I haven’t been as active on the site as I use to (or as I should be) because I am having a hard time remembering our life pre-transplant. My husband feels the same. I feel as though I woke up from a dream and can’t pin point much from it. He feels he was so sick he can’t remember feeling anything other than a constant fog. I keep coming to the conclusion that we are creating a window of amnesia for ourselves. He had a very difficult time during his surgery and he was on borrowed time before that. It makes sense that we would suffer PTSD and studies on the subject are plenty. We hit the ground running towards recovery and haven’t looked back because it was so painful but enough time has passed where the ‘fog’ is an issue we want to correct. Has anyone experienced similar?
Gloria, when it came to our UC and resulting colectomies, my brother and I were polar opposites. As he had his first, I pumped him often with questions. There were many times he had to ask his wife for the answer. His wife later told me that it seemed like he did not want to remember those days. On the other hand, I kept a diary of what I went through, and with the psc and tx as well. It helped keep me grounded.
But then I can completely understand about not wanting to remember a lot of pre tx stuff. I think that remembering the bad days helps to appreciate the good/better days, and remembering the symptoms can possibly help in the future.
We are all different and have to heal in a way that seems best for us at the time.
Thanks for your response Jeff.
I also kept a diary of sorts, but it was more so for keeping family and friends updated and logging of my husband’s symptoms/prescriptions/procedures/etc. I totally agree with you, the hard times make the good even sweeter. I don’t want to forget the past. I guess that’s why it bothers me so much that I am unable to remember the details.
I believe strongly that when we are ready, memories will come. It chills me to read this as we do forget past windows if necessary to our survival.
Please don’t grieve the loss… perhaps for now, it’s for the best. Stay open and patient and maybe in time the fog will lift.
The other side is the fear that comes with allowing the fog to lift. To believe it to be true, knowing the chance of great disappointment is there… I’m not sure how one does this.
A woman wrote to me when first diagnosed, Be Kind to Yourself.
It’s ok to forget and be foggy. I have for years now with my path that has nothing to do with PSC… PSC is just my icing. But as we truly settle and relax into Life, that’s when we trust to feel it.
Gloria,
It’s all we can do and so much easier said than done! I see life like doors and pathways. Doors open and close. Pathways change directions. Both can happen unexpectedly. Both can bring Peace or Chaos or a bit of both. My goal is to learn to roll with the unexpected and to appreciate more fully those windows of Peace.
We know in our heart of hearts what feels right even when our minds want to say otherwise. Stick with your Heart, but I probably not need to tell you this
Hi Gloria,
Advanced liver disease can cause ammonia to back up in your body causing encephalopathy, which is confusion and temporary loss of memory. During my pre-transplant liver cirrhosis, I had to take Lactulose that helped bind the ammonia and eliminate it. I quit my job as a school business manager because I could not mentally focus on my responsibilities with millions of dollars at stake. After my transplant, my memory and brain function went back to normal.
Hi Paul. My husband also suffered from encephalopathy towards the end, before transplant. I never though to think about the possibility of last effects from it. I’m happy to hear your memory and brain function went back to normal. Thank you for sharing.
Hi Gloria,
The whole PSC/transplant experience seems dream-like to me. But I am able to access vivid memories from that time period. Sharing memories with others on this site from that time period is therapy for me. We have answers to many a new PSCer’s questions and fear. Put experience, as unpleasant as it was, to good use helping others.
