General
I'm not dead - now what?
July 14, 2026
in General
If you were in our support group tonight, you'll know our topic was "I'm not dead - now what?"
What does it look like to find meaning, life and joy again? When you were prepared to die, as so many of us were, what does that change of path look like and how can we move forward to embracing all that this life has to offer?
I'd love to hear your thoughts as we continue to explore this question together
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1 - 9 of 9 Replies
Transplant Patient
This is such a great topic. I’m two months post op from my second liver transplant, the first being 21 years ago. How i recalibrated after the first surgery is very different than how I’m doing it now. It feels like I want to squeeze the juice out of every minute of time I’ve got, and there’s simply not enough time in the day!
How do I get invited to this support group?
what a great topic.
Let me begin by saying how glad I am to hear that others are asking this very question. I suspect many of us lived with the realization that our liver disease could ultimately end our lives. We carried a dark cloud over our heads that influenced nearly every aspect of our lives—our outlook, relationships, emotions, and attitudes.
In my case, I built a wall around myself. I shut down many of my feelings and developed a siege mentality as a way to cope.
Now that the dark cloud has lifted, the question becomes: How do we move forward? How do we truly begin living again?
This is why I refer to this stage as finding a "new normal." I'm currently seeing a therapist to help me work through these questions and emotions because this is one part of the transplant journey I wasn't prepared for.
I'm grateful to have found this group and look forward to hearing others' experiences and continuing these important conversations.
This is a great topic. I was not able to attend, but I was never prepared to die. I was evaluating my options and wanted all of the choices to be mine, when I am ready for the next step mentally and physically. I know it is not always up to us of course, but I went through this process on my own terms and still try to, with the help of my amazing transplant team of course. Now I just live without dialysis, without worry what is next, except for just check ups, medications and learning how to be careful from time to time.
Transplant Patient
you're invited! you can find registration by clicking on the education tab at the top of the screen, and then support groups. All our upcoming dates and the link to register are listed there
Transplant Patient
oh I love this insight! I feel similarly in that despite being sick my entire life, and having to make some difficult decisions on what that treatment will look like my reckoning with mortality didn't come until almost dying during my transplant surgery. The decision to pursue transplant instead of trying other things was very much a quality of life decision, and what felt right for me at the time. Then of course the surgery didn't go as planned, I ended up with 2 transplants back to back and spent over a month in the ICU on a vent and that definitely challenged my perception of things just a little. So the "now what" question looked a little different for me.
I think we can learn so much by how we all answer this "what now" question. For some of us that's life after death, and for some of us that's thriving after illness, or a mix of all of it.
So sorry that your experience was so difficult and you prevailed, thank God. I have seen and heard of cases that went not well after or during and I feel for everyone who who had to deal with unfortunate outcomes during those. I think we all have our own experience and that is what makes all of our cases and journey unique. I pray that everyone gets well, goes through those traumatic decisions with strength and comes out healthier at the end of it all.
For me, facing my own mortality completely shifted my thoughts on career goals. I was let go from my graphic design job due to my long hospitalization when I first entered kidney failure and I remember being so angry at the employer for being so "heartless." In retrospect, it was pretty mean of them to do but it made me realize I wasn't happy at the job anyway and wanted to serve the kidney community in some capacity. I've worked in the kidney space professionally for over 12 years now since transplant and have no regrets.