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 - 15 of 15 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.
I shared my story in a separate post so I won’t repeat it here
honestly I was ready to face death because I didn’t have a choice, I put myself in that position
being in a recovery program has helped alot, I am appreciative of my Donor, I just genuinely needed help with my life and I got it
what now? My 1 Year Anniversary is coming up and I’m gonna keep going as far as I can in what time I have left in this world
I never really believed I’d die over 24 yrs ago when I got my kidney and pancreas. I’ve outlived the normal lifespan of this type transplant but my kidney’s almost done. Need a living doner. I do think about this existentially though now since I’m so much older than I was when first transplanted. They won’t even do this type of transplant on anyone over 50, which I am well over that thanks to my transplant. I can get a kidney tho from a living donor. I refuse to do dialysis ever again. I’m a new grandma and so want to stick around a while. The wait list is 3-5 years which is a no go for me. If I don’t get a living donor then I accept that too. I wish you all well.
From a FB post:
There is a way of thinking about transplant that almost everyone brings at first, without realizing they are bringing it. It is the idea that a transplant is like replacing a part in a car. The old part failed, a new part went in, and now the machine should run the way it ran before. Many recipients carry this quiet expectation into their new life, and then feel confused, sometimes for years, when the expectation does not match what they are living.
A liver transplant is not like replacing a part in a car. It is something far larger, and the liver itself makes this especially clear.
The liver is not an optional organ. There is no machine a person can live on for years while waiting, the way there is for the kidneys. When the liver fails completely and no new one arrives, the body cannot continue. This is the stark truth that sits underneath every liver transplant. The recipient did not receive a repair. The recipient was carried back from the edge of leaving. A new liver is the difference between a life that ended and a life that continues. That is not a car part. That is a rebirth.
And a rebirth changes everything, not only the organ.
The liver is the largest internal organ in the body, and it is one of the most active. It shapes how sugar is used, how fat is processed, how hormones move, how medications are broken down, how proteins are built, how toxins are cleared. When it is replaced, the body does not simply continue as before with one new piece. The entire internal system reorganizes itself around the new liver. The metabolism changes. The chemistry changes. The way energy is made and used changes. The body is redesigned, quietly, from the inside, to work with the new organ that now sits at the center of so much of its functioning.
The brain changes too. The medications that protect the new liver, the ones that must be taken for the rest of life to keep the body from rejecting the gift, do not only touch the immune system. They reach into the brain. They affect memory, attention, emotion, perception, the texture of thought itself. The immune system, now deliberately suppressed to protect the gift, is in constant conversation with the brain, so when one is changed, the other shifts as well. The recipient often notices, without knowing why, that they think differently, feel differently, remember differently, respond to the world differently. This is not damage. It is part of the same redesign that reshaped the body. The brain has been reshaped along with everything else.
So the recipient is not the same person, biologically, that they were before, even when they feel the same on the surface. The body is different. The brain is different. The chemistry is different. The immune state is different. Everything has been quietly rearranged to allow the new life to continue. This is why so many liver recipients feel changed in ways they cannot explain, and why the people around them, expecting the car-part version of transplant, do not understand what the recipient is going through.
Here is where awareness becomes everything.
The recipient who understands that a liver transplant is a rebirth, and not a repair, begins to hold their whole experience differently. They stop expecting to return to who they were before, because they understand that the person before was living a different format of life. They stop interpreting the changes as failures, because they understand the changes are the natural shape of a body that has been redesigned. They begin, instead, to pay attention. To notice how the new body works. To learn what it needs, what it can handle, what it responds to. To read themselves the way a person reads something new that they are meeting for the first time.
And something quiet happens when awareness rises. Gratitude and awareness feed each other. The recipient who receives the gift with genuine appreciation, who lets the weight of what was given actually land, finds that their awareness of the new life grows sharper. And the sharper the awareness, the more the gratitude deepens, because the recipient begins to see, in fine detail, just how much was rearranged so that they could continue. The two rise together. Appreciation raises awareness. Awareness deepens appreciation. And from that rising, the recipient begins to understand the new body, the new self, the new life, far better than they could when they were still expecting the old one to return.
This is the work that no one else can do for the recipient. The medical team gave the gift and protects it. But the mapping of the new life, the learning of the new self, the reading of the redesigned body, is the recipient's own work. It happens slowly, in attention, in stillness, in the quiet hours when a person can sit with themselves and notice what has changed. The recipient is the only one awake inside the experience. The recipient is the only one who can learn to carry the new expansion of life.
Everything in a liver recipient's life will carry changes and differences from the life before. The body. The brain. The energy. The emotions. The tastes. The sensitivities. The way ordinary days feel. This is not a sign that something is wrong. It is the sign of a rebirth that is still unfolding, still settling, still asking to be understood.
If you are newly transplanted and confused about why you do not feel like yourself, this is why. You are not failing to recover. You are meeting a new version of yourself, in a body that has been redesigned around the gift you received. If you have been struggling for months or years with changes no one ever explained to you, this is why. The changes are real. They were always real. They are the natural shape of the new life you were given.
A liver transplant is a rebirth. Understanding it as a rebirth, rather than a repair, is the beginning of learning how to live the new life well. And the recipient who develops awareness of how they have been changed becomes the one who knows how to carry the new expansion of life they have been given, forward, into whatever it is now for.
__Adel
The 'new normal'.
Good morning, I was not at this support group meeting, but the topic is very near and dear to me, I am 5 months post kidney transplant (my 2nd) and I too feel like i have to squeeze every ounce of life I have to be with my family and friends, For the last 5 years, while on dialysis sitting in the chair i was beginning to get truly tired and not sure what was going to happen to me. Now with this new lease on life I work extra hard to keep my body healthy by exercising slowly and trying to eat better, right now its all about hydration. thanks for putting in to words exactly how i am feeling -Alex
Transplant Patient
I love this! I remember being shocked when I learned how much the liver actually does, and how one tiny thing "going wrong" can wreak havoc on the entire system. Everything is so interconnected.