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    • #10968
      Anonymous
      Inactive

      Hi! I’m Nancy Lee and I’m 6 years post double lung transplant due to pulmonary fibrosis (as a result of Hermansky Pudlak Syndrome). I’m really excited about this forum and look forward to sharing experiences with other pre- and post- patients.

    • #10969

      Hi Nancy,

       

      Thank you so much for joining the PF forums and for creating this topic for all post-transplant recipients. I am so grateful that you’re willing to share your experience with those who may be nervous or apprehensive about the transplant process – you’re living proof that it is possible (although, I am sure you had some hardships along the way). Congratulations on being 6 years post-transplant, that is amazing!

      For people who are considering transplant, do you have any advice for them that they can carry through the process of pre-transplant evaluation and then post-transplant advice, as well? We’d love to hear from you!

      Charlene

    • #12893
      Kathi
      Participant

      Hi nancy, my husband has recently completed his pre lung transplant tests and we are awaiting the results to see if he is a candidate. Can you shed some light on how your surgery went and how long your hospital stay was and anything else you can tell us on what to expect?

      • #12900

        Hi Kathi,

        Great to hear from you, and thanks for sharing about your husband’s transplant assessment. I’ll keep my fingers crossed for both of you that he is a candidate! Do you know how long it will take to find out?

        I cannot share personal details on this topic, so I hope Nancy sees this note and can. However, through a group I am apart of for support, I’ve known many friends who have gone through lung transplants and I’m aware of many of their details. I can share those with you (leaving out identifying information, unless I ask them first) if that would be helpful? One of my friends who is 26 (I’m 30) just received her second set of lungs on Saturday morning and she is doing remarkably well. I’m so happy for her!

        Let me know if sharing their experience would be helpful. I can’t mention details of course of pain post-op or anything like that but I do know their length of hospital stay, rehab details etc.

        Sending best wishes to you and your husband.
        Charlene.

    • #12932
      Kathi
      Participant

      Thank you Charlene, my husband needs one more  test, a lung biopsy for a nodule they found in his testing. Once that is done we will go to committee for final approval. Keeping our fingers crossed that the nodule is not cancer.

    • #12933

      Hi Kathi,

      Thanks for writing back and giving us an update on your husband, although I’m sorry they found anything to interfere with a successful conclusion of transplant testing. Have they suggested multiple different things that the nodule could be? I know that especially with PF/IPF, sometimes scar tissue (the fibrosis) can appear unusual on different types of tests. I will keep my fingers and toes crossed for you both, and say a little prayer that it is not cancer also. Do you have the lung biopsy scheduled yet? Wishing him much success with that!

      Not sure if you’ve seen Emily’s post back to you, she mentioned an organization that has peer-led support available to caregivers for pre and post transplant. If you haven’t seen it, definitely take a look 🙂

      Thinking of you both!
      Charlene.

    • #14511
      Timothy Middleton
      Participant

      Can anyone please provide some insight on life after transplant? I need a double but I want to know what life is like afterwards.

    • #14530

      Hi Tim,

      Thanks for writing, it is nice to hear from you. Sorry to hear you’re facing a double lung transplant, have you begun the assessment for one? I know there are people on the forum who have had a transplant and could answer your question, so I hope they see your post and reply. I just don’t want to share their personal stories without their permission, but I’d guess someone will reach out re: life post transplant. Have you also checked out the Lung Transplant Foundation? They have a mentor program for pre and post transplant, and that person could likely answer all your questions too. Their Executive Director’s name is Emily and she’s lovely!
      Goodluck 🙂

      Charlene.

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