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The New Coffee Room

  1. TNCR
  2. General Discussion
  3. 5 years ago tonight

5 years ago tonight

Scheduled Pinned Locked Moved General Discussion
35 Posts 19 Posters 220 Views
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  • F Offline
    F Offline
    Friday
    wrote on last edited by
    #23

    Oh.

    Re-reading that made me so nostalgic. I really miss all those people.

    Jon, congratulations on your 5 year anniversary.

    1 Reply Last reply
    • KlausK Offline
      KlausK Offline
      Klaus
      wrote on last edited by Klaus
      #24

      Wow. Almost everything seems to have changed within five years. For instance, Mik wrote at the time:

      He's young, strong and smart.

      1 Reply Last reply
      • KlausK Offline
        KlausK Offline
        Klaus
        wrote on last edited by
        #25

        Has anything significant about treatment options changed/improved in the last 5 years? Is kidney failure an issue at this point?

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

          Not really and yes. I’m already at stage 3 CKD. It’s very common for lung transplant patients to need a kidney at some point.

          Only non-witches get due process.

          • Cotton Mather, Salem Massachusetts, 1692
          1 Reply Last reply
          • AxtremusA Offline
            AxtremusA Offline
            Axtremus
            wrote on last edited by
            #27

            Congratulations!
            Glad we get to have you with us for these extra years!

            1 Reply Last reply
            • jon-nycJ jon-nyc

              @lufins-dad said in 5 years ago tonight:

              5 years is actually a huge mark for transplants, isn’t it?

              It’s not an out-of-the-woods sign like with some cancers. The risk of dying from infection or rejection is pretty stable and pretty material year after year.

              Lung transplants have the worst prognosis of all the solid organ transplants. Median survival is something like 5.8 years. I should do much better than that though.

              George KG Offline
              George KG Offline
              George K
              wrote on last edited by
              #28

              @jon-nyc said in 5 years ago tonight:

              Lung transplants have the worst prognosis of all the solid organ transplants. Median survival is something like 5.8 years. I should do much better than that though.

              I may have mentioned this to Jon, or perhaps posted publicly....

              About 6 years ago, I was giving "anesthesia" for an organ harvest. If someone was an organ donor, a team would come from one of the teaching transplant centers in Chicago, and harvest the organs that were suitable for transplant. My job was to keep the patient "alive" - hemodynamically stable and well oxygenated while they took the organs that needed a blood supply. Once they clamped the aorta, and the heart stopped, I was done, and I'd leave. The team would spend another couple of hours after I'd gone.

              Anyhow, the surgeon was a pleasant lady from Northwestern. After I was "relieved," and she was waiting for someone else to harvest the liver, I believe, I pulled her aside and told her that I have a friend who needs a lung transplant, and told her the disease.

              "So, how do these folks do?"

              "⅓. ⅓. ⅓," she said. "One out of three do great ( ~ five years), one out of three do so-so, with multiple relapses/rejections, and one out of three do crappy."

              "Now look here, you Baltic gas passer... " - Mik, 6/14/08

              The saying, "Lite is just one damn thing after another," is a gross understatement. The damn things overlap.

              1 Reply Last reply
              • brendaB Offline
                brendaB Offline
                brenda
                wrote on last edited by
                #29

                Wow. Five years already. Our Jon will chart new territory for his own version of a long hauler, living an extraordinary number of years post transplant.

                Congrats, Jon! Here's to many more years. 🍺

                RichR 1 Reply Last reply
                • Catseye3C Catseye3

                  Was that the photo of Jon either kissing or being kissed on the cheek by . . . the other guy? Great shot!

                  89th8 Offline
                  89th8 Offline
                  89th
                  wrote on last edited by
                  #30

                  @catseye3 said in 5 years ago tonight:

                  Was that the photo of Jon either kissing or being kissed on the cheek by . . . the other guy? Great shot!

                  Wow 10+ years, how time flies. And yes, Jon was kissing me on the cheek.

                  I still haven't washed that cheek. 😍

                  1 Reply Last reply
                  • jodiJ Offline
                    jodiJ Offline
                    jodi
                    wrote on last edited by
                    #31

                    5 years. So incredible. I remember the thread, but maybe not here, on the other board? I don’t remember what I was doing (but we had just moved to Maine, so I was probably overwhelmed).

                    1 Reply Last reply
                    • kluursK Offline
                      kluursK Offline
                      kluurs
                      wrote on last edited by
                      #32

                      I just remember that for a couple of days, all of us were holding our collective breath waiting/praying/hoping to hear. I also remember thinking that Rachel must have really had it rough. And then wonderful news.

                      markM 1 Reply Last reply
                      • kluursK kluurs

                        I just remember that for a couple of days, all of us were holding our collective breath waiting/praying/hoping to hear. I also remember thinking that Rachel must have really had it rough. And then wonderful news.

                        markM Offline
                        markM Offline
                        mark
                        wrote on last edited by
                        #33

                        @kluurs said in 5 years ago tonight:

                        I just remember that for a couple of days, all of us were holding our collective breath waiting/praying/hoping to hear. I also remember thinking that Rachel must have really had it rough. And then wonderful news.

                        +1

                        1 Reply Last reply
                        • RenaudaR Offline
                          RenaudaR Offline
                          Renauda
                          wrote on last edited by
                          #34

                          I was on a break from the internet (and pretty much all contact with the outer world) at the time bush camping in BC. I actually didn't find out about the surgery until around Xmas time when it was mentioned in passing on another thread.

                          The main thing is that you, Jon, have done remarkably well healing and adapting to your new lease on life. Congratulations to you and your family.

                          Elbows up!

                          1 Reply Last reply
                          • brendaB brenda

                            Wow. Five years already. Our Jon will chart new territory for his own version of a long hauler, living an extraordinary number of years post transplant.

                            Congrats, Jon! Here's to many more years. 🍺

                            RichR Offline
                            RichR Offline
                            Rich
                            wrote on last edited by
                            #35

                            @brenda said in 5 years ago tonight:

                            Wow. Five years already. Our Jon will chart new territory for his own version of a long hauler, living an extraordinary number of years post transplant.

                            Congrats, Jon! Here's to many more years. 🍺

                            here here! 🍺 🍺

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