IS TRANSPLANT STILL NECESSARY?!?
07
November

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


My friends might have this question, and you guys, our friends on the internet, might have this question. So the question is what now? ♬ Oh, you gotta breathe, breathe, breathe, breathe ♬ ♬ Let it go and let it be, be, be ♬ [both] Good morning! This morning I put on my Duke shirt and it brought up a question that I thought my friends and family… I mean, my friends. My family knows the answer. But my friends might have this question, and you guys, our friends on the internet, might have this question. So the question is what now? Yeah. We have relocated to North Carolina. As you know, Mary was evaluated by Duke in May for liver and lung transplant, and it was a pre-emptive evaluation of… uh, kind of figuring out some details in terms of figuring out is her liver an issue that would need a transplant? And we found out that the answer is yes, and there’s only a few centers that do that, and Duke’s one of the top centers for that, which highly influenced us making the move down here. Right. So… So then I guess my question here is where are we at now with the whole transplant conversation in relation to I’m on this new medication that is changing our life, and… And where does that leave us with transplant? So… This is kind of just like us processing, because really there are no… like, direct answers for that question, because in life we don’t have all the answers to like, what’s gonna happen next? What’s the timing? Like, how quickly is my health gonna decline? Am I gonna be stable? Am I gonna get better? All of those questions. Of course we don’t know the answers, but here’s our best guess. The transplant conversation is… on one hand, it’s on hold. And on the other hand, we’re fully still connected with the transplant teams. So when we were here in May, the transplant teams basically said yes. We will accept you as our patient and as a lung and liver transplant patient here at Duke for when the time comes that you will need a transplant. And so we are a patient within both transplant clinics. That being said, they’ve already scheduled me for all my next transplant appointments which are coming up in like, two months, er, a month and a half. And that includes some further testing, like an upper endoscopy to check on some of the liver stuff, etc, etc. So we’re still fully connected with those teams. But I’m so excited to see them in a month and a half because they already know that I’m on this medication, and the lung transplant doctor has already called and like, asked how’s it going and that sort of thing. They’ve already talked to my team in Boston who put me on this medication. Everybody’s in the loop, but I’m excited for them to see it. I’m excited for them to see the increase in my pulmonary function tests. Our washing machine is singing. That’s distracting me. Um, I’m excited for them to see me and I’m excited to hear… [chuckling] Okay, it’s done singing. I’m excited to hear their take on it. Of course, this is all brand new to have a patient with, uh, what’s the word for like… extensive lung disease. What is it? Like… Severe lung disease. Whatever. It’s a new thing for somebody with… Progressed. Progressed lung disease to then get better. It’s all new territory. And so on one hand, the transplant conversation is we’re able to take a breather, literally. Totally. We’re so grateful, and so just to catch you up to speed if you haven’t been watching our videos, Mary started what is now called Trikafta. It was approved by the FDA last week, but Mary started it about 14 weeks ago. And she started it under kind of compassionate use or expanded access, as they called it. And she has seen just a tremendous boost in her health and lung function and quality of life. If you watch our videos in the last 14 weeks you just see Mary coughs a whole lot less than she used to, and so we’re so grateful for this stability. We made this move to North Carolina with the hope that this would happen. I mean, this kind of blew our hopes out of the water for what this medication might do, but… We made this move thinking hopefully transplant is years down the road. Right. And with this medication it’s looking like that may be the case. And Duke has said that they follow people for years before they get to transplant. Right. And so we’re just really grateful that… like Mary said, it can be on hold, but it’s a continued conversation because we don’t know what the future holds. We don’t, there’s so many unknowns, and we hope that this… medication continues to stabilize Mary’s health for years, but we’re also cognizant of this is very new. Right. There’s a lot of unknowns how it’s gonna affect your liver long-term. How it will affect the lungs. Like, will it, how much will it slow down the progression and all of that. We just don’t know. Yeah, and you know, it was interesting because in May when we were here for all of those appointments and we were meeting with these doctors, you know, we kept saying our hope is that the triple combo can become available, and they all echoed the same thing. That’s our hope too. And that hopefully we’ll be able to get you on that medication and it’ll do its work. And it was all kind of this future idea and hope, and now it’s reality. But on the other hand, like Peter said, we are aware that there are no guarantees. I’m on this medication. It’s doing amazing things. But we’re aware that at any moment things can change. And catching that cold a few weeks ago was a prime example of things can change in just a moment’s notice, and thankfully with that cold, I’m about a month out of catching that cold and I’m back to pretty much what I was before the cold. But I’m aware that that isn’t necessarily always going to be the outcome. And it could have had a lasting impact, or… or for whatever reason, if I have to come off of this medication, what they’ve told me is as quickly as you saw an improvement with this medication, that’s as quickly as you’ll see the decline, most likely, because what it’s doing is it’s fixing that protein in the cells, and when you unfix it it’s gonna be just like before. And I’ve heard that from other patients who have, who were on it for the trial or for whatever reason they’re not on it anymore, they said it’s true, you go back to baseline within days, and so we know that and we’re aware of that. I know that we told you guys, like, before the medication came out we were cautiously optimistic, and now we’re just optimistic, and that’s how we feel about our future. It’s like, we are optimistic because we see the benefits and we’re experiencing the benefits right now. But we also are cautious in that we know… we’re aware that things can change, and so… for now, for where we are in this moment and in this month… we’re excited and thankful to go show the transplant teams… all of the amazing things that have happened in the last 14 weeks, and I know that they’re going to be excited. But also knowing that staying in contact with them is important part of my future health care. Um, speaking of future health care. So we’re down here in Mass-, uh… not Massachusetts. North Carolina, and I will be followed by… the transplant clinics, liver and lung transplant clinics, and then the cystic fibrosis clinic, which is a completely different… [both] Clinic. Clinic. Yeah, and then I’ll have my specialties like immunology, and ENT for my sinuses, GI… all the things. We’re in the midst of transferring all of that. My Boston team has been in contact with the Duke team, and um, it’s quite a process, but we’re gonna get there, and… This is where we’re at. Yeah, so the month ahead is a big month of transition of making some of those connections with new teams, new doctors, and… taking the next steps. Like Mary said, it’s figuring out each detail, each doctor, each care team, and… so we… Long answer to that question of how the Trikafta basically affects the transplant conversation is that we continue to have the conversation in a much more casual way, and… We’re grateful. Yeah, and it’s a continual, um… discovery for the transplant teams, of looking at different tests and really seeing for the future how will my body do as we lead up to transplant, and then during transplant and that sort of thing, and part of that is like, the endoscopy that they want to do. They want to see the extent of what the liver disease has done to my varices and my esophagus and these sorts of things. So they’re kind of continually observing and studying my body, so that when the time comes they will be as prepared as they possibly can be. Um, but I think what it will look like from here on out and as my health is stable, I think it’s about every six months that I’ll be seen at the transplant clinic, and I’m sure that that will, um… We’ll, with time, figure out what works best for them, what works best for us, and how to best follow my body as whatever happens in the next months and years to come. Ollie just put his paw on my hand. Oh! Well guys, I hope that answers some questions, and if you have other specific questions about the transplant process, if you’ve just clicked on this video and you’re unaware, I have cystic fibrosis. It’s a genetic lung disease that I was born with, and as a CF patient like, progresses, sometimes it comes to a point where you need a transplant. So that’s why we were talking about transplant. It’s a very last resort option. And so that’s why we’re always talking about pushing it as far out as we can. Um, so we’re just gonna keep living and making the most of what today looks like, and… As always. We’ll see you tomorrow. [both] Good night. Good night, Ollie boy. [both chuckle] ♬♬


100 thoughts on “IS TRANSPLANT STILL NECESSARY?!?

  1. With this amazing new medication is lung/liver transplant still necessary? Peter and I talk about a few factors in today’s video!

  2. But what happens if the medicine your on keeps you ok but. You get older and need a transplant later on healing is not as well as a younger patient. Idk I'm just thinking from my mind set to how I would see that. I guess I would just do the transplant if it were an option for me in that position. Goodluck to you though.

  3. I have noticed that you cough less and your cough sounds less congested or "wet" than before. I hope you continue to get better.

  4. So so so happy for you! I truely hope that the only medical change is continued health and progress and stability and all good things!

  5. Yall must have a samsung washer mine sings to it freaked me out the first time it did it…. 🤣 Duke is a WONDERFUL PLACE

  6. I was watching this video with my boyfriend (who doesn't watch you all the time) and he commented how you sound so much healthier and your voice has completely changed! I went back and watched some older videos and its crazy how much your new medication has changed your life and even your voice!

  7. Wish my 3rd older brother can get that medicine. He been in the hospital almost every month with his CF. I don't want to lose other brother from CF.

  8. Hopefully you guys see this, but unless you have to, please don't move out of this house. This house is beautiful, and good things came when you guys purchased this home. Like improvements in health, and FDA approval of the medication. It's our superstition, our house affect our life, fortune, health and luck. Some in good ways and some in very unhealthy ways. But superstition aside, I'm so happy for you guys.

  9. I dont know much about the medication your on or the body and how it all works or much about cystic fibrosis so my questions might seem strange but… Are the pills you are on a temporarily changing to your "DNA"? (for lack of a better term) and if so if you took the pill long enough would it be possible to change it forever? I mean I understand that your DNA is your DNA and you cant change it but if taking this pill changes the small part to help you produce less mucus and over time you change every cell wouldn't your body eventually just produce cells with the change? Like I said I dont know anything about the body and I probably just described how cancer works but it would be interesting so see if there was a medication that could do this.

  10. 😂😂😂 totally distracted by your washer…I couldn't tell if it was mine, till you said something about your washer! 😂😂

  11. I'm so glad you talked about this. My son is 17 and goes for his first tx eval next week in St Louis. We hope to get the Trikafta soon and were wondering how it might affect his need for transplant. We love watching you guys!💜 Stay strong!

  12. …So we just continue to pray for Mary peeps..all who is reading this, pray that the medication Mary is taking will keep her movin’ and groovin’ for many years to come! We love ya Mary!

  13. Living with a chronic health condition does make one realize that anything can happen. The fact is even healthy people can become unhealthy at any time. Life in general for everyone is full of unknowns. Just be thankful for what you have now and let tomorrow take care of itself. This is coming from an unhealthy woman in the winter of her life. God bless everyone!

  14. Heavens but sincerely when you said.. What Now.. gee! I grew tired of constant dr’s week after week in hospital.. still no answer. While they searched I took a week to go up and visit my old Apache Medicine Man and Shaman. He said come up quick. I arrived he said ok.. sleep till I come for you.. tonight you will see Creation and perhaps death. I went in.. he came for me whenever.. seemed like only minutes. He told me to go in and shower.. come out nude.. I did.. he wrapped me in a huge black bear skin,,hide. He laid me down and started what I think was a black scarf healing.. to expect my death along the way.
    I drifted off as he chanted woke with him slowly breathing and chanting.. early morning.. seems he worked all night. Nearly called Ambulance but I lived after dying three times. Heck.. I felt great!

    That was late 1998. Still alive!
    I stayed a few more days as friends gathered for a weekend of play, prayer and grace.

    We never know his healing will occur. I see you and dang if you don’t look great.

  15. "in life, we don't have all the answers." exactly. which is why we have to take things one day at a time. for us believers, we do our best to trust in HIM and follow HIS lead. i pray GOD's continued blessings on you guys. much love.

  16. Your so much LESS breathless than you used to be, much less crackling, talking more, moving more, coughing MUCH less…..for the moment all good. One day at a time. Love from Scotland.

  17. Mary and Peter, when your washer went off I thought it was mine singing to me!! I just got the set and I thought it was my dryer playing a little tune and stopped the vlog to listen!! LOL

  18. https://www.bbc.com/news/health-50144742 VERTEX IS THE COMPANY! There’s 3 DIFFERENT Meds approved, NOT the triple combo!

  19. YEEAAYYY!!! What amazing , promising news. I am so very happy for you. I believe in the power of prayers, and you are in mine everyday. Love you guys.

  20. Thanks for answering this burning question for me! I thought that might be the case but wasn't sure! I watch you everyday! I'm from Ohio.

  21. Will y’all go ahead and stay in North Carolina or since the medication is working so well will y’all move back to Boston

  22. I paused your video thinking my washer was singing LOL …. then I didnt hear it so I clicked play again and then realized it was your washer!

  23. I am home from the hospital and happy to be breathing well again. I am still coughing but it is getting so much better my allergen asthma and pneumonia.

  24. What happens if your liver starts failing first? Would they just do a liver transplant, or would they go ahead and do both?

  25. I tell you what Duke hospital is amazing I had to go there for my heart and kidneys but now I got doctors closer to home

  26. I’m excited 4 y’all to see ur Duke team & new CF team! I think they’ll be BLOWN AWAY!!-I am aware tho, as y’all said at eval-because u need a liver+lungs, transplant may need 2 happen a little sooner than a lung transplant on its own. Ur smashing it Mary-& It’s SO beautiful to see!! 1 moment, 1 day, 1 step at a time! Loving the fact the transplant convo can be a little more “casual” (as Peter put it)!!!

  27. This makes my heart so happy! Not just for Mary but for what this medication could potentially do for so many other CF patients. God is good!

  28. Watching and thinking hmmm I don’t remember putting my washing machine on, pause the vlog and go and check, turn vlog on again to hear the sound again 😂

  29. From 14 weeks ago of where you were, you can see the difference. You're not coughing as hard or handing off the phone to Peter or putting the phone down and coming back to the vlog later. You've gotten more stamina to do things wheras before you didn't. These are the things that I've seen the most difference in. What a blessing this is!!! (((Mary)))

    True, you don't know what tomorrow holds. For now, things are moving forward to enjoy life. ☺ Wherever you guys are in this journey, your internet "family" got your back! 💙

    My question … When the time comes to do the transplant, will they have the organs up and ready to go? I mean, and NOT being funny, it's NOT like they can store/freeze the organs and use them when the time comes, so how does that work? Or is it, when they (hospital) do the testing, they get a feel it's time and start the process on looming for the organs they need?

    🌼hope your having a great day🌼

  30. Ollie boy is so sweet in this vlog. He looks like he's giving you physical support during the conversation. The paw on your hand, Peter, was priceless. So happy for you that the transplant discussion can be put on pause, even if you're still seeing the team. The triple combo is making you feel better and stronger. 💪

  31. One day at a time and cautiously optimistic. Those used to just be catch phrases to me. But with mitochondrial disease and systemic attacks, those words have a much deeper meaning. Mary and Peter have provided much inspiration and have guided me not only in acceptance of my disease, but in finding humor, gratitude, and love every single day whether it be a tough day or an easier day.

  32. Your washer sounds like my dryer & I listened if it was mine when I heard it then remembered that mine was not even on since this morning. lol.

  33. I have been watching you since the beginning. I feel like you are part of my family. I’ve laughed, I cried, and I’ve learned so much. I’ve prayed so hard for you guys when you spent the week at Duke. I felt so bad, just the emotions you were going through…Mary and Peter, you guys are my hero’s. This is so amazing. God is GREAT!

  34. Random comment but our washing machine also does that song at the end of every cycle haha continuing to pray, Mary … so glad you are on your new medication 🙌🏼

  35. You look amazing Mary, so pleased for you hunni, orkambi, trikaftor and another, name escspes me right now, has just been approved in the uk. Big changes exciting times. Keep up the good work sweetie, love to you, Peter and Olie. Xx

  36. Its a good question to ask and difficult to decide, I think all medicine at some point will be non effective you have the right attitude Mary if I put myself in your shoes I would get a transplant but that is me, love the videos all my prays to you and yours.

  37. Oh my goodness. When I heard your washer start singing I I actually paused the video to make sure it wasn't ours here. It's the exact song ours plays

  38. As someone who also suffers from chronic illness, my question is does this make you second guess the life decisions you both have made for your family? Like kids? I know for me the moment I start to feel better I often wonder is this God’s way of healing and changing things?

  39. Im from the uk and i just found out my gene mutations, I have only one F508del mutation and one other one called c.1572c>A (Cys524*) so im also waiting for the tipple therapy drug to see if it will help me, since in 2018 my lf was 82% and since getting pseudomonas its dropped my base line down to 68, and just recently down to 56% at my last clinic review. ive been put on ciprofloxacin tablets and colymicin neb and starting to feel way better but a part of me is a bit sad that i might not be able to get back up into the 70's again. im trying to stay hopfull though

  40. I'm curious whether someone who has already been through transplant is eligible to take the triple combo to save the rest of their organs?

  41. Good luck on the medication and the upcoming appointments!

    I take a common antidepressant but my anxiety sometimes makes me wary because I don’t know what potential long-term effects it could have on my body.

    One of my friends recently had an endoscopy for a different reason. And I have a minor surgery coming up on the 19th for removal of a cyst on one of my fingers. I’m a bit nervous as I haven’t have surgery (aside from wisdom teeth) since my eye surgeries when I was little. I also see a hematologist because of a possible very low-level blood disorder/blood cancer. It might stay stable for a long time-I have no idea really.

    Also, I could use some of your optimism!

  42. OMG!! My parents had that same washer! You’d think it would be better than the horrible buzzing noise some washers make, but it gets to be about the same level of annoyance😂😂
    I will be getting on Trikafta soon!☺️

  43. Just like my standard poodle, he gets the chair, I take the floor (happily!) You two really help me. I truly feel you are my friends even though we have never met. Love to you Freys

  44. You are in good hands with Duke, my son goes there for his heart defect.
    You are such a warrior, I really hope you can get the best treatment and the best quality of life possible!

  45. It's amazing how God heals some miraculously and others, He uses the doctors He created to heal us. I'm thankful and praying your health continues to improve.

  46. Ohhhh man, I love you guys, but I'm a loyal Tarheel. I guess it's ok to use Duke for it's medical renown (I'd do the same), but spend some time in Chapel Hill. I dare you not to fall in love with the town. 😉 Here's hoping you soon consider yourself a Tarheel.

  47. OK! Your Washmachine is sing'g. But doesn't it sound better than the older Machines with the loud BUZZER!!! 😆 LOL!!

  48. Your washer or dryer has the same chime as ours and I thought:

    Ugh. I forgot my laundry.
    Wait.
    I never heard it from the bedroom before;
    This is weird. Ohhhh it’s Mary and Peter’s. Ok brain,
    Carry on.

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