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Dan Hughes

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@danhughes

On August 17, 2020, I got the call to come to the Hospital, a lung set had been identified that fit my criteria. The next day at 5 pm a 6 hour operation to swap the lungs. I am still in the hospital on September 1, due to slow drainage from 4 chest tubes , hopefully Friday . View
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  • Profile picture of Dan Hughes

    Dan Hughes posted a new activity comment 2 years, 6 months ago

    Charlene and Mark
    I had a longer than normal Hospital stay, due to my excessive Juiciness! The 4 chest tubes would not stop filling my Juice boxes! So the hit me with 3 days of mega steroids in IV form. Seemed to do the trick, ok so now I have been crying (I’m not a crier) just the weirdness of the drug.
    I look over at screen and see topic “…[Read more]

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    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 6 months ago

      Hi @danhughes

      Thank you so much for the update and letting us know how you’re doing. I’ve been thinking of you!

      Glad the IV steroids helped with the “juiciness” – Ha! I’ve never heard of that term coined before but hope the weird side effects are wearing off for you, along with the potential tremors. Have you been diagnosed with diabetes since…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes posted a new activity comment 2 years, 6 months ago

    Thanks for all of your support over many years.
    I’m still going to chime in on topics that I can provide some guidance.

    We wanted to go to the conference in Texas , but could not swing it. I would have loved to meet Carlene, you write excellent articles.

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    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 6 months ago

      @danhughes

      Hi Dan,

      How is the recovering going? I hope everything is still going in the right direction — I’ve been thinking of you!

      Please do continue to chime in and share experiences with us and the forum, now from the other side of lung transplantation. Your advice would be very valuable to many of us! I would have loved to have met you…[Read more]

      • Profile picture of Dan Hughes
        Dan Hughes replied 2 years, 6 months ago

        Charlene and Mark
        I had a longer than normal Hospital stay, due to my excessive Juiciness! The 4 chest tubes would not stop filling my Juice boxes! So the hit me with 3 days of mega steroids in IV form. Seemed to do the trick, ok so now I have been crying (I’m not a crier) just the weirdness of the drug.
        I look over at screen and see topic “…[Read more]

        • Profile picture of Charlene Marshall
          Charlene Marshall replied 2 years, 6 months ago

          Hi @danhughes

          Thank you so much for the update and letting us know how you’re doing. I’ve been thinking of you!

          Glad the IV steroids helped with the “juiciness” – Ha! I’ve never heard of that term coined before but hope the weird side effects are wearing off for you, along with the potential tremors. Have you been diagnosed with diabetes since…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes posted an update 2 years, 6 months ago

    On August 17, 2020, I got the call to come to the Hospital, a lung set had been identified that fit my criteria. The next day at 5 pm a 6 hour operation to swap the lungs.

    I am still in the hospital on September 1, due to slow drainage from 4 chest tubes , hopefully Friday .

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 6 months ago

      Great news Dan, keep up the physical activity. Take care, Mark.

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 6 months ago

      @danhughes

      Hi Dan,

      Congratulations on your transplant — I am so happy for you and thank you so much for sharing this excellent news! Please keep in touch on how you’re doing, and sending you many prayers and much love in your recovery. I’m so happy for you! 🙂
      Charlene.

      • Profile picture of Dan Hughes
        Dan Hughes replied 2 years, 6 months ago

        Thanks for all of your support over many years.
        I’m still going to chime in on topics that I can provide some guidance.

        We wanted to go to the conference in Texas , but could not swing it. I would have loved to meet Carlene, you write excellent articles.

        • Profile picture of Charlene Marshall
          Charlene Marshall replied 2 years, 6 months ago

          @danhughes

          Hi Dan,

          How is the recovering going? I hope everything is still going in the right direction — I’ve been thinking of you!

          Please do continue to chime in and share experiences with us and the forum, now from the other side of lung transplantation. Your advice would be very valuable to many of us! I would have loved to have met you…[Read more]

          • Profile picture of Dan Hughes
            Dan Hughes replied 2 years, 6 months ago

            Charlene and Mark
            I had a longer than normal Hospital stay, due to my excessive Juiciness! The 4 chest tubes would not stop filling my Juice boxes! So the hit me with 3 days of mega steroids in IV form. Seemed to do the trick, ok so now I have been crying (I’m not a crier) just the weirdness of the drug.
            I look over at screen and see topic “…[Read more]

            • Profile picture of Charlene Marshall
              Charlene Marshall replied 2 years, 6 months ago

              Hi @danhughes

              Thank you so much for the update and letting us know how you’re doing. I’ve been thinking of you!

              Glad the IV steroids helped with the “juiciness” – Ha! I’ve never heard of that term coined before but hope the weird side effects are wearing off for you, along with the potential tremors. Have you been diagnosed with diabetes since…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes replied to the topic FDA Approves OFEV for Chronic Fibrosing ILDs. in the forum Ofev (Nintedanib) 3 years ago

    MyDr started me on Ofev before it was approved for Scleroderma.

    I am on my 8th month of Ofev, I would recommend to anyone prescribed this drug to eat a big, high protein meal prior to taking Ofev, or diarrhea is almost guaranteed.

    the only other notable side effect is weight loss, I’m not sure if it’s the drug or my lung condition causing it,…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes replied to the topic Taking Cellcept (mycophenolate) PLUS Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 4 months ago

    I forgot to add.

    I have been on Mycophenolate since 2017.  At my first appointment at INOVA ALD CLINIC they conducted a blood test for Scleroderma (SCL-70) test, proved positive.

    in the spring of 2019 same test was negative, possibly pushed down by the Mycophenolate, and diagnosis changed to IPF and Ofev was added to my medications.  So my d…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes replied to the topic Taking Cellcept (mycophenolate) PLUS Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 4 months ago

    I am 59, I have been taking Mycophenolate 3,000mg (1500 x 2 day), four months ago I was started on Ofev 150mg(2x day, at least 10hrs apart), in addition to Mycophenolate .  So far no bad side effects from either medication.

    Mycophenolate, lowers your immune system, and it helps suppress the fibrosis.  Using this you have to be careful with c…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes's profile was updated 3 years, 4 months ago

  • Profile picture of Dan Hughes

    Dan Hughes replied to the topic PFF Summit 2019 in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 5 months ago

    Charlene

    My wife ad I considered it, however the cost, Airfare, rental car, hotel put it out of our reach.

    I was looking at current info on it and all sessions will be recorded , probably videos, if you could not make it. My Ofev coordinator is going and a few people from our support group are attending and will present it during our November…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes's profile was updated 3 years, 6 months ago

  • Profile picture of Dan Hughes

    Dan Hughes changed their profile picture 3 years, 6 months ago

  • Profile picture of Dan Hughes

    Dan Hughes posted a new activity comment 3 years, 6 months ago

    Thank you. For years I have been reading it, you and Charlene seem like old friends. Never felt part of the PF family until recently, when my diagnosis changed to IPF . So many overlaps in PF, with Scleroderma. They changed my diagnosis on the basis of the SCL-70 blood test, which is very sensitive. It would be very rare to only present in the…[Read more]

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    • Profile picture of Mark Koziol
      Mark Koziol replied 3 years, 6 months ago

      Hello Dan, thank you for reading and commenting. Charlene and I met when I began to co-moderate with her. She is the one who is responsible for the success of our forum. We have never met in person however we communicate almost daily. I think we compliment each other with our different strengths. I do know both of us are willing to help our…[Read more]

  • Profile picture of Dan Hughes

    Dan Hughes became a registered member 3 years, 7 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 3 years, 7 months ago

      Hello Dan, welcome and thank you for joining your pulmonary fibrosis forum.

      • Profile picture of Dan Hughes
        Dan Hughes replied 3 years, 6 months ago

        Thank you. For years I have been reading it, you and Charlene seem like old friends. Never felt part of the PF family until recently, when my diagnosis changed to IPF . So many overlaps in PF, with Scleroderma. They changed my diagnosis on the basis of the SCL-70 blood test, which is very sensitive. It would be very rare to only present in the…[Read more]

        • Profile picture of Mark Koziol
          Mark Koziol replied 3 years, 6 months ago

          Hello Dan, thank you for reading and commenting. Charlene and I met when I began to co-moderate with her. She is the one who is responsible for the success of our forum. We have never met in person however we communicate almost daily. I think we compliment each other with our different strengths. I do know both of us are willing to help our…[Read more]

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