🏥 LUNG FUNCTION DECLINE | IV’S? HOSPITAL? SURGERY? 🏥


Okay, so just finished PFTs. I think there’s less fear involved… with lower numbers because we have more answers. ♬ Oh, you gotta breathe, breathe, breathe, breathe ♬ ♬ Let it go and let it be, be, be ♬ [coughing] [coughing] [nebulizer machine running] [coughing] Good morning guys. Mary’s outside. We’re getting ready to get in the car and go to CF clinic. This is, um… I don’t know. I think we’re both feeling just like, a lot’s up in the air in our lives, and part of that is where Mary’s health is at right now. And so we’re gonna meet with her doctor and… see where we’re at. I know this has been a rough morning for Mary’s lungs and uh… I think she’s feeling kind of nervous about today and so we’re gonna take it as it comes and we’ll bring you guys along but we got a hop in the car and get on the road. [coughing] We did it. We’re in the car. We did it. We did it. [chuckling] Rough one. Ahh. We just had our pre clinic, uh… meeting. [Peter] Yeah. Peter goes… How you, what are you thinking about your health? No clue. And then I said, what do you think? And I said, no clue. So… And we said, oh good, glad we’re on the same page. No clue. ♬ worship music ♬ [Mary] This is the song we blasted before… Scotland. [Mary] Yep. The month or two before we left for Scotland. ♬ The Rock Won’t Move by Vertical Worship ♬ ♬ I’m hidden safe in the God who never moves ♬ ♬ You are holding tighter still to me ♬ ♬ Oh, the rock won’t move and His word is strong. The rock won’t move and His love can’t be undone ♬ [Peter] Okay, we just arrived. It was a little bit of a rough entrance with coughing and… [Peter] the whole shebang, but we made it. ♬ gentle piano music ♬ [coughing] Okay, so just finished PFTs. Can you tell? Oh… It was hard. It was hard walking up here. You did good. Uh… Well, I guess they’re indicative of how I’m feeling. Yeah, they’re lower than I think we both had anticipated. They’re lower than they’ve been in two and a half years. Yeah. But… Good thing we’re here. Yeah. We like, looked at the numbers. I don’t look at them until after I do all my attempts. Because I don’t want my brain to play tricks. I just want to do my very best and whether they’re great or not so great, I’m gonna keep doing my best. So… After I did all my attempts and then sat down, er, looked at the computer, I was like… oh. Oh my. Which, it’s so weird… [burping and coughing] Excuse you. Um…hold this. So weird because what? It’s weird because… [clearing throat] PFTs… sometimes when I’m doing it, it feels like really hard work and my numbers are great or my version of greeat, and then… other times I do PFTs and they feel kind of normal and then my numbers are like, way lower or whatever. But like and same goes for like, walking in here. So we often base how I’m doing on… How hard it is to come from the front door to the clinic room. Which is an elevator. It’s not even like I take the stairs. But it’s an amount of walking. I think I have to go to the bathroom. Okay, go ahead. Okay, sorry. CF life. I think I was thinking… [exhale] Well, anyway, we, I sat down. Are you laughing at me? I sat down. Peter’s like, it’s okay. I was like, yeah, it’s totally fine. Those are great numbers. Um, and it’s kind of a joke, but… It’s so interesting. I’m thinking back to like, when I finished, um… the tigecycline. Yeah. So, two IVs ago. And I remember we came up to clinic. My PFTs were like, lower and it was, I was feeling miserable. Like, from the IVs, and it was really discouraging. Yeah. And today I like, I don’t feel offended by those numbers. I’m like, that’s how I’m feeling. Yeah. I mean, it’s a difference to be finishing a course of IVs and having those results versus… I mean, those results were better than today, but I’m just saying. Right. But I guess I’m thinking… Um, sorry. Um… I think there’s also less fear involved… with lower numbers because we have more answers. I don’t know. Yeah. No, and we have things coming up. Like, hopefully this vertex drug, and… probably IVs, whether now or… in the future, I don’t know. Yeah. I was… Yeah. I really thought my PFTs would be the same… um… even though I’m symptomatic, because that’s kind of how my body does things usually. So I thought if my PFTs are the same then we could give my sinuses and my symptoms another couple weeks, but… I don’t know now. We’ll see. We’ll talk it through with the doctor. Yeah. And keep you guys updated. And also ask more questions about timing when… Will the new vertex med maybe be available and stuff. [Peter] While we’re waiting for the doctor, Mary’s working on a research study on hearing. [coughing] All right, Mary, uh… [coughing] Finished up, we finished up with the doctor and then Mary had to finish up that hearing research study. She just finished that up. We’re gonna go from here and go get blood work downstairs in the lab. [coughing] I’m a beet! You are a beet. Ah… So basically… I just finished two weeks of… [coughing] Oral… [coughing] Oral antibiotics and… this cough is, I feel like maybe it’s gotten worse since you’ve stopped. I mean, I know that’s hard to tell because every day is subjective. Like, in terms of… activity and coughing and all that, but… I think, with her lung function… Like, obviously we’ve talked about how that doesn’t dictate what we do. But Mary and I, actually, after we said in the car, we didn’t, we don’t know what to think of her health. We did say maybe lung function today will be an indicator, because we know she’s not feeling so great. But if her lung function was stable, maybe we just say let’s, let’s give it some time. Wait it out. Yeah. But since the lung function’s down and symptoms of coughing and… Yeah. Headaches and out of breath. Fevers. Um. We’re talking about doing IV antibiotics. And possibly sinus surgery. My CF doctor is going to talk to my ENT. I’m scheduled to go see her but not for a few weeks, and so he wants to talk to her before that. Yeah. So we decided to, uh… Not start anything immediately. Her doctor’s gonna… He wants to see my blood work. See the blood work, think about a plan, in terms of what we’ve done in the past and… All the… Well, because there’s not like, a good IV option. Yeah. So it’s kind of like, well, we kind of need to weigh it out. Figure it out. So we’re gonna talk tomorrow and try to come up with a plan. Do we start IVs at home or come in the hospital? And if we’re gonna do sinus surgery, I’ll obviously come in the hospital. All of the things. I don’t even know. Yeah. I just remembered… We’re supposed to go buy a house. Yeah. Well, we’ll figure that out. We got, we got, we’ve actually got time. It might actually be good timing to start IVs now. Yeah, maybe I’ll feel better? We’ll see. Or will I feel worse? I don’t know. There’s not always a lot of answers. But um, this is what it’s like to come to clinic. You never know what’s gonna happen, for the good, for the bad. Whatever it is, you gotta take it for what it is. I mean… And at this stage in CF there’s just, nothing’s really clear-cut, you know. It’s just a lot of just weighing a lot of options, a lot of, or not a lot of options and… Uh, if we did, you know, sinus surgery or if we did IVs or if we did all these things, so. So we’re just gonna keep pressing on. Yeah. Thanks for coming to clinic with us. [both] As always, we’ll see you tomorrow. Good night. [Peter] And good night little clinic buddy. We’ll see you tomorrow. ♬♬

100 thoughts on “🏥 LUNG FUNCTION DECLINE | IV’S? HOSPITAL? SURGERY? 🏥

  1. Sometimes health declines are accompanied with waves of discouragement. Other times I feel like I can handle what’s up ahead. Each day is different. Today, I’m ready for the fight 💪🏻

  2. I think a great idea for a video would be about marys health and healthcare while you were in scotland. 😙❤❤❤

  3. I can relate to pfts being all over the place. I can never tell before I take them if they will be good or bad or great. My best numbers in the last few years came during pfts when I felt like death which completely shocked me. Sometimes I don’t pay attention to them because I feel their accuracy for telling me health aren’t always reliable I hope they come back up I’ll throw some prayers your way!

  4. Mary, you are such a warrior! My heart and prayers go out to /for you! May God's embrace comfort you and give you strength. Thank you for sharing!

  5. Stay strong Mary.To Peter: You never cease to amaze me..You put on such a strong front for everyone. I can see the worry in your eyes, and pain in your voice..It's ok, to not be ok…No one understands the pain and mental struggles being the spouse of chronic illness patients..my husband has End stage renal Disease which is different but . 10 years, the bumps in the road are scary. I feel for you. Attitude is everything, good luck guys <3

  6. Hi Mary & Peter, I am so sorry Mary’s health is declining and her struggles are heartbreaking. You are an amazing fighter and Peter an amazing caregiver. I know God has led you to NC to receive the next level of care. I pray for you everyday and know together with your faith better days are ahead. You two are a beautiful example of unconditional love and commitment. May God help to keep you at peace as you begin this next chapter. Much love, hugs and prayers from VA. 🙏🏻💗🦋

  7. Hey Mary. Why R U having sinus surgery- again- ???
    I told U I had sinus surgery, and it's worst !
    We all just gotta take one day at a time !!! Even hours,minutes or seconds.
    Take care 💕

  8. So many prayers for you both!! I hope you will feel better! Also.. I have that "hello world" decal on my bedroom wall too!! #dollartreefinds 💖💖

  9. God, I receive your pure, true, unconditional love for me. I praise your wonderful name and thank you for your goodness, grace and mercy! Your love sustains me and I seek to be a reflection of your love in the lives of others. In Jesus' name I pray, Amen

    Love you all

  10. It does sound a little worse on that cough but pray you'll feel better, and hope that med you took will stabilize your lungs. Yesterday you seemed pretty good.

  11. Seeing the Lord work through both of you, brings me joy! Here's hoping for progress. My pap used to say, hope until there is nothing left to hope for!

  12. You guys have the most genuine smiles I ever saw!! Mary, your face positively lights up when you smile. How you do what you do while coping with your health issues is such an inspiration. All the very best to you both. xxx

  13. Praying for you both. Mary, I’m specifically praying for strength and perseverance! Good night from the Pacific Northwest!

  14. When one week at a time sounds impossible, try one day at a time, when one day at a time overwhelms you, try one hour, then one minute or second at a time. You WILL get through this storm, Mary. I want to hug you so bad right now! Love the crap outta you.

  15. You both always say thank you to us for watching but THANK YOU for taking the time to vlog even even things are though. Praying for y'all 💖💖

  16. Praying for you! It's hard to watch you struggle:( you're both such amazing people and an inspiration to keep fighting no matter what (and with a smile:) I've been using colloidal silver for years on myself and my kids for minor things like eye and ear infections to scary things like strep B. We inhaled it with a nebulizer and healed it without antibiotics! Silver is a natural antibiotic. Kills the bad stuff without killing the good stuff as well:) here's some info about it. https://thesilveredge.com/colloidal-silver-and-cystic-fibrosis/

  17. You're so so cute Mary! I just love the princess cup. I guess when you are in a coughing fit all you can do is do the small things that make you smile and if a princess cup doesn't do it, I don't know what will

  18. Hey Mary and Peter. Sorry, it was a rough day. Mary, you look like you wanted to cry. It's ok I did it for you. My heart breaks for you. You must have the tightest abs from all that coughing. I know you had sinus surgery before. And now possible again. What does sinus surgery do? Hang in there hopefully brighter days to come.

  19. You can close the house via mail. I hope all goes well and you can get to Duke soon. The Transplant team watching over you for the next time period will be great. Reassuring to know they keep tabs on you … our friend saw the pulmonary doc on the transplant team for about a year … they helped so much by knowing his lungs. I bet you will love Durham!

  20. Oh Peter….that worry on your face. My heart is with you. And Mary, you’re doing great! Girl….you are my hero. Keep fighting.

  21. This video was so difficult to watch. Especially at the very beginning. I’ll say it again, CF is so amazingly cruel. 😢
    Hugs and prayer ❤️ God has you every day.

  22. Thank you for being strong, keeping a positive attitude, and reminding all that God is with us. I’m older than you guys but I’ve learned from you. Thank you!

  23. I wonder if it would help at all to go to an area with very healthy air such as davos in Switzerland (perhaps some area like that in the us)

  24. I'm going to comment on your lovely outfits. The blue in Mary's stripe top, matches the blue in Peters lovely shirt. You two look fab together.. Xxxx

  25. 2 Corinthians 12:9-10

    " But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. "

    I feel like you really are so strong, because of your strong relationship with God. God only knows what you've been through! You can explain to people the hardships of your cf, but God is right beside you/in you feeling it with you. I'm very sorry your health has seemed to decline some, but in God's peace I want to remind you Mary that you are a wonderful strong woman, and when I see you, I see someone who is God like/Godly image. He won't let you down. 💕

  26. Thank you for sharing your life, the good and the bad. I really hope that you and your doctors can find a good path forward with your treatment. Thank you for helping me find the good in hard situations ❤️

  27. I really needed the message of that worship song today. Thanks for reminding me that 'the Rock wont move'. 🤗🙏

  28. OK, so I get you're on the list at Duke, but I don't understand why you're moving away from your normal clinic ? Pardon the arrogance. Here in Australia most people just get on the list and the organs are flown in if available , wherever they are … Please clarify

  29. Praying for you guys , praying for courage , peace , strength and wisdom . Most of all for healing , or the cure ! ✝️🙏🏻💞💞💞💞

  30. you are strong Mary <3 stronger than you know 🙂 think about all the things you've overcome! what makes you think you can't handle this? <3 DO WHAT YOU THINK YOU CAN'T DO! 😀

  31. God bless I hope that the lord keeps you and your family in his prayers I know that I will keep you in my prayer’s I am almost positive that lord Jesus Christ is praying for you good luck on your journey Mary remember that Oliver and Peter are with you through this whole journey

  32. Oh goodness… I’m so sorry I missed your upload yesterday, my grandfather passed and I was at the funeral and with family all day. Then to hear you’re not feeling well made me sadder… I’m so sorry Mary. I hope your team can find a solution to make you feel a bit better. I’m always praying for you, always!😢💛🙏💛

  33. Oh peter. The concern on your face. When I watch a video of you two, it warms my heart that Good brought you two together because he knew this needed to happen. With how our society is to see a man being an amazing rock for his wife is such a beautiful thing. God Bless both of you. Much love and support Mary. 😊🙏❤❤❤❤

  34. Its amazing the peace the lord can give us. I have caught myself in a similar moment shortly after my cancer treatment started. I just finished my chemo and radiation but about a month in, maybe 3 weeks but I found myself just sitting in the car on my way to treatment thinking, "Why am I so calm? Why am I not worried? I have cancer in my body …"
    Because God is good. The lord is constantly keeping me in awe, mostly with all the little things he blesses us with and those moments – removal of fear just make me so grateful because fear can pull quite a doozie on your poor brain. Take care Mary, will be praying for you, and you as well Peter.

  35. Your strength in all this is absolutely unbelievable. I see you struggle, and it's breaks my heart that I take breathing for granted. Cheers to you both!

  36. Mary is a fighter and she says nothing gonna get a n her way 💪💪you both truly are great for in this journey together 💗 love Tfs God bless 🙏 Margaret from Florida 🌴 🌴

  37. Mary your amazing, your so strong and I must thank you. You have brought me closer to whom ever is up there than I have ever been before. Lots of love

  38. You poor dear. I wish I could do some coughing for you or give you more air. You are so brave. Love you two.

  39. I'll be praying these help you feel better this time. I just finished my first round of IVIg yesterday. I am feeling pretty horrible. But I knew a lot more about it thanks to you! I really appreciate you being so honest about it. It really helps. Also as a new port patient, you talking about yours helps me feel more confident with mine! I really appreciate it and were gonna be here with you through this! You be got this!

  40. You guys rock, but this rock IS moving … states (see wat I did there 😎). You guys have a good plan in progress, and like you stay, one step at a time, eh. I wish I had faith in god, I admire poooe like yourselves who can believe in god and live life with faith. Once upon a time I too believed in a power greater than me, but I lost my faith after living through a series of major earthquakes (one of which was fatal). I’ve tried praying to believe, but that hasn’t worked. Watching you guys on your blog gives me hope though, and maybe one day I too will believe again

  41. I have taken advantage of out of state real estate closings several times, and I would highly recommend considering it. It was SO convenient, and did not cause undo stress (both physically and emotionally). Your realtor can walk you through everything. When life is so busy and hectic anyway, and then throw chronic illness in the mix….I was ever so thankful to be able to get my closings done via long distance. Just a suggestion, in case you haven't considered it. I've never closed on a property in NC; however, it's likely very similar to out of state closings elsewhere.

  42. So sorry the numbers werent great but you have both got this. The strongest people i know. Take care guys love and hugs from NZ

  43. This has probably been mentioned but are you on any of the other vertex CF modulators? I work in the CF world and was curious! I'm hoping the new drug is out sooner than later!

  44. Hi guys request/suggestion would u consider making a spotify playlist of your fav song's at mo? I always like song's you play in car etc. Thanks x

  45. Always praying for you Mary and Peter (and of course Ollie Boy!). I can’t imagine how scary it is to have all of these unknowns right now. But I know that you all are taking it one step at a time, hour by hour, day by day and leaning on the LORD through it all. Thank you for sharing this journey with us… the good and the bad ❤️

  46. My thoughts and healing prayers are with you Mary, 🙏❤️ sending my love and hugs to the three of you, see you tomorrow!

  47. You’re one of the toughest people I’ve never met…you’re an inspiration, both of you honestly. I’ve never been more thankful for my health.

  48. Have you ever made a list of the songs that encourage you and build you up, like a playlist? I’ve only recently found your blog and today was the 3rd time I have only a clip of a song that made my heart pay attention. I don’t have CF or any other physical health problems but I do struggle with Panic/Anxiety that triggers depression. I use to go to church every time the doors opened and studied God’s word all the time but these 20 years of struggling alone have left me with a mustard seed or two. My hope is barely there and my attitude is struggling with so little trust. That glimpse just to say a list if songs might be helpful for someone like me. I admire the attitude and outlook you two have and it has given me strength more than once. I wish I wasn’t facing life alone but it is what it is. Thank you for sharing your story!

  49. Take comfort in the emotional progress you have made by having the pre-transplant testing faced and accomplished. You have often referred to transplant as a last resort treatment followed inevitably by, "But we're no where near there now!" As if emphasizing "last resort" being the end of choices. And you seemed to push it away as if it terrified you. Look how far you have come! Emotionally you have overcome your fear, forced yourself to do the testing, making real preparations to relocate, to be ready for whenever you need to meet dealing with this life changing treatment. Do you see the courage you have found? You have entered into the space of acceptance which is beyond all fear. With this courage you are ready to make wise decisions as choices become important. You are accomplishing preparedness. There is no greater peace of mind than to be ready, in every way, to work with God to experience the best and healthiest life possible. Live laugh love. May God continue to Bless you!

  50. I have chronic and persistent asthma. I hate that spirometry tests. I get so tired a d light-headed.

  51. Oh Mary I am so sorry for the pft decline. I wish you had received better news. I do not have CF but I do have chronic cough that sounds just like yours. It’s so painful at times. Keep your head up and be blessed.

  52. You guys always have the best worship music going! Would you make us all a playlist of your favorites?!

  53. I'm sorry you're having such a rough time 💔 sending you all my love and support!

    Could you do a video explaining some of the CF clinic stuff? Like what is PFT(?) and what does it tell you about your lung function/health.

  54. I pray for her to get better. I’m sorry you have to go though this your brave your a fight. Keep fighting. I hope you feel better I can see you trying your best your a wonderful lady

  55. The minute Mary put her arms around her husband .I could see peace in her face. Having a medical condition myself I find a calmness if I just hold on to my husband also.. Peace,Love and Healing.💜

  56. I cant believe how strong you are you are stronger then me i have a rare genetic disorder called G6PC3 I have had ports NG tubes needles anything you can think of I will be sick all my life there is no cure yet but I'll be strong.

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