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LIVER & LUNG TRANSPLANT EVALUATION | The Backstory

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  • เผยแพร่เมื่อ 20 พ.ค. 2019
  • Here's the backstory from April 3 when Duke first called about a multi-organ transplant evaluation.
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ความคิดเห็น • 290

  • @thefreylife
    @thefreylife  5 ปีที่แล้ว +206

    We wanted to welcome you guys to listen in on our first thoughts after we found out that we were scheduled for the multi organ evaluation. Thank you for entering this journey and this roller coaster with us.

    • @elizabethholmquist6917
      @elizabethholmquist6917 5 ปีที่แล้ว +3

      I hope thing go well may the Lord Jesus Christ be with and your family

    • @stjernoga
      @stjernoga 5 ปีที่แล้ว +5

      The Frey Life Thank you for letting us in 🙏💕 lots of love and prayers, Sara

    • @LymeDiseaseRadio
      @LymeDiseaseRadio 5 ปีที่แล้ว +2

      OMGoodness! Well, at least you'll be well prepared! Funny thing is, I was just looking to move out of Hooterville and Florida is just getting too expensive so where did I start looking???? DURHAM!!! Well, can't afford DURHAM, but maybe the outskirts! So my offer is....if I'm there and you need a dog walker, babysitter, or anything else, just let me know! Although, I'm pretty-sure you have many other subs that live in the area, but just know, the offer is there! Blessings, Grannie Annie from Maine

    • @darlenehaley6781
      @darlenehaley6781 5 ปีที่แล้ว +1

      God bless ya'll! You are always in my thoughts and prayers. Love in Christ Jesus from Oklahoma

    • @penelopepolinsneemeyer4757
      @penelopepolinsneemeyer4757 5 ปีที่แล้ว

      The Frey Life Guys, Martin and I are here for you for every step of this journey, whatever it looks like. May G-d watch over you both and keep you safe xxxxxxxx

  • @jennyogle7196
    @jennyogle7196 5 ปีที่แล้ว +250

    I actually work in the OR at Duke doing trauma and transplants. We do many multi organ transplants here. If that's where your journey takes you, Duke is a great place! Our transplant doctors are the best. Good luck!

    • @mariekedufresne53
      @mariekedufresne53 5 ปีที่แล้ว +2

      Jenny Ogle that’s where she has been going this past week for evaluation :)

    • @hannahmoore5827
      @hannahmoore5827 5 ปีที่แล้ว +2

      Gypsy thehoneybee she also said “if that’s where your journey takes you” So I’m assuming she did not know Mary has been there

    • @imthinkingmaybe2615
      @imthinkingmaybe2615 5 ปีที่แล้ว

      @Jenny if you are allowed to answer is it normal for someone at Duke to go through a person's chart as quickly as they did Mary's. It seems that we as a chronically ill community are used to a wait for appointments or a doctor's review of our chart. I can't speak as someone with CF because that is not my health issue. Perhaps that is common for CF.

    • @mariekedufresne53
      @mariekedufresne53 5 ปีที่แล้ว

      Gypsy thehoneybee the way she worded it made it sound like she did not know Mary had just spent the week there.

    • @goosewhisperer6275
      @goosewhisperer6275 5 ปีที่แล้ว +5

      @@mariekedufresne53 I think she meant if that's where her journey takes her for the actual transplant, not just evaluations. Didn't Mary say they would be researching/considering more than one possible hospital, for the actual transplant?

  • @halfdeafhalfgay
    @halfdeafhalfgay 5 ปีที่แล้ว +132

    A dear friend of mine with CF got her double lung transplant at Duke at 23 years old. They were so wonderful and cared for her beautifully. I cannot praise their teams enough!

  • @lipstickandleggings
    @lipstickandleggings 5 ปีที่แล้ว +134

    I've had 2 double lung transplants. I know it's scary. I KNOW. However, it has changed my life. It's a big decision but it has made my life as "normal" is it's ever going to be. I feel where y'all are. Mary if you ever want to talk to ask questions from someone who's been there I'm here.

    • @jessamonet2634
      @jessamonet2634 5 ปีที่แล้ว +9

      lipstickandleggings oh my goodness I’m so glad you’re still here and doing great. I hope the same for Mary so much if that’s where life takes her.

    • @mariekedufresne53
      @mariekedufresne53 5 ปีที่แล้ว +4

      lipstickandleggings a friend of mine had her second transplant this past summer. She has CF as well. She’s doing so well now.

    • @imthinkingmaybe2615
      @imthinkingmaybe2615 5 ปีที่แล้ว +1

      Lipstick #1 I'm thrilled for you that you're feeling better and you have at this time a new normal to experience. If I'm out of line here just ignore me. It seems common to have more than one transplant. Does CF eventually attack the new lungs therefore the need for new ones or are there other factors that cause a need to get a second one?

    • @Armylady74
      @Armylady74 5 ปีที่แล้ว

      lipstickandleggings God bless you with a healthy lungs and life!

    • @mom2tdks2012
      @mom2tdks2012 5 ปีที่แล้ว

      lipstickandleggings can I ask why you had 2 lung transplants? Lung Transplant is in my near future. I have 2 rare lung diseases.

  • @michaelabiggs6777
    @michaelabiggs6777 5 ปีที่แล้ว +72

    You have Frey Life family/fans near Duke University if you need anything!!

  • @beccakeith8044
    @beccakeith8044 5 ปีที่แล้ว +23

    It is so amazing to me that someone with the proper knowledge can take organs from one person and put them into someone else and they work just as they're supposed to. What a blessing to be alive during a time that is an actual viable option. AMAZING!

    • @lizagervais8621
      @lizagervais8621 5 ปีที่แล้ว +4

      myname hascake I had a Liver-Kidney transplant almost 5 years ago. It is amazing what surgeons can do now, but life post-transplant takes time to get used to as it is very different from pre-transplant.

    • @bloom959
      @bloom959 5 ปีที่แล้ว

      @@lizagervais8621 it is fascinating. If you dont mind what are something that are different after the transplant?

  • @lifewithachronicallyillmom6862
    @lifewithachronicallyillmom6862 5 ปีที่แล้ว +30

    I couldn’t help but watch Peter as you were talking, Mary. You could just see the love and worry he has for you. As always, praying for you both.

    • @marykowalski7349
      @marykowalski7349 5 ปีที่แล้ว +3

      I noticed the same thing.

    • @imthinkingmaybe2615
      @imthinkingmaybe2615 5 ปีที่แล้ว +1

      I think a lot of partners would love to say "you've been through so much let me take this one for our team" Unfortunately it doesn't work that way and I'm sure he is trying very hard to process this new information.

  • @contrapasso
    @contrapasso 5 ปีที่แล้ว +27

    I live about 30 min away from Durham in Raleigh, NC. Durham is a great place to live. Wide range of housing options, lots of trees, amazing food, and! much less snow lol. If you guys end up moving out here and you ever need anything, let me know!

  • @perucat5045
    @perucat5045 5 ปีที่แล้ว +10

    Gosh, I totally get it when you described the phone call from the hospital.I will never forget the joy of the words from my surgeon who said "we are going to operate" ...It ment life and not death .. a short sentence that means so much .... God lead you to new beginnings xxx

  • @lezup
    @lezup 5 ปีที่แล้ว +8

    I am happy to hear that your doctors realize you needed to be at a hospital that is good at multi organ transplant. Nothing is for sure. Meanwhile in the backseat, Ollie is listening. The fun of moving. I hope Duke can give you some guidance if/when the time comes. Thank you for sharing your journey with us. We are all cheering for you.

  • @kimberlygathings2936
    @kimberlygathings2936 5 ปีที่แล้ว +9

    I love Duke hospital my husband has had surgeries there and everyone and I mean everyone is beyond awesome, I mean when you walk in you are their main concern. Good luck with everything mary you both are in my prayers.

  • @carolyngarrison10
    @carolyngarrison10 5 ปีที่แล้ว +9

    Wow, in hindsight, I see how blindsided you guys were. No wonder it took you weeks to process this. I know you all know this, but God is with you every step of the way. Love you guys.

  • @christinagoss7964
    @christinagoss7964 5 ปีที่แล้ว

    I completely understand where y’all are coming from. My mom had a multi organ transplant. Hers was a kidney and liver due to her non-alcoholic cirrhosis. I can understand the questions, the struggle, and stress of transplants. Now she is almost a year post-op!!! I’m praying for y’all every day!❤️

  • @elizabethmion4595
    @elizabethmion4595 5 ปีที่แล้ว +10

    Mary and Peter, the only two people I will pause 'Friends' for.
    I love you guys so much. Y'all are constantly in my prayers.

    • @thefreylife
      @thefreylife  5 ปีที่แล้ว +1

      Elizabeth Mion 💜💜💜

  • @2listening1
    @2listening1 5 ปีที่แล้ว +24

    6:43 "...of course, vlogging moves WITH us, where ever we move...!" xD love y'all, Mary!!

  • @StefanieRoyMusic
    @StefanieRoyMusic 5 ปีที่แล้ว +43

    This is going to be a very difficult video to watch... but I'm so happy you're sharing your journey. It's real life! Sending love as always.

    • @thefreylife
      @thefreylife  5 ปีที่แล้ว +9

      Stefanie Roy Stefanie, it means so much that you’re willing- thank you. Mary

  • @momzillainnova
    @momzillainnova 5 ปีที่แล้ว

    you are in my thoughts. My step father had Kidney and liver transplant in Charlottesville, VA. Gave us 22 more years with him and ultimately it was not those disease that took him from us. It gives us peace to know that part of him is living on as he was also a donor. Stay positive. Stay as peaceful as you can. Remember to live your life even through the little things. Ive been watching you for so long, and I do not comment often but I just felt compelled to share a little with you today.

  • @mllee2008
    @mllee2008 5 ปีที่แล้ว +8

    This might sound weird coming from a stranger, but because of your videos I feel emotionally invested in your lives. I'm really pulling for you guys! Sending good vibes and positive energy your way. You two are in my prayers. 😀

  • @marilynvalinsky1891
    @marilynvalinsky1891 5 ปีที่แล้ว +19

    Hi
    Can't wait to hear how things went at Duke. I worry about you two daily. Sending many prayers, hugs and love.

  • @lisaemason
    @lisaemason 5 ปีที่แล้ว +11

    Thank you for making these videos so that we understand what is happening. I think it's a very wise idea to have them so you don't have the pressure to vlog while you are going through the week. It must me very taxing and my prayers are with you at this time. Having seen other people go through the transplantation process before (though it was a bone marrow transplant and not multiple organ) I am struck with the immense use of resources the process takes. It is on my heart that as Christians we are commanded to bear one another's burdens. Have you given thought about how we as your community can help bear the burdens that you are going through? It would be an honor for us to do so.

  • @sunnya8
    @sunnya8 5 ปีที่แล้ว +8

    I was just wondering yesterday why your current hospital (and a very reputable one at that) couldn’t do the transplant. Thank you for explaining it (and this whole process) to all of us & for always including us in your lives. Love you all. ♥️🙏🏽♥️♥️

    • @katieminnick2813
      @katieminnick2813 5 ปีที่แล้ว +4

      sunnya8 Yup, transplant is very complex. Not every center specializes in every type of transplant. I am a bedside transplant nurse, and my hospital specializes in liver & kidney transplant, we don’t do heart, lung or other organs. People often have to move or travel for a center that fits their needs. I often see patients who live as far as nine or ten hours away from our hospital. Thinking of you Mary as you walk through this journey!

  • @VensVibrantNailsandBeauty
    @VensVibrantNailsandBeauty 2 ปีที่แล้ว

    "I'm pretty sure my body would break that contract."
    About the most relatable sentence ever about chronic illness! I laughed so freaking hard at this!

  • @mckaylagrace8962
    @mckaylagrace8962 5 ปีที่แล้ว

    Duke is so good, they are one of the best. You are in good hands. God is so good. We are here with you.

  • @danic4721
    @danic4721 5 ปีที่แล้ว +3

    Ahhh Peter. I’ve seen that look in my husbands eyes. Of course, my heart goes out to both of you, but that look breaks my heart. You guys just want to protect us, yet when it comes to our health, there isn’t much you can do. Praying for you both, and what each of you is feeling separately and together. God’s timing is perfect!

  • @bethbupp8023
    @bethbupp8023 5 ปีที่แล้ว +7

    Thank you for letting us come on this journey with you and Peter. God is differently with you both. Strength love and togetherness and family.

  • @hayleymarse2853
    @hayleymarse2853 5 ปีที่แล้ว +22

    You guys make me so happy. Your joy even in rough times is so inspiring.

  • @shellcshells2902
    @shellcshells2902 5 ปีที่แล้ว +8

    Poor Peter ... looks concerned. God is so faithful 🙏🙏🙏
    And I know that you know God is walking alongside you.
    Jeremiah 29:11

  • @yaeliabel901
    @yaeliabel901 5 ปีที่แล้ว +15

    I feel for you Mary. This is the scariest part. When I was at the stage you are now I was on a ventilator. I wanted to take my machine and run away.

  • @blackroselady8723
    @blackroselady8723 5 ปีที่แล้ว +4

    You stole my heart 2 1/2 years ago, when I started watching your videos. I pray for you every single day and I'm so impressed by your strength and your believe in god! Do you have a playlist with all the wonderful songs about faith and gods plan like "what merci did for me"?

  • @fevertree1957
    @fevertree1957 5 ปีที่แล้ว +4

    Getting through the evaluation will give you such knowledge - and knowledge is power. You seem to have found a fabulous place, and best place & team for success. Ball is rolling....roll with it & see where it goes....you will process as you go. I feel for you and for your parents/family in this journey....still a way to go.....love to you both from Scotland - we are all honoured your sharing this. ❤

  • @ardensuns
    @ardensuns 5 ปีที่แล้ว +15

    you’re so strong mary, i hope everything is always getting better for you and your family 💗

  • @marykowalski7349
    @marykowalski7349 5 ปีที่แล้ว +5

    Thank you for adding this step to your journey, Mary and Peter. I appreciate you both so much for taking us along. We - your virtual vlog family - care deeply for you both and wish you well on this net phase of your life together.

  • @BaskentBakkal-wz2ds
    @BaskentBakkal-wz2ds 7 หลายเดือนก่อน

    This track engrosses me completely, absolutely perfect!

  • @munk828
    @munk828 5 ปีที่แล้ว +1

    I love duke. I don’t have CF but I was diagnosed with Hip Dysplasia in December and Duke did my surgery! They are amazing!

  • @grandmasewhappyhomestead187
    @grandmasewhappyhomestead187 5 ปีที่แล้ว

    Peter and Mary your strength is amazing!!! Peter your love for Mary is an example of Christ's love for his children. You're touching lives through this journey and know that my daughter and I here in Minnesota you are in our thoughts and prayers. I'm Amazed of how you walk this out with such beauty Mary

  • @braedentaylor6463
    @braedentaylor6463 5 ปีที่แล้ว +9

    I am so close to that hospital, it is such a great place and they are all so kind!!!!! Love you both so much

  • @almostfamousoxo
    @almostfamousoxo 5 ปีที่แล้ว +3

    The way you two have gone about sharing this part of your journey has been endlessly graceful. I feel so privileged to witness your processing of this, but I'm so happy you took time to process privately before sharing with all of us! Some things should remain sacred, and you deserve all of the mental space you need.

  • @jodiemorgan6809
    @jodiemorgan6809 5 ปีที่แล้ว +1

    Hi. I wanted to let you guys know how much I appreciate you vloging about your transplant journey. I have non-alcoholic cirrhosis of the liver and this may very well be the path I go down. Even though I’m Australian, I’m learning a lot. It also helps so much having someone else who understands the fears and uncertainties of this procedure. So thank you so so much. ❤️

  • @exactly150
    @exactly150 5 ปีที่แล้ว +13

    We are moving to that area also to be near Duke. In the future I may need a liver transplant.

  • @sophieleanna9391
    @sophieleanna9391 5 ปีที่แล้ว +3

    The way you guys share your journey is so real and genuine and raw. There is no one on TH-cam or even in my personal life that has inspired me more that you guys. You are always in my prayers🙏🙏🙏💜

  • @blairmarie9872
    @blairmarie9872 5 ปีที่แล้ว +7

    Prayers and love. We are all here for the 3 of you!! 😘😘😘😘💜💜💜💜💜🌹🌹🌹🌹🌹

  • @scarbrochristy5218
    @scarbrochristy5218 5 ปีที่แล้ว +2

    My prayers are always with you Mary I know god is looking out for you🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

  • @Judymontel
    @Judymontel 5 ปีที่แล้ว +1

    I find it difficult to express the extent of my gratitude to you both for thinking through, doubtless discussing a lot, working and planning and filming and editing so that we could accompany you guys on this stage of the journey in a way that respects both you and your independence and privacy and us viewers and our care and concern. I feel comforted, respected and cherished as I reflect on the care that has gone into the videos I've been watching this week plus, while knowing that all this time you are dealing with some very big challenges. Thank you for you faithfulness to us in the midst of all this. I can't tell you how much it means to me.

  • @audreywelcyng7787
    @audreywelcyng7787 5 ปีที่แล้ว +7

    Wow, that’s a lot. Keeping you guys in my prayers. Good luck Mary, I’m sure it will go great no matter what happens.

  • @Aintnohollabackgirl
    @Aintnohollabackgirl 5 ปีที่แล้ว

    Better now than when you are in the hospital waiting for one... I'm an organ donor and hope everyone shares the gift of life... Prayers for your body minds and spirits...

  • @findingvikki7469
    @findingvikki7469 5 ปีที่แล้ว

    My nephew did his neurosurgery residency at Duke and says nothing but good things about the hospital. I told him about you and this and he said you are in very good hands and are at one of the best. The only reason he left there was to come back home to,Florida to raise his family near family. We are praying for you.

  • @SweetXOXO31
    @SweetXOXO31 5 ปีที่แล้ว +11

    You guys are awesome! And so blessed to have each other and an amazing, knowledgeable support person in peter who Gets it!!! ❤️

  • @lynnrose7562
    @lynnrose7562 5 ปีที่แล้ว +7

    I saw the title and didn't know what to expect. Thank you for sharing your journey. God bless you both.

  • @email60509
    @email60509 5 ปีที่แล้ว +1

    Oh my goodness guys, I wish for you that all of your questions were answered. I pray that the testing was kind to you Mary and that you felt held throughout. I wish .....for you both that you find your way along your next chapter of life together, feeling held up with encouragement support and the abundance of LOVE that I, along with many others are sending you right now!!! A hug and well done to you both!!! You're both Incredible!!! As you've both said you will and have made it through, so proud of you Freylife!!!! today and tomorrow and for all of those days afterwards to come. Find peace xxxxx

    • @JodiBeans411
      @JodiBeans411 5 ปีที่แล้ว

      Beautifully said. 🌹

  • @nancywilliams6777
    @nancywilliams6777 5 ปีที่แล้ว +1

    I hope Duke said YES! Durham is an awesome place to live. Hope you move here and I get to know you.

  • @charliecharlton9782
    @charliecharlton9782 5 ปีที่แล้ว +1

    I've been watching your vlogs for many years now. Wishing you nothing but the very best. Here's hoping everything goes as smoothly as your sister's did. 🌿⚘🌷⚘🌿

  • @wagal50
    @wagal50 5 ปีที่แล้ว +5

    Mary, I know it is so scary. I pray for you and Peter. I wish and pray that God would heal your lungs and liver. Love you!!!

  • @mom2tdks2012
    @mom2tdks2012 5 ปีที่แล้ว

    Look how cute Ollie is in the back the first few mins at the start.

  • @catloverKD
    @catloverKD 5 ปีที่แล้ว +1

    You did it! God has you through everything. Sometimes He will answer prayers in unexpected ways because it's necessary for what we can't see or aren't ready or able to do for ourselves.

  • @Kristen_michelle0515
    @Kristen_michelle0515 5 ปีที่แล้ว

    I had my liver transplant last sept 2018 at uf shands in Florida, they are great and do multi organ transplants. I’m actually going through evaluation for a kidney transplant now. It’s scary and nerve racking, but you go through all these emotions and eventually find peace with everything. And I know that’s easier said than done. But know that you have each other and god to help you through! You guys are always in my prayers! 💚

  • @r0ck0nlcrss16
    @r0ck0nlcrss16 5 ปีที่แล้ว +2

    If y'all end up at Duke please reach out to your community here so we can embrace you and help all we can. I'd love to introduce you to my church.

  • @lynnaandj1
    @lynnaandj1 5 ปีที่แล้ว +5

    I keep staring at Peters glare; as if he’s thinking and maybe even over thinking. He, especially, seems overly worried in this.

    • @ecologist_to_be
      @ecologist_to_be 5 ปีที่แล้ว +3

      It understandable as sadly transplants have a lot of risks.

  • @jennifersuarez9204
    @jennifersuarez9204 5 ปีที่แล้ว +3

    Mary and Peter, y'all are such an inspiration to others out there battling illness and just going through everyday life. I love how God is using y'all to reach others like myself to help see the joy in the moment. Just like yours you mentioned in the video, he needed you to get that call at that moment that's why your phone rang. It's all in his timing and you've been in many of our prayers this week during your trying week of evaluation. Thank you for taking the time to do these videos and share your joy with the world.
    Love from Texas

  • @emilyjung530
    @emilyjung530 5 ปีที่แล้ว

    Your reaction reminds me of when I got the date of my spine surgery - I was totally blind sided. It was my first consultation with the surgeon and they already had me signing consent forms and scheduling the surgery. It was shocking and definitely made it more real. You and Peter will be in my prayers ❤

  • @heidimiele6835
    @heidimiele6835 5 ปีที่แล้ว +3

    Hang onto your seats cause I have a feeling God is going to expedite this so much faster than you could even of thought he’s preparing and paving the way for your future that he holds in the palm of his hand so gently and lovingly. I am so ecstatic for you I pray there’s a day that you take the deepest breath in your body is oxygen needed unbelievably well and you feel amazing and you can have the freedom to go win do you things and enjoy every ounce of life you have on this earth until the day God called you home. Much love from New Hampshire keeping you in my prayers❤️

  • @KiKi-bd8gu
    @KiKi-bd8gu 5 ปีที่แล้ว

    I hope you guys are ok. Im sorry your in pain Mary and im sorry Peter. I can see how tough this is to process.

  • @megananibal9510
    @megananibal9510 5 ปีที่แล้ว

    I know a couple of transplant nurses at Duke, I would for sure go there!

  • @eagoodwin1
    @eagoodwin1 5 ปีที่แล้ว

    Thank you for opening your hearts and minds to share this journey with us, wherever it goes. This is a HUGE moment in your life and you are showing so much strength and faith. As a viewer, I am feeling my own emotions and I can’t even imagine the thoughts and feelings running through your head all day, every day. This is your real life. You truly are a warrior. Thank you.

  • @kittymervine6115
    @kittymervine6115 5 ปีที่แล้ว +5

    I am like everyone else, ready to hear about how the week did go... but yes one thing I have learned is that THIS IS NOT A CURE! Indeed every medication and treatment, comes with some challenges and risk.

  • @erinfox4025
    @erinfox4025 5 ปีที่แล้ว

    I have been continually praying for you this week. I have faith that everything will fall in place for your journey. Moving, transplant etc...

  • @Sarah-tm4nn
    @Sarah-tm4nn 5 ปีที่แล้ว

    Mary and Peter thank you for taking us on the journey. You made it through the testing week!!😃 #TeamFrey is here for you guys.

  • @imogenoliver
    @imogenoliver 5 ปีที่แล้ว

    I know someone that had a double lung transplant and the process is so different between Australia and America. Although I fully expected that. Love Mary you’re doing great 👍🏼

  • @emilywilliams3385
    @emilywilliams3385 5 ปีที่แล้ว

    When Peter said “who you gonna call” I just had “ghostbusters” came to mind! Terrible I know serious subject! Love you Mary and peter sending blessings xxxx

  • @madifeder2137
    @madifeder2137 5 ปีที่แล้ว

    I live a couple of hours outside of Durham and it’s truly an amazing area. I’m in nursing school and I would love to work in the research triangle (Chapel Hill, Raleigh, Durham), it’s the medical hub of the east coast basically. Duke is really among the best hospitals in the country. They only take the very best nurses and physicians. Durham is also an incredible city, I can absolutely see you two fitting in there. Lovely people.

  • @rmjames83
    @rmjames83 5 ปีที่แล้ว

    This video does clarify some things for me, as when y’all posted the “moving to another hospital” I was quite shocked. I totally get it wanting to plan (as much as possible) for the future-it seems you guys were just as shocked as some of us, with them asking u to come in for a full evaluation. Whatever may happen, & whatever lies ahead-we will be there, to walk the path, right beside u both.

  • @krisztinakessel6869
    @krisztinakessel6869 5 ปีที่แล้ว +20

    Mary has beautiful skin!!

  • @mclugston5
    @mclugston5 5 ปีที่แล้ว

    Kierkegaard said you can only understand life by looking back but you have to live it going forward. Good words to live by and understand the Lords timing.

  • @BNHAalltheway
    @BNHAalltheway 5 ปีที่แล้ว +5

    Mary You are so strong so are You Peter God is with both praying for You guys sending love God Bless

  • @rentechpad
    @rentechpad 5 ปีที่แล้ว

    One of the hardest thing we see patients dealing with at out transplant center which does multi-organ transplants and we are the transplant referral center from Montana to Alaska andwe wlso get people from further away coming to us as they like our numbers when it comes to certain organ transplants, is the relocation factor. Many people do it many different ways from the patient and a family member coming to stay, to families making a total relocation with a job transfer or leaving a job and getting a new one to sometimes just the patient relocating until the time they are higher on the list also. Often the fact that it's not just when teh time comes that teh organ your transplanting needs to go, but also when the body is still in shape to handle the rigors of a transplant even if the organ has not totally deteriorated and mandates the transplant. most people assume that they get listed when the organ they know if failing gets to a certain level and is not going to get better no matter what, but if we always waited that long the body trying to compensate for that failing organ has gotten to a place where its not in good enough shape for the transplant. So its often a balancing act of knowing when the time is right as we never want to be in a place that the organ is in bad enough that you would be top of the list only to have the doctors decide that the rest of the body has a poor chance of pulling through a transplant and it would be a case of using a healthy organ on someone who is not going to survive the transplant even with a new organ working perfectly as everything else just was worn down trying hard to maintain things. So while TV drama show you that person who finally gets really sick and teh organ is failing and they are saved by the transplant - its not how it really goes because usually at that point the patient would be off the list because of tehir overall condition. So once patients are committed to a center they need to be relocated so they can be treated and cared for and monitored so when the time comes it can happen when it's at the best time to be successful. this means a patient can be at a center for months or a year or longer before they are actually ready to be listed and then they could be on the list for months or days depending on what organs become available and when and how their health is doing. Then there is the recovery time so that even once they can go 'home' its to where they live locally and they are expected to stay close to the center and receive their initial post transplant care with the team that was seeing them before and through the transplant. How long that could be is often anyone's guess. i have seen patients that are wanting to go back to tehir original home be able to transfer their care to specialists in that area, with just phone consults within a couple of months by many more have a rough first year post transplant especially if they have issues that are not "cured " by the transplant. If you have a bad heart and nothing else wrong or a bad liver and no other disease and one the organ is transplanted there is really no other problems other than rejection you have to deal with but if you have a medical issue that is not 'cure' by getting a new organ then it can often be a rocky first year. Many people have the luxury of being able to relocate permanently and feel that is the best for their situation while other prefer to think of it as a temporary move and have no intention of not going back 'home' and often are not quite ready for teh fact that they can't just leave the hospital after the transplant and got 3 states away and let their GP handle everything. So the whole fact about relocation is a serious one to have very early on and what relocation will look like to you and to have some serious talks with team evaluating you and have them give you the time frame from the best possible short term time to the worst case time frame of you needing to be at the center. They do understand what the logistics of relocation look like and what information you really need to make you best decisions about it. Its best not to leave it until "we see what happen" because that could then be a decision you do not really have enough time to make calmly and with less stress. If you plan to ask an employer to see about a compassionate job transfer that employer needs enough time to pull all the string to make that happen. If you need to find a new job in that area then you have that to work on and get situated before you make the move. It can either be a mad scramble which adds a ton of stress and uncertainty to something that is already horribly stressful and filled with its own uncertainty so the better you are able to decide what a relocation will look like to you and put that into motion once your accepted at a transplant center the more chance you will be able to relocate with the least amount of stress as possible. Its always better to deal with something you know will be hard when you are also not having to deal with something else equally as hard at the same time.

  • @eliasporter39
    @eliasporter39 5 ปีที่แล้ว +2

    Peter: who are we gonna call?
    Me: Ghost Busters!

  • @Savvy_lurker_14
    @Savvy_lurker_14 5 ปีที่แล้ว +5

    Love you both so much! You are so strong, we are with you on this journey!

  • @SuperMissblueeyes
    @SuperMissblueeyes 5 ปีที่แล้ว

    You guys are a great team! You're such a great example of how a married couple should be, including making God the centre of your lives & your relationship. You have not only helped me with my own chronic illness journey, but you have also helped me with my walk with God. Thank you very much. I look forward to spending Eternity with you & all my other brothers & sisters in Christ. I look forward to telling you there how much you've helped me here.

  • @kaylabarnes
    @kaylabarnes 5 ปีที่แล้ว +2

    Y'all are so strong! Prayers as you continue through this hard time.

  • @jaytee2642
    @jaytee2642 4 ปีที่แล้ว

    Wow, so overwhelming!!
    I know this is months later, but I found myself holding my breath and tensing up throughout this video.
    You had a lot of scary information to process. 😕
    ♥️♥️♥️♥️♥️♥️♥️♥️♥️

  • @gthornton3
    @gthornton3 5 ปีที่แล้ว +1

    Sending prayers y’all’s way. I know you have already been through the evaluation and praying for the best results. I know this is a life changing Decision. Love your channel.

  • @scarbrochristy5218
    @scarbrochristy5218 5 ปีที่แล้ว +7

    God will guide you to the right hospital just listen to the voice speaking to you in your head and heart love you both god bless you a million times 🙏❤🌷

  • @sandrabentley1420
    @sandrabentley1420 5 ปีที่แล้ว +1

    Great video. Very frank and open and I'm sure it will help many people. You are still young Mary, if you need a triple transplant, It's good that you're body is as strong as possible. I know that with the evaluation and much prayer, you will come to the right decision for you. I hear so many successful stories after transplant for CF patients, you will be no different!!

  • @Jamie-tk9dg
    @Jamie-tk9dg 5 ปีที่แล้ว +1

    I'm sure you both are scared and that phone call just made it more real buy God knows what he's doing and he's right there with you both and your families right now. I love you both. 🙏❤️

  • @maryreynolds5310
    @maryreynolds5310 5 ปีที่แล้ว

    I know your scared darlin’, my bff, she too is going to have a double lung transplant. I’m scared as well. One thing I know is you Mary, and my friend will of course not be alone. What comforts me is knowing our sweet father above will be holding you both along the way. You will get through this, and you will be put at ez, and you will be so very loved. Mary, you have come along way! When you are all healed from this, you have a whole new journey that awaits. So many new things ahead that God has planned for you. So get ready Mary...it’s going to be FANTASTIC!
    Much love to you and Peter both
    xoxo

  • @brandyhagler3138
    @brandyhagler3138 5 ปีที่แล้ว +1

    Mary and peter yall are in my prayers. Mary its so scary love all 3 of yall. Just keep being yourself happy funny joyful. Give it to god cuz he got this

  • @xandrayoung9186
    @xandrayoung9186 5 ปีที่แล้ว +5

    Love you guys! Keeping you in my thoughts and prayers!!! Good luck on the journey forward! ❤️

  • @Judymontel
    @Judymontel 5 ปีที่แล้ว

    oh I don't know. I feel like that phone call meant everything changed in terms of "what is our next step"? You could think your next step is to think about potting soil. This phone call means you're focusing on multi-organ transplant evaluation in VERY concrete terms and maybe potting soil recedes a bit in importance. I salute you guys and I'm SO SO grateful to you for sharing these moments with us. I find it so grounding. In so many ways. Many, many thanks.

  • @morgenabel7949
    @morgenabel7949 5 ปีที่แล้ว

    I never stop praying for you guys! May the Lord help you in your journey!

  • @shannonhammond9382
    @shannonhammond9382 5 ปีที่แล้ว

    The name of the game is always visiting and revisiting it, it seems. You always encourage me and are always a steady shoulder to cry on all at once. Love you guys! ❤️

  • @lisameehan1880
    @lisameehan1880 5 ปีที่แล้ว

    I went thru the whole transplant thing with my sister for NASH (probable d/t autoimmune reaction after being in Dominican Republic on vacation) with her liver & unknown separate blood clotting problem. We live in Bostonu (surgery there) & she was fast tracked/put on list after leg hemorrhage. The eval process is long but d/t complications her MELD score rose to the top. You went thru it all your sister so you have better idea re it. I wish we had researched more, got more opinions etc. You are both awesome advocates about your health/Mary you know your body so well. It’s so scary I know. I’m sure you will look at all the options & make the best decision when the time comes. We didn’t have as much time to prepare with my sis. You’ll be in my prayers 🙏🏻

  • @jodeming5088
    @jodeming5088 5 ปีที่แล้ว

    My goodness guy's that's alot yo sort they. You're so precious both of you. Sending lots of love & many prayers to help you through this difficult time. God has a plan and will be with you every step of the way . Ty for sharing and taking all of us along. Love you's including Sir Ollie

  • @bionicprincess8008
    @bionicprincess8008 5 ปีที่แล้ว

    I can’t imagine how scary this must be for you both and your families. There is nothing worse than not feeling in control. Unfortunately, this is a situation when you must rely on your team to give you the best advice and of course, your faith in God. You can do this and you will come out of this much better than you are today. It is nothing short of a miracle we live in a time when organ transplants are possible. Please don’t put this off due to overwhelming fear and you become more frail. You have been fighting so hard for so long. You have done all that is possible to push this into the future. You have so much support and love that I know you cherish. God will see you through this. Please reach out if there is anything your supporters can do to help. Sending you lots of love & hugs 💗

  • @amyseaden9069
    @amyseaden9069 5 ปีที่แล้ว +1

    Surprised Boston doesn’t have a hospital with all the great medical centres. Always surprised at the transplant in the US where you have to find a hospital to take you on. Very different than most countries.

  • @triciaann4086
    @triciaann4086 5 ปีที่แล้ว

    Mary your such a strong lady! God is with you both that I know! I'm praying as I always have for you through this journey. If he brings you to it he will see you through it remember that! Much love to you both....🙏❤🙏

  • @rosemarys2465
    @rosemarys2465 5 ปีที่แล้ว

    Thank you for sharing your thoughts, I can only imagine how this whole process is! You are in my prayers along with the doctor team.

  • @konnarachmani1942
    @konnarachmani1942 5 ปีที่แล้ว

    Here in Greece we need to move to a different COUNTRY in order to transplant so I get you so much about the whole moving to a different state thing

  • @emepleez
    @emepleez 5 ปีที่แล้ว +1

    you're so lucky to have each other :)

  • @TheGoldensaddlebred
    @TheGoldensaddlebred 5 ปีที่แล้ว

    How can I write this briefly. I was sent for a consult, not CF, but in all likelihood my specimen was negative. Show up 8AM Monday. I called back to ask how long appt. was for my driver, 7 DAYS!! After taking specimens from my entire body. Both my pcp and I were told a consult first, but "the team" signed me up for "the works" and I'd need 24/7 caretakers, 😱 All I'm saying is take things "at your pace" not the hospitals. Do not let them drive over you, their goals are different then yours. Everyone is different you may be fine from an accident but stub your toe and cant cope. It's okay, just breath in ~ out ~in~ have tea & oreo ~ out, do what U can, when U can, ~ in ~ out ~ slow & steady ~ U R in our thoughts ~ Oliver too!

  • @mistycgrimm
    @mistycgrimm 5 ปีที่แล้ว

    Praying for you, Mary! You too, Peter! 🌷🌷🌷

  • @francesmacdonald2234
    @francesmacdonald2234 5 ปีที่แล้ว +1

    There’s Ollie! Did not expect him.