January 27, 2021 at 8:33 pm #27027Charlene MarshallKeymaster
After receiving a lot of feedback on a recent column I published on PF News, I wanted to share it here with our forums community. Much of the feedback I received came from other patients commenting or reflecting on whether they too have experienced post-traumatic stress disorder (PTSD) following an acute exacerbation, lung transplantation or intensive care stay … but just didn’t know it.
I believe PTSD is a lot more common than we think among those living with a chronic illness, especially with a disease where a basic ability for survival (ie. breathing) is jeopardized. I was diagnosed with PTSD after a prolonged and complicated hospital admission, and recently wrote a column titled PTSD is Common in Chronically Ill Patients. Here’s How I Address It.
I chose to write this column, which I felt really vulnerable writing about, for two reasons:
a) I wanted to help illuminate that patients who are chronically ill might be living with PTSD and offer tips on how to manage it.
b) Debunk some of the myths about PTSD. Namely, that it is only caused by an external event like an assault, war, major accident etc. PTSD is a response to how your body perceives a threat, internal or external. For me, that was intubation and being restrained in the ICU.
If you’re experiencing symptoms of PTSD (or have in the past) know that you aren’t alone. If you aren’t sure whether this is something you might have, speak with your doctor or learn more about it on credible websites.
What are your thoughts on whether or not chronically ill patients experience PTSD more than we think?
What do you do to work through trauma or stress-related issues related to your IPF/PF diagnosis?
January 30, 2021 at 9:18 am #27089KathleenParticipant
On Dec.10, I felt well. YES I had some shortness of breath but otherwise felt fine. Dec. 11th I had a lung biopsy and woke in the hospital the night of with severe panic attack. It has been 7 weeks and I still have terrible sudden onset panic/anxiety and overall feeling of not being well. The surgery was the worst thing I’ve ever been through. I don’t know if I’ll ever feel/be the same. I had blood in my nose, bruises on my face, chest, underarm. I’m beginning to wonder if I might have PTSD. I regret having the surgery although I was told it was the only way to diagnose my illness.
January 31, 2021 at 8:59 am #27097Mark KoziolParticipant
Hi Kathleen, what a horrible experience you encountered. Did you ask the surgeon or his assistant why you had bruises on your face. I can understand the markings on your chest and underarm but why the face. I’m sorry you had to endure this experience and that you are still having problems. I had a lung biopsy as well and thankfully I came through it without any problems. I hope you have a nice relaxing Sunday, Mark
January 31, 2021 at 9:08 pm #27102Charlene MarshallKeymaster
I’m so sorry to hear of this experienced you endured! I know many others who have struggled with their lung biopsy surgery as well. If you’re still waking up with panic/anxiety attacks, or recalling vivid memories of the surgery/hospitalization, it could be due to PTSD. Your body could have perceived a threat while you were under anesthetic or during your recovery and sometimes the mind can be really complex in processing that trauma. Is there a social worker involved in your care, or an allied healthcare professional you could speak to? Far too often, people dismiss the risk of PTSD until the patient is really struggling as in my case. It was my transplant RN who really listened to my concerns. Do you have anyone you could speak to about this? Once I “put it on the table” for discussion, a few options were made available to me that has helped me deal with it.
Let me know if this helps, and please feel free to reach out anytime.
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