together.💗
Mary your always in my thoughts and prayers. I think of you and Peter often. Love you both
Sending you love Mary and Peter. Its an ordeal. Trying to be brave, walking the eternal line of risk vs benefit, trying to enjoy the simplest victories and moments. Your life is beautiful. Its hard to see how this disease steals your energy...I admire the courage you and your caretakers exhibit. I hope you feel better soon. Its a real challenge.
There are so many of us out here, I imagine, who have never commented but follow you every day. We care for you And Peter so much and thank you for sharing your joys and your struggles. ❤️
Peter is a rock. Truly a rock. (my husband is a rock also). BUT....there are good strong men out there. Bless them all.
Peter, I can see the pain in your face for sweet Mary... praying for you both..
Hey guys... I sent you guys a DM on instagram but I just wanted to say how much your vlogs have been helping me through my own lung struggles. I recently had a positive breakthrough in my health and have had a few good days. I really pray things will look up for soon too. Keep pressing on. Love from Saint Lucia 💙
I’m sorry you are having a difficult time Mary. I’m not going through anything medically, but this year has been difficult. Seeing how strong you are trying to be in the middle of a storm is encouraging.
Mary it can be so overwhelming having multiple health issues and being on so many antibiotics. You will cry, you will laugh, cry some more and laugh some more. Just hang in there and keep fighting because we are conquerors. I have been dealing with too much medical stuff with my arm in constant pain and it really never ends. I love life and everything about it even the bad days. I have my love who cheers me up and holds me close and helps so much. It is so hard on our partners as they are our primary care givers and they feel so helpless. I know it must be the same for Peter. So keep on keeping on and embrace the joy and take it one day at a time.
Mary, I’m so sorry! My heart hurts for you!! You’re in my prayers!
Stay strong, you are really an inspiration to me. You are both amazing!!
Sorry things are going rough. Prayers for you. Understand it's hard to be chatty when feeling bad. But I'm sure the person taking your BP was just trying to be cheerful. Remember as you you like to always try to smile and laugh everyday! Prayers.
You two are always in my prayers. I will try to check back every few day. You two actually inspire this old man. God Bless you and thanks so much for sharing your journey with us. 🙏🏻🙏🏻🙏🏻🙏🏻😔😔😔😔
Mary you are so strong. We are all here for you. 💜
And we cry with you, Mary. We love y’all and pray for you daily. 💕💕💕
Oh Mary, I want so badly to be able to turn things around for you. I know we don’t know each other personally, but you guys are such genuine people and sharing your journey with us has touched me in my heart. As the body of Christ we share in each other’s joys, sorrows and suffering. We are united in Christ and so we are family. I guess the only way to help you both carry this cross is to continue praying and so be assured that I will. I heard a wise priest preach about how when the apostles panicked in the boat because of the storm, Jesus wanted for them to realize that even if He had not awoken and calmed the storm it would have been enough for them that He was there with them in the storm tossed boat. It is a hard lesson for me to remember also but hearing it put that way kept me focused in my latest storm and it was different this time. I hope that y’all can feel the prayers of your brothers and sisters in Christ and feel His presence with you in this storm. Know to that I pray for your families too. I am a mother of three and have 7 grandchildren so I know how your parents feel. My son has had seizures since 3rd grade and he is now 40 yrs old. I can’t say it has been easy but it has been a gift in that it brought us all closer to Christ and each other. Sorry this is so long but I wanted you to know how much the three of you are loved and how God is using you both in so many ways. May the peace of Christ be with you all.
I wish you all the blessings in the world to give you strength xxx
Stopped the video to say a prayer for you..hugs from New York!! Stay strong Mary..God Bless and Keep you Both Always...
Mary you don't have to be so strong all the time.. God has this you let him take that burden... remember he has got you this far he will not let you fail..
Oh sweet Mary, it breaks my heart to see you cry. Thinking and praying for you as always!
you are so strong. it is amazing to watch. the times you feel weak... you press on.. incredible...
My hugs are with you guys for healing, comfort and easier breathing for Mary. I love you three, you are such a team with such comfort and love for each other, that alone, is the best healer. My love and hugs to the three of you, see you tomorrow!
I think of you often and all your struggles. Thank you for sharing your life and emotions with us. I share your story with others.
I'm sending many prayers and positive thoughts your way!
Mary you are amazing. I can not believe how you have such a positive attitude towards all you have going on. I pray for you and Peter everyday. 💗
One thing about pulmonary function is that it can actually swing with your emotions. People don't commonly think about their breathing being impacted by their emotional state even when they know everything else from blood pressure to body temp can have an emotions aspect people tend to think breathing is breathing and breathing is not really effected by anything but exercise and that is not always the case. We see this a lot with chronic lung patients and will actually note if we get a change in numbers from one time to another if we are also seeing them with a change in their emotional status so its taken into consideration. If patients are down or unhappy about something we see a shift in their tests and if then see them later when they have bounced back emotionally a couple weeks later - their numbers are better too, and very often nothing different has been done. Most people seem to know that when someone is upset getting them to breathe differently can help them out for some reason for many years we never thought of it the other way around and that maybe emotional state is impacting how well or not well they are breathing. Sure its just a number and that is a mantra people use to deal with a change in a test but in the back of the mind we know that if the numbers did not matter we would not be gathering them. We noticed of extended periods that if a person started getting lower numbers and was worried about that it affected them emotionally and added more things for them to be worried about. If those same people could get a turn around in tehir emotional status, often with cutting out routine pfts for a while so that it was not something they worried about or felt depressed over and then did measure them once again when they were more stable emotionally and were in an emotional place closer to the way they were when we had gotten their baseline numbers we usually see improvement. Of course that is not the only thing that can impact your pulmonary function but keeping in the back of your mind about where you are feeling emotionally may actually explain some lower numbers. Of course we hear from patiens when they are sick or have had problems develop and that they are expecting numbers to point that way, but we have many that will tell us before a test that they have been feeling down all day or for a few days and expect we will see that in their numbers and we usually do. And in the same way we have people coming in and say they feel physically better so expect good numbers and we have those telling us they are feeling good emotionally and we might notice that. We even have those that feel physically sick but are emotionally on the up side and so we do note that because the "up" emotion might the reason for a good PFT when the physical symptoms tell us their numbers should have dropped. And crying can have a lot of detriment to your pulmonary system at least if you have been crying around the time of testing. When you cry enough that you feel short of breath its better to wait on doing any tests for at least 4 hours as there are many many body functions that are disrupted from crying - from blood pressure to hormone production and release and many things inbetween. Most people if they have a hard cry will notice that they are out of breath for some period of time after they stop, some experience headaches, or some feel very tired afterwards and so on. We ran into the same issue with home care vs hospital we were able to work out with a lot of push back from me. Given that when she was and at a children's hospital it was really bucking the system to have her at home rather than in the hospital for most of every year. It was just not the children's hospital policy or procedure to have kids on home care for antibiotic therapy and I had to actually drive into the city with her blood draws everyday cause they wanted daily labs run. Later when she outgrew a children's' hospital and we move to an adult hospital they not only did not have an issue with it - they encouraged it and even made it so that I could drop her labs off at a local lab near where we lived and that lab would forward the result to the hospital as they did not mandate that there lab had to run the tests. The biggest problem we have had with antibiotics, since she takes antibiotics daily - either orally or by IV is that over time either the antibiotic is not really stopping the infection process that we want it too and she starts getting shunt infections again or she is on an antibiotic long enough that she gets sensitive to it. We did finally get to the point where she was going to have to be in the hospital for her antibiotics as everything they needed to give she was sensitive to in some way. And so having to us an antibiotic that had caused issues before meant a hospital stay and that could be a very protracted affair. After a lot of talking about it we decided that the better bet was to use the time she had to be in the hospital anyway to also use that opportunity to desensitize her to the few antibiotics that they had a way to do that. It meant an ICU stay rather then just a regular floor but it meant that once through this there would be a few antibiotics that she could again use safely at home. Not something I would recommend everyone doing as it was a tough haul having to be given stuff you knew would make you sick while getting the body to cope with it but the fact that it would mean she could be at home next time around made it worth it to her.
Sending all the gentle hugs and prayers I can
Wow, hang in there you three. Yes Ollie too. One step at a time. Sending prayers and hugs.
Always sucks to be sick, sucks even more with a chronic lung disease. You are both so blessed to have each other and Ollie and you know that you are blessed with each other❣ No one is prepared for bad lung function results☹
Hi Guy`s , I am sorry about your numbers being down , but they will come back up.
I have arthritis and when ever I get a really bad flare up I have to either be in pain or take prednisone , not the best drug to take m but it does get the inflammation down and in your case in will help clear your air ways. Glad it is a low dose , other wise you might be house cleaning at 2 AM ! LOL
Good luck with getting your feeding tube straightened out once and for all.
Well guy`s all my best , say hi to Ollie for me , and just seeing Peter`s love for you Mary tells so much.
Take care and have a safe trip home , and thanks for the video. Gary
Keeping you all in my prayers.
I just have to say I absolutely adore it when you two lean your heads against each other. It's very symbolic of marriage (& relationships in general) you are both sturdy enough to keep leaning over on your own but if you get tired you can rest on your partner and know they won't let you fall. Also, Mary I am so sorry to hear you aren't feeling better. I will keep both you and Peter in my prayers. 💚
Hi Mary and Peter and Olly l just started watching your Blogs omg you are the sweetest couple This is what true Love is about so refreshing to see l have become a great Fan and no matter what Keep on fighting this battle my hope and wishes is someday soon you get fresh lungs to breathe in the meantime your Love strength and endurance and Hope together makes things abit brighter actually alot brighter and Hope for so many others as well.
I feel for you mary as I'm in hospital at the moment and I've hit the frustration barrier 🧡
I hope you start feeling better soon. I have been having some really rough days these last few days myself. Keep your chin up.
I had histoplasmosis a few years ago and my lungs are permanently scarred. Keep pushing on....it's what we do..
In every stage of the fight, I’m cheering and fighting for you!! 💗 I’m always here for you guys!!
Hello Mary, so sorry you aren’t doing well recently. I so admire your courage and your attitude, you are an inspiration. The situation with your bone marrow is very unfortunate, please have your hematologist check for multiple myeloma. It’s better to be tested and have it ruled out. Hugs!
Prayers Mary 🙏🏻 keep the faith . Praying that you find treatments that will work for you to get you back to a more stable place where you were .
Prayers for you guys.
It's okay to cry, just dont give up! Sending Love Frey Life
Sending love and prayers. I've been having a tough time as well and y'all always help lift me, thank you.
Mary, Peter and Ollie you are in my prayers and hope you feel better re soon. You are such an inspiration to a lot of people. God bless you and your family. Love all the way from South Africa! CHARLOTTE
I'm so sorry that you aren't feeling well. I hope that you have better days ahead.
I cried with you, Mary. Sending virtual hugs.
Hang in there, Mary. You're a real hero.
Oh Mary. My heart just breaks for you. I'm so sorry. You and Peter are both in my prayers.
I continue my prayers for you Mary and Peter....and sending all my love from Pennsylvania. Thank you for inspiring me through your authenticness and your faith. Love you both :)
I am sorry for your bad days. Wish I could make it better. Hugs and prayers your way.
Please be strong, I am here praying for you and I have this feeling that everything will be okay! 💞
Mary, I love your freckles. You are so pretty.
Prayers for you both. I love how you can stay positive even in the trials. You got this 💜
Feel better Mary my heart breaks at the way you feel all my love to you and peter a, and peter you are an awsome care giver to your beautiful wife Mary keep the faith 🌻🌻🌻🌻🌻🌻🌻🌻🌻🌞🌞🌞
Poor Mary. Keep on keeping on as always right? Praying always!
A weep is weep. We all need it when reality kicks us and then kicks us and sometimes kicks us yet again. Tears must come out .
Praying for you Mary and Peter ! I understand the tears there are just days that despite your best efforts of pushing on it's just overwhelming, I struggle with health issues and autoimmune disease and I understand but I know the Lord is with us he bottles each tear they are precious to him. I am praying for your healing, wisdom for your doctors and that the Lord will give you strength in this journey. On a lighter note I love when Peter says girl you've got issues LOL I got issues to Mary and Peter and without Jesus I don't know how I would make it. Love you both God bless I will keep you in prayer
So sorry about your numbers and not feeling well. Wising the best for you guys. Side note... I live for the Ollie clips at the end lol he's so sweet :)