Kidney
Do all dialysis patients experience sone form of PTSD from the experience? Have you dealt with this?
I recently listened to a podcast documentary called “The Great Social Experiment“…. I spoke with the man who researched and produced it … he shared with me that he initially doubted that all patients experienced PTSD from the dialysis experience but that after speaking with many patients … he came to the conclusion that all patients experience some form of PTSD… I hope this question for discussion is not a trigger… Please guide me with any feedback. I hope people are willing to share something about how they felt and how they feel now. I hope when I share my personal feelings it is appropriate on this platform … for me, the pandemic, right after my transplant was more traumatic than my entire Dialysis experience in many ways… I was wondering if people could take the time to respond in some way …
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Transplant Patient
Not dialysis, but I did develop medical PTSD. It’s actually way more common than people realize, for both patients and care partners, and I never knew until I started therapy for it. I’m still working with my therapist to find what works for me in terms of management, and also work with a somatic therapist doing hands on body work to help as well.
Ditto to Ali- However, I did dialysis and i absolutely have medical PTSD from that as well. The foundation of a lot of it stems from not feeling safe in the hands of other people, not being conscious while things are being done to me, witnessing myself go out of consciousness, and then of course personal trauma and complications that have occurred. I do talk therapy, somatic processing, visualization, breathwork, journaling, EMDR, and many other forms of therapy that help me to move through the grief and trauma held especially in my body. I also have learned how to advocate for myself in order to get the care I need and help me to navigate times where I am noticing myself become triggered or panicked.
Probably a year post-transplant, we were talking and catching up with a dear friend who is a psychologist. At the end of the discussion, she leaned forward and said, "I'm seeing some distinct signs of PTSD in you both, which I would expect after what you've been through. Don't freak out because of it. Just be aware and continue your path of self-care and loving each other."
Eight years later we more have memories of the traumatic moments but not many daily effects on our life. It was so helpful to understand that for us.
I had panic attacks at every dialysis treatment for the first 4 months! Even now if I start to get cold I fear my BP is about to drop and I’ll faint- I’m 17 months post transplant at this time and I still fear low bp all the time. To say I have ptsd would be pretty valid!
i think for so many it is a total loss of trust in your own body and the feeling of being at the mercy of care providers that are often never the same and seem to be rushing through their own daily duties and not seeing us as human. It is as very unnerving for myself.
Transplant Patient
@Jay I clearly have PTSD after my dialysis - the neck catheter and the issues showering but having to take a bath has ruined my joy for baths… and believe or not, but I put in a new bathtub right before I got the neck catheter, so literally the very first bath I took in it was after my first outpatient session,,which was highly traumatic, and I was both dizzy and had headache and was so tired… it has been hard to get back in… I have tried to change the scent in the bathroom and the lighting and the music / slowly it is getting better!
Yes, I think I have it. I have never been diagnosed but I'm pretty sure with my past and present experiences, I'm almost sure I do. I think smells for me are a big trigger and seeing someone experience certain procedures is a trigger. When seeing someone going through a procedure, I freeze up. I feel scared and cramped up, it almost feels like I'm standing on the edge of the empire state building and my knees want to give out, but my mind is the only thing holding me up.
Walking into hospitals I immediately smell my past. I think of all the catheters, all the medication, all the late nights in the ER visits and hospital stays.
At NMCSD the 5 floor (5 north) to get to the nursing unit there is a very long hallway. On your left side is just a blank wall, on your right, it is a window that stretches from one end of the hallway to the other looking out over the hospital’s grounds. On this window there is a very noticeable endless RED hand railing. To this day when I’m there I see the hand railing and I’m immediately transported back to when I stay at the hospital multiple times for always being sick as a young child. I can always avoid the hand railing but the smells unfortunately never go away.
Yes, definitely. I won't watch certain TV shows or listen to things I did while on dialysis. Some kind of associative thing. I find myself going back to time on dialysis and/or in the hospital quite a bit while talking to other people. I'm trying to be mindful of it on my own, but its easy to fall into.
Transplant Patient
@Nickhansen795 totally agree - I have the same feeling and it is so hard since I am trying to advocate to improve the conditions for kidney pts and I see reminders all the time!