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    • #35664
      Colleen Steele
      Keymaster

      My son Cullen celebrated 8 years post-transplant on August 7th.

      Are there any questions, concerns or curiosities about transplant (they can be personal or clinical) that I can answer from either a caregiver or patient perspective?

      If you are curious about how Cullen is doing, click on the following link to a column in which I shared what 8 years post-transplant is looking like for him.
      A Progress Report on My Son’s 8-year Transplant Anniversary

       

    • #35674
      Jen Cueva
      Keymaster

      Hi @colleensteele, I love that this year Cullen was taking his midterm in college instead of the other medical appointments and procedures.

      I know that although he no longer has PH, he continues to need to take a ton of medications and manage multiple health conditions post-transplant. I’m incredibly grateful that Cullen is doing so well, knocking on wood, and praying that this continues for many more years.

      I’m looking forward to hearing about Cullen’s celebratory milestones as he continues to work hard in college and smash his goals!!

      I love you and your family so much. Thank you for sharing so much of your story and experiences with us all. Many who may need a transplant in the future can read this and find hope.

    • #35683
      Colleen Steele
      Keymaster

      Thank you, @jenc. I remember what stories like ours inspired us so I we are now doing the same…Knock Wood!

    • #35689
      Jen Cueva
      Keymaster

      I love that @colleensteele! I, too, find other stories like yours sharing Cullen’s journey inspiring. We all continue to find inspiration despite how long ago our journey began.

      The most common problem I hear in the greater rare disease community is how to pay for transplants. What advice would you give to those people?

      Also, Manny’s cousin’s husband recently died of complications of cystic fibrosis(CF). I shared our CF website with them several times via text. But they were not interested. When I asked several weeks before his passing if he was eligible for a transplant, his cousin told me that he didn’t want one and felt it was “not worth it.” I struggled with this because he was 2 years younger than me. But I also respect that he has his own opinion. What would you say to someone who asked, is it worth it?

      • #35704
        Colleen Steele
        Keymaster

        @jenc I unfortunately don’t know how to answer the payment question for adults. I’m starting to stress about that myself should Cullen ever need another transplant.

        For children I highly recommend the Children’s Organ Transplant Association (COTA). That is how we covered the costs of Cullen’s care that insurance didn’t cover.

        I wrote about COTA, the process and what they will help with, in the following column:

        My Son’s Transplant Fundraiser Helped to Build a Community

        Was it worth it?

        I was asked this once by a mom who made the difficult decision not to pursue transplant for her little girl. Her daughter passed away and after Cullen received his transplant and was going through some challenges post, she asked me if it was worth it. She said she really wanted to know.

        The decision and result is very personal for everyone. Just like PH, no one story is the same. I simply and gently answered, “Yes, for Cullen, transplant has been worth it”.

        I covered this topic in a column too.

        Promoting Organ Donation by Sharing My Son’s Good Fortune

        Those were excellent questions, Jen. Thank you.

        I’m very sorry about your relative who opted out of the transplant journey. We had a long time to think and prepare ourselves mentally and emotionally for when the time arrived. It must be much harder to wrap ones brain around the enormity of it if given less time to make that big decision. And if you are very sick and tired…well, for some it might feel like it doesn’t offer a lot of hope. In my opinion, it does but hope needs something to work with so you have to be ready to put in the energy.

        • #35713
          Jen Cueva
          Keymaster

          Hi @colleensteele, thanks for sharing your thoughts and those columns that relate to the questions I asked. I know about COTA and some, not many assistance funds to help adults cover transplants. Plus, I know many families rely on the help of loved ones and strangers through benefits, etc.

          As you know, my BIL is on the liver transplant list. Thankfully he is doing reasonably well. But that also means he is moved down the list, for the most part. It’s challenging to help others when something hits them like this when they don’t know anything medical. He has an excellent care team in Houston that works hard to educate him and my sister on things to prepare for. But everyone, as you mention, is different and takes their approach to something like this. They have no clue what life post-transplant will be, but I hope and pray his team will get him there when the time comes.

          I would think there is never enough preparation for something as complex as a transplant.

          You make some excellent points about if it’s worth it. I agree that it depends on each case and what’s the pros vs. the cons. While I can respect those who wish not to follow the transplant, I also struggle sometimes. But if it’s not my journey, I can only pray that God leads them.

          I don’t recall reading about the fortune in Cullen’s fortune cookie that day. But I probably did and forgot; that is incredible, and I so like you to cherish and hold on to that one.

          Thank you, sweet friend, for sharing your experiences and thoughts on such a difficult journey.

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