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    • #15527
      Kathleen Sheffer

      Lately I’ve been struggling with a lot of survivor’s guilt. I am exceeding expectations 2.5 years after my heart-lung transplant. Meanwhile, members of our community are not doing as well.

      I’m thinking of @charlotte-gilbert and her husband @brian-gilbert as they go through recovery from her heart-lung transplant. I’m so grateful to her donor and medical team for making her transplant possible, but I know it is a long and difficult journey ahead. Charlotte will have a Tracheostomy today so send her good vibes please!

      My dear friend, Anna, remains inpatient nearly 5 months after her heart-lung transplant. It has been one of the rockiest recoveries I’ve ever heard of. My recovery seemed difficult at the time, but I was discharged after 23 days. I honestly don’t know how she is still hanging in there and staying positive. She’s a warrior. I wish it weren’t so hard.

      On Wednesday Mike Bonar passed away in the hospital, just over a month after his lung transplant. I didn’t know Mike personally, but his story affects me. It could easily have been my own.

      All the losses of 2018 weigh on me and I’m trying to reconcile the blessings in my life with all the pain others are experiencing. I feel so lucky, but not in a way that makes me feel very good. Guilty may be the more appropriate term. Why am I still alive? Why me and not them? I know this isn’t a good question to ask and I’ll never find an answer, but I’m not sure what the better question is.

      Do you ever feel this way? Do you see other people enduring more hardship and feel guilty for your own relative health? How do you process that guilt?

      I put enough pressure on myself already to make sure I’m doing everything I can think of to honor my donor and the friends I’ve lost. As well as everything I can think of to express my gratitude to friends and family and strangers who make my health possible. I don’t think I can find meaning in the inequity of this disease. I don’t want to look.

      How do you deal with how utterly unfair life is? I know this is just reality, but it’s bumming me out!

    • #15531
      Brian Gilbert

      As a caregiver, I feel somewhat guilty in sharing good news with other caregivers since Charlotte may be doing better than the person they’re caring for. Each day that I get a hand squeeze or a smile, or both, I can’t help but think of the donor family still grieving the loss of their loved one. This process is much more emotional than I had anticipated. We took many pre transplant educational classes with the hospital, and although the classes familiarize you with terms, processes, etc., they really don’t prepare you for the emotions. And to be honest, there probably isn’t a class you could take to truly prepare you for how you’re going to feel.

      • #15536
        Brittany Foster

        I completely understand what both of you are saying as both a fighter with many medical conditions and can see how hard this would be from a caregiver standpoint too although I’ve never been in either of your shoes. I think it’s a positive thing in itself that you’re able to talk about these feelings and emotions. Personally, it gets even harder for me when I hear about death and loss in this community. It makes me think about things that I wouldn’t want to think about. It makes me think about the “what ifs” and “what could go wrong?” This leads to anxiety for me which often leads to self blame or feelings of doubt. I try to talk about these feelings with people who would somewhat understand and I’m grateful that I have a therapist to share the hard emotions with. Sometimes I feel guilty for even feeling depressed and down on myself because in the back of my mind I still think “i don’t deserve to have these feelings when others have it worse and others aren’t even with us”. For me, my feelings of guilt stem strongly from my deepest fears because it has always been easier to blame myself or think about what I did wrong than to address the hard topics. I’m rambling and not even sure if this is making sense. But just know you’re not alone with these feelings and I know how uncomfortable addressing this can be so I’m here for support any time

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