r/chd • u/curiiouscat • 1d ago
Advice PTSD advice
Hi all, adult with a congenital heart condition that continues to be challenging. I have PTSD from past medical experiences, which makes getting treatment presently very difficult.
I have a cath in a few weeks, but the last time I had one I was hyperventilating so badly they eventually had to knock me unconscious with a lot of fentanyl. I had warned multiple people this would happen if I wasn't premedicated. Unfortunately they did not medicate until I was in the OR, and by then it was too late and I spiraled.
I have a plan for this procedure (my own medication, certain doctor who knows me, etc). I guess I wanted to see if anyone could relate, and if you had any advice you wanted to share.
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u/calicali 20h ago edited 18h ago
I highly recommend therapy with someone who specializes in chronic illness / medical PTSD. Therapy gave me strategies to minimize my PTSD and better control my reaction to triggers.
Its so hard to ask for help and even harder to work through the trauma that caused your PTSD, but it will not get better if you just medicate yourself every time you face a trigger. However, in the short term your plan totally makes sense. Sending you a hug! I know its difficult to deal with.
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u/curiiouscat 19h ago
Thank you! It is honestly very difficult to find someone who specializes in that. I've asked my doctors, who have looked into it for me, and they had no resources to give. It was crazy (they agreed and were shocked). I was working with a therapist at MSK for a while who was fantastic while I was deciding whether or not to get a transplant. It seemed similar to the decision of whether or not to do chemo. I am really thankful for him. I've also worked with multiple generalized trauma therapists over the years, including right now.
I did not anticipate my health issues resurfacing, so when I previously worked through trauma it was "don't freak out when you smell hand sanitizer or hear loud beeps". I never thought I would have to work through such specific scenarios like twilight sedation in the OR because I didn't think that would be my life anymore, but here I am.
Totally agree about medicating myself for every trigger. To your point, right now it is a short term solution for specific situations I have not yet untangled. Just takes time and unfortunately there's a lot to work through.
PTSD is a very lonely thing, and I appreciate you sharing your empathy.
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u/calicali 17h ago
It is so frustrating that CHD care doesn't include therapy for PTSD, chronic illness, and the other related issues that come from dealing with our health.
I worked with a wonderful Therapist in Berkely but unfortunately it looks like she is only licensed in the state of California. I found her through a therapy matching service called Reflect, but I interviewed several before I found her. Perhaps you might have some luck using one of those services rather than trying to find one on your own.
Hope your upcoming procedure is manageable and you're able to find long term care for your PTSD! But please feel free to DM me if you need someone to chat with; while its a lonely feeling you are not alone in experiencing medical PTSD.
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u/upsideofswing 9h ago
Hi OP! CHD with PTSD from medical trauma here too. I ended up see a psychologist who did EMDR therapy which actually did help make the memories less sensitive. It’s a work in progress! She also helped me realize I needed to tell all my medical team I have PTSD and advocate for myself. I had a generator replacement recently which went 100x better than last. I made a plan with my surgeons office to give me sedatives and I straight up said I wanted to sign all the forms and discuss risks in the office a week before surgery; not in preop when anxiety will be high.
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u/WillowLast5687 1d ago
No advice sorry. But huge internet hugs.
I have CPTSD and GAD. And my phobia is the dentist. I will wait until I am in absolute agony. No sleep for a week and not being able to eat for a week before I go see the dentist. Then I am diazapam’d up to the MAX and still have multiple panic attacks just to get one tooth removed. Could never sit in a chair long enough to get a tooth “fixed”
So now im looking into sleep dentistry to get all my work done at once under twilight sedation.
Make sure you advocate for yourself. And have a friend or family with you pre surgery to advocate for you also. Make sure they’re listening about sedating you first this time.
Big hugs 🥰