IS TRANSPLANT STILL NECESSARY?!?

Vlog 10.27.19 - Now that Mary is on Trikafta... what about transplant?
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[@thefreylife]

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

[@drf2832]

Mary, I love the natural smile that came across your face at the beginning when you said ... since I am now on this new medication. The feeling must be so awesome. I hope for something like that for me with my (different) health challenge. By the way, do you now need to say, "Trikafta can"? Haha!

[@bridgetarndt1302]

Oh the joys of having a chronic illness, you don't really ever know whats going to happen.... Im so glad to see you all getting to enjoy this season of life without any medical urgency

[@canbanythang5004]

❤💜💚💕💕💕💕💕💕😊🙏🙏

[@cindybunn7685]

I love how Ollie gets the chair and you two are on the floor lol.

[@cntbelieveimdoinths]

Guys!!! I’ve tried reaching out several ways. I live in Durham, I’m 27 and I’m a student at UNC (boooo duke) but I’d love to meet y’all and be friends!

[@SoraLove599]

Mary your voice has changed considerably 😱😱😱

[@annsilver8523]

Yeah ...Im so happy x her !!

[@cysticfibrosiswarriorsbran6211]

Excited to say there working on getting me on this new drug trikafta. I'm Excited to tell you guys. Love you Mary and Peter

[@lauraz5210]

👍🙏

[@missl1775]

Good luck and G-dspeed

[@lauragadille3384]

Good luck

[@nancieblackburn3176]

**CYSTIC FIBROSIS WARRIORS** Brandi F. Good luck and God bless!

[@mimis-girls7935]

**CYSTIC FIBROSIS WARRIORS** Brandi F. GREAT! a prayers for you!

[@brookewalters-schmidt177]

What's next is you just keep living your lives everyday to the best of your ability....just as you always have....God is giving you this time to build community....get settled....and I pray it will be a very long time before transplant is needed!

[@carmjulee9702]

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

[@sierrahill6216]

I’m so glad that you made this video! This crossed my mind every time you talked about how vertex was helping you! Love you guys!

[@Loopy93lou]

Just heard that Vertex is going to be available on the NHS in the UK! This will be amazing for people here with CF :)

[@pattihall9853]

Saw a video where a young girl in England was told she will be getting the medication. Tears of joy!

[@janellmartin7066]

Your voice seems so much more clear. Not raspy anymore 🙌 Prayers

[@Laura-et2xj]

I haven't watched for a number of months now... and wow. I'm sitting here crying as I'm listening and seeing the hope and positivity and sheer joy exuding from both of you in response to the effects of the new medication. Truly this is amazing; I am so happy for you. Live your beautiful life Mary. You so more than deserve it.

[@suzanneparmenter1478]

Hi guys your triple combo drug has now been approved for the use in the UK. They weren’t sure it would get approved because of the cost and the fact our medical costs are different here. Basically they have come to an agreement and the cf groups are all so pumped especially for the younger generation xxx

[@TheGemmabrooks22]

It's not the triple that's now available in the uk. It's the older generation of drugs. Orkambi, symdeko and kayldeco.

[@mistycgrimm]

You guys are such a blessing! So thankful Mary got this med early and now it’s officially available for others. We love you guys so much and keep you in prayer! 🌸🌼🌻💐🌷🌺

[@lorifox4699]

Peter and Ollie match!!! Super cute!!

[@carolynkid216]

I have had a kidney transplant. It IS important to be close to where your care center is...no matter where you are in the process...pre or post transplant. Being on immuno's......things can change in a matter of minutes...a simple cold can set you back weeks and weeks. Like you, many clinics comprise my life and they are all part of my ongoing care, and I consider them all part of my transplant team. Even my dentist is in that loop. Life is really one day at a time....enjoy the good days, and stop and rest and recover on those not-so-good days. I praise the Lord for this gift and work hard to keep my health stable, and avoid anyone who is sick, or stay out of situations where I may encounter folks who don't know enough to stay home when they are sick!! Like you, I wear a mask at the hospital and now with flu season upon us...I wear them when I go shopping as well. All the best to you. Thanks for sharing your journey. God bless.

[@keeleycooper7296]

I want to like your comment but my OCD won't let me , so I'm commenting instead! Beautiful comment .

[@carolynkid216]

@@keeleycooper7296 Thank you!! Your words are such a blessing. All the best to you.

[@keeleycooper7296]

@@carolynkid216 God speed lovely 💙❤️ merry Christmas to you and your family from mine!

[@carolynkid216]

@@keeleycooper7296 Thank you!! Merry Christmas to you and your family as well!

[@wujiajia5314]

It's been a year. I hope you're still doing okay. May God continue to light your path into the future.

[@Lyn4817]

So great to see you talking Mary and have just a little cough. The difference Vertex has made is so amazing. Usually when you got a cold, you would be so ill and needing to go on IV antibiotics. You are in the right place for when you need the help. In the meanwhile, you can enjoy your new home and get to know North Carolina. It is wonderful that you can have quality time together before needing your transplant. We have all witnessed how well you have done on Vertex. At least you are both realistic about your future. Just take it one day at a time.

[@rae1957tn]

Peter and Ollie are dressed alike they’re so cute.

[@debbie7771]

It’s been a while since I caught up with you. Mary, you sound so much clearer and stronger. So incredibly happy to find you like this. All the best for continued improvement. 🌻

[@fr.jimwatersfranciscanprie7187]

Hi folks. In the 90’s I did a documentary on Duke med Center..cancer care. I became invested in one mom and daughter with cancer so did our viewers! In fact I wound up under their care too. Best anywhere!

[@fr.jimwatersfranciscanprie7187]

Oh.. I am here in Belgium because my doctors at Duke thought best

[@maryreynolds5310]

...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!

[@ksmegn]

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!

[@TheUrgos]

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!

[@vtlgbtbt4]

Love Ollie's red and black buffalo checked bandana! So cute!

[@phyllisaleshire4460]

Bless you during this resettlement and health break...I love you three. You have become family to me because you tell me all about your lives, about God in your lives and everywhere; I love sharing the journey with you. Bless your heart Mary, Peter and Oliver. Thanks for including me

[@AnnaRvlogs]

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.

[@partywithkrissy]

I truly think this could be a complete miracle. Prayers answered. God is good. 🙏🏻

[@ooXChrissieXoo]

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.

[@glendaruff125]

Peter and Ollie match today. The best to you Mary for all your healthcare needs.

[@kmax4722]

Quality of life is Everything for people with a serious illness and get hopeless over not having It.

[@WickedlyMe328]

CF is WHY I signed my donor card when I was 17. A friend of mine in HS died waiting for one of CF. I had another friend pass from CF after a lung infection. Mary you sound so much better. My dad knows some one who had a transplant and still going in his late 20’s and has CF. Keep your hope alive. Live each day to the fullest.

[@tonisangel5024]

Ohhhhh precious Ollie!!... Mary and Peter around the time I found your beautiful channel my husband was diagnosed with stage 3 Cancer . Today's video made me look up and say thank you that you and my husband are so blessed to have the medical care for both of you! I'm so happy Mary your medication is working Praise God there is such a difference..🙏🙏🙏Thank you both for lifting me up on such sad days...🙏💜🐦🌻🎃

[@curlybibliophagist2]

Hugs! I'll keep you and your family in my prayers.

[@tonisangel5024]

@@curlybibliophagist2 thank you so very much..💚

[@krisfightingfibromyalgia3099]

Thinking of you guys. Hope everything will go smooth for quite some time.

[@kathymayer6739]

Mary you look so healthy today! Your home is gorgeous and I hope you are both loving NC!

[@AmyVanDykenRouen]

I thought that was MY washing machine! I thought,”why is the washer making that noise? I don’t have any laundry going” haha

[@kristinespencer7301]

I’m so happy for you Mary. I have been following your vlog for several years now and have seen you suffer. It’s so nice to see you get some relief 😁

[@kcmobaseballmom]

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!

[@hugmefirst]

You must have a Samsung washer. I heard it and though "Did I start laundry and forget about it?"

[@annettequinn2471]

Lol I just thought the same thing while watching! 😂

[@DixieStardust7]

Thought the same thing too haha

[@Just_Call_Me_TK]

I said the same. Lol. I know a Samsung washer anywhere.

[@eej1983able]

Our old washer used to be a Samsung and would play music lol. It broke after 4 years gaaahhh

[@Just_Call_Me_TK]

Erin ours did too lol. They end up having a recall on it

[@sandralucialini6390]

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. 💪

[@lisagrafton2529]

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.

[@JulieR73]

The change in Mary is so beautiful!!! What a God we have!!!

[@jdl2180]

Why did god do this to her in the first place?

[@haleyguthrie375]

jdl God has plans and reasons greater that we could ever imagine! Everything is under his control and has reasoning!

[@lisacoapstick9741]

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!

[@krisfightingfibromyalgia3099]

What’s next is one of the most difficult questions to answer.

[@Davina91]

?

[@mom2tdks2012]

Kris fighting Fibromyalgia are you on the new fibromyalgia drug?

[@krisfightingfibromyalgia3099]

Depends about wich one your talking about 😊

[@debradonley3825]

Mary, I hope the improvement in your lungs is like the Energizer Bunny. I hope it keeps going, and going, and going.....

[@milliemaxwell5282]

Haha, my laundry is almost done and I heard your machine sing and got up to take mine out lol!!

[@Jackhan77]

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!

[@jenniferbueller2302]

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.

[@digit51]

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.

[@beverlyburris8026]

Good to hear the update!! I believe the Father has BIG plans for you two!! And Ollie that is just TOO SWEET❣️❣️❣️❣️❣️ Love and prayers from Alabama 💜💜

[@The.Plague]

Nice to see someone else from Alabama watching. I never see anyone else from around here comment. I know there's a few, as my ex introduced me to their videos, I just never see them in the comments... I thought Ollie was a pillow again until he moved! Lol...

[@hudsonsailor54]

It is obvious the improvement in Mary's health since starting the new treatment. It is just wonderful to see. May it continue working until there is even a newer and curative medicine.

[@melanie98d]

That is the sweetest paw I ever did saw ?! I'm a poet hehe. So thankful you're able to make these transitions in improved health. Stay strong and way to rep Duke :)

[@lovintexas2730]

Peter and Ollie are matching styles! (kinda)

[@thearmstrongs]

I am doing laundry and I thought that was my washer singing to me! Ha! Jackie from Indiana

[@stephaniehowells2567]

Hi Jackie! I'm a Hoosier as well.

[@thearmstrongs]

Hi Stephanie. We live just north of Muncie. Sort of between Indianapolis and Fort Wayne.

[@stephaniehowells2567]

@@thearmstrongs your not far from me at all. I'm in Pendleton.

[@thearmstrongs]

Stephanie Howells our son is a band teacher at Westfield and he lives close to Castletin area. Small world. Good to “meet” you.

[@stephaniehowells2567]

@@thearmstrongs likewise.

[@aydia689]

You guys are amazing and so positive!

[@fralinsandfriends]

It's good that you keep yourselves so well informed and realize not all is answerable as we may want. I'm sure patiently waiting is something you've learned since childhood. I admire your faith and hope. God Bless. 😀👋

[@lizzieturbeville4089]

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.

[@LexiLooBelle]

I was excited to read that Vertex is also now authorised for use in the UK and will be available within the next 30 days! Exciting times for many CF patients. I pray they have the improvement you've seen Mary! Love Lexi x

[@ajjay457]

You guys are inspiring. Love how Peter is so supportive. Praying for you all

[@lynnrose7562]

It's amazing to see the difference Vertex has made. God bless you Mary.

[@rmjames83]

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)!!!

[@nancieblackburn3176]

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!

[@nightgazer251]

Oh my gosh that’s amazing!!!!!!!!! So happy to hear that you have seen an increase in your health!!!!!! That’s fantastic news. 😀😀😀😃🥳

[@mariaarmstrong1058]

You and your dog are adorable in matching outfits! There a screen shot in there of his face next to yours. But first, This news is the best Christmas gift I will get this year. To know your better Mary, is to reach for the star on the tree and grasp the hand of the Lord. Truly God has a long life planned for you. I can see you as old Aunt Bea. I expect you to be here for a long long time. We can't live on the earth without your infectious smile. Thank you for letting your light shine. I see Jesus in you. ~Mariah

[@shaunjamieson3416]

am very happy for u Mary and the process with the medication 🙏💞💞💞

[@missl1775]

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!

[@susanharris1285]

Anything that's keeps you well , good luck on all your upcoming appointments with bunches of prayers and love

[@jackiehoward7300]

I’ve got a praise report! Yesterday I earned my B.A.

[@missl1775]

Yay you!

[@nancieblackburn3176]

Jackie Howard congratulations

[@kimbo500]

Jackie Howard, CONGRATULATIONS on your accomplishment!!!! WoooHooo!!!!

[@lorisanford8515]

Im so Happy the triple is working so well for you and I pray it keeps working for a long...longgg time to come !!! 😊 I Love You Guys So Much !!!

[@eej1983able]

I'm so happy to see you doing so well, Mary! It is like night and day

[@caprialnichols7659]

Loving the new house vlogs keep it up Mary and Peter

[@rutherpa]

I'm trying to remember when Mary's last course of IV antibiotics ? Seems like ages !

[@kerrimcvinney6081]

Right as they were closing on the house was her last dose of iv antibiotics!!

[@thegypsywagonllp]

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

[@mamakirk2]

Goodnight, Ollie Boy. He is so sweet.

[@angelanetherton8240]

God bless you both!! May you be healed Mary I will pray for you ... Beautiful couple you deserve the best life ever!!

[@babanowa18]

Ollie you little angel. So adorable how he put his paw on your hand, he loves you guys so much.

[@liwmld]

"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.

[@lisaking3050]

You know Ollie is important to you when he gets the couch and you take the floor ❤️

[@laurab6432]

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

[@charityhamilton2873]

Praying for you all the time Mary and Peter

[@sharonmills1013]

Welcome to North Carolina! Wishing you the best health you can have!

[@melvyns1975]

I had the initial first meeting with the transplant team cos my pft's were consistently below 40% and I was having iv antibiotics 3 times a year for about 4 weeks at a time,seemed like I was constantly on them. Then I started symdeco in Feb 2019 and since then have only had 2 courses of ivs in a year and 8 moths and my pfts have stabilised at 40%. I start kaftrio in a few weeks and im hoping for good things,the only concern I've got is my liver but its been OK on symdeco so hopefully OK on kaftrio. Glad to see u r doing well,take care both of u

[@alexcopeland8846]

I have the same washing machine as you😂I hope your health is progressing, you are so strong. You can do this Mary!!🤍

[@s.r.3908]

I am so happy for you guys! Been following you for years and I am always sending good vibes. Before you, I had never heard of cystic fibrosis and it has been very educational. (When your washing machine was singing I legit started humming and went to our washing machine which plays the same song to look whether it was done :D)

[@woodfordtheservicegolden884]

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.

[@theworkathomemama7148]

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

[@thegastroparesisgoofball1030]

I’m so happy for you and hoping you’ll be able to benefit from this medication as long as possible ❤️

[@fevertree1957]

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.

[@kathikamholz1493]

Yes, so excited for u and everyone with cf who gets on this new med

[@Dreamer5211]

HI Guys , thanks for the video - update . I hope all goes comfortably well for you Mary in the weeks to follow , praying it will be a lot easier than last May . I guess the main thing is will Vertex help if you needed an operation ?? ( shorter recovery time ) I am sure you would process that when the time came , hopefully many years down the road. Glad all is stable and well , I hope it continues . Thanks again and CU tomorrow , take care , Gary 

[@jessbatchelor685]

I actually thought my washing had finished until you said that your machine was singing, for a split second I thought you could hear my washing machine 😂 😂

[@penelopepolinsneemeyer4757]

That was a fascinating catch up guys, thank you xxxxxxxxx

[@jennwill80]

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.

[@fredahensley3853]

Would it be safer to have the transplant while your body is healthier?

[@elizabethann5308]

Yes, but there so many people in need of organ transplants that you need to be in a specific place of quality of life and health to be active on the list.

[@nathantatosian280]

Hi Mary and Peter Mary good luck if get a transplant ♥️♥️♥️♥️♥️

[@panic334]

My parents’ washer does that exact same tune.

[@asiawood6264]

This is off topic for the video but when I herd your laundry machine go off I thought it was mine 😁

[@WyntersFrost]

God Bless the both of you!! Praying for you hun :)

[@cathyford6385]

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

[@cagedtigersteve]

I am so happy you are feeling better.

[@stephaniebradley2658]

I am so happy for both of you 🙏🏻🙏🏻

[@sheilashipman7253]

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

[@ChrisVSCysticFibrosis]

This hopefully will have amazing results for you and everyone holding out for this amazing drug, I think most of us are in a similar position where we want to dream about what this medication can do for us! CF is still very real but hopefully... Just hopefully we can all start winning! Keep Strong

[@TOYCANTV]

Watching u from turkey... Best wishes ✌🏻