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The New Coffee Room

  1. TNCR
  2. General Discussion
  3. 9 years ago today

9 years ago today

Scheduled Pinned Locked Moved General Discussion
31 Posts 13 Posters 130 Views
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  • 89th8 89th

    Srsly tho, this happened when I was not on the forum for classified reasons… where were you living at the time, and you mentioned prep at the hospital…were you living in North Carolina?

    Is it possible to describe the before vs after (once the meds wore off)?

    jon-nycJ Online
    jon-nycJ Online
    jon-nyc
    wrote last edited by
    #19

    @89th said in 9 years ago today:

    Is it possible to describe the before vs after (once the meds wore off)?

    There isn’t really a moment where you’re like ‘wow, I can breath again’. It comes back over a few weeks. You sort of have to learn how to breathe again. When you have very little lung function, especially with obstructive lung disease, you stop breathing with your diaphragm and start using these ancillary muscles higher up in your chest and shoulders. This just happens to you over time, obviously not something you do consciously. We actually practiced diaphragmatic breathing in rehab after transplant.

    I do remember one special moment, the day I left the hospital (8/1/16), they took the last chest drainage tube out that day (I started with 7 drainage tubes after surgery). I was waiting to be discharged after they removed the tube and I walked down the hall to say goodbye to another transplant patient that was there. I realized that was the first time in years that I walked 100ft without a tube connecting me to a machine. (Remember I carried an oxygen concentrator 24/7 before transplant).

    Thank you for your attention to this matter.

    1 Reply Last reply
    • jon-nycJ Online
      jon-nycJ Online
      jon-nyc
      wrote last edited by jon-nyc
      #20

      One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.

      Thank you for your attention to this matter.

      Doctor PhibesD MikM 89th8 3 Replies Last reply
      • jon-nycJ jon-nyc

        One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.

        Doctor PhibesD Offline
        Doctor PhibesD Offline
        Doctor Phibes
        wrote last edited by
        #21

        @jon-nyc said in 9 years ago today:

        One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.

        lol that's great

        I was only joking

        1 Reply Last reply
        • B Offline
          B Offline
          blondie
          wrote last edited by
          #22

          Happy Anniversary @jon-nyc . I’m particularly impressed with all your athletic endeavours post transplant. And the multiple trips with your son. And your work with your foundation. And your new lady. You certainly live a full life!

          1 Reply Last reply
          • jon-nycJ jon-nyc

            One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.

            MikM Away
            MikM Away
            Mik
            wrote last edited by
            #23

            @jon-nyc said in 9 years ago today:

            One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.

            Great story, previously unheard.

            "The intelligent man who is proud of his intelligence is like the condemned man who is proud of his large cell." Simone Weil

            1 Reply Last reply
            • jon-nycJ jon-nyc

              One funny story you @89th will appreciate. I got my call on Friday, surgery early Saturday. Monday they took me out of ICU and put me in ‘step down’, a normal room. That room had a TV and that was the first night of the GOP convention of 2016 where Trump was nominated. My nurse, a middle aged African American lady, was in my room at the time and I said “Oh no, I died in surgery and this is hell.’ She cracked up and I got great service from her for the next two weeks.

              89th8 Offline
              89th8 Offline
              89th
              wrote last edited by
              #24

              @jon-nyc Ha, great story about the debate. And thanks for the other insights, really happy for you of course that this all worked out, and glad you were able to make the move to Chapel Hill.

              Was there any part of you that wanted to stay in NC since you had been there for 15 years and your boy was in school? I'd imagine the "this is temporary" feeling never wore off so it was natural to rebound back to NYC.

              And since I'm known for asking too many questions, how was this on Rachel back then?

              1 Reply Last reply
              • jon-nycJ Online
                jon-nycJ Online
                jon-nyc
                wrote last edited by jon-nyc
                #25

                Yeah we always intended to return. Rachel’s job was in NY. We were fortunate they let her work remotely when that wasn’t a thing in her industry. She had to do photo shoots in LA and Paris (her client for a decade was L’Oreal) so my sisters took FMLA and stayed with me on those weeks. It was complicated because I needed a caregiver if I got the call, and we had a six year old. We got babysitters to hang with the boy in summer and after school.

                It wasn’t a huge burden for her otherwise. I could still make dinner and do the laundry, etc.

                Thank you for your attention to this matter.

                1 Reply Last reply
                • jon-nycJ Online
                  jon-nycJ Online
                  jon-nyc
                  wrote last edited by
                  #26

                  We worked it out that when I got the call, my middle sister would leave the that day or the next if it was late. She could get to us in 5 hrs. That way there was someone to be with me in the hospital and someone to look after the boy. Then my older sister would come relieve her after a week. Fortunately they had kind and understanding bosses.

                  Thank you for your attention to this matter.

                  1 Reply Last reply
                  • B Offline
                    B Offline
                    blondie
                    wrote last edited by
                    #27

                    You’re so fortunate to have caring sisters @jon-nyc !

                    1 Reply Last reply
                    • MikM Away
                      MikM Away
                      Mik
                      wrote last edited by
                      #28

                      Complicated logistics.

                      "The intelligent man who is proud of his intelligence is like the condemned man who is proud of his large cell." Simone Weil

                      1 Reply Last reply
                      • A Offline
                        A Offline
                        AndyD
                        wrote last edited by
                        #29

                        👏 Here's to the next 9.

                        Do you know who the donor was? Is it all anonymous like the UK?

                        jon-nycJ 1 Reply Last reply
                        • RenaudaR Offline
                          RenaudaR Offline
                          Renauda
                          wrote last edited by
                          #30

                          Congratulations jon. I am sure there are many other celebratory anniversaries in store for you!

                          Elbows up!

                          1 Reply Last reply
                          • A AndyD

                            👏 Here's to the next 9.

                            Do you know who the donor was? Is it all anonymous like the UK?

                            jon-nycJ Online
                            jon-nycJ Online
                            jon-nyc
                            wrote last edited by
                            #31

                            @AndyD said in 9 years ago today:

                            👏 Here's to the next 9.

                            Do you know who the donor was? Is it all anonymous like the UK?

                            It’s anonymous but you can write to an organization that will forward a letter to the donor family. Then if they choose they can contact you (presumably if you give them your contact info in the letter).

                            Thank you for your attention to this matter.

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