Post-Intensive Care Syndrome (PICS) - Let's talk
Have you heard of Post-Intensive Care Syndrome? Sometimes it's called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.
On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.
Grab a cup of tea, or beverage of your choice, and let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.
@hopeful33250 Teresa, we and the local doctors have tried everything but it still happens suddenly. Right now they are keeping a pic line in, high dose antibiotics and hydrocortisone. We’ve tried everything but the pic line which is really there for easy IV access in case of emergency. If they do diagnose an immune issue when I can get out to Mayo then there are medications. I hope. It does feel like I live with fear but I can’t let it take over my life. Thank you so much for the support. Rhoda
@rckj Rhoda:
So we will wish you a quick recovery from this last episode so that you can get to Mayo and get the needed diagnosis and medication.
You are wise to work at not letting fear take over, it must be hard in this type of situation, but you sound like a strong person. I admire that!
Teresa
@hopeful33250 Thank you Teresa! Best wishes! Rhoda
@rckj Hi Rhoda! I am so happy to hear from you! I see you have been through another tough spell and still dealing with it. If I could give you a hug, I would. Please get better enough and hurry yourself to the Mayo Clinic. I have faith that they can give you back some quality of life, and less worrying about your next 'crash'. How are you doing tonight?
@windwalker Hi Terri I’m really glad to hear from you too! Hope all is well with you. Your support and others on this forum and in my life is incredibly precious to me. I was supposed to go to Mayo in about a week but both Mayo and the doctors here don’t feel I am medically stable enough plus I still have a pic line in. We had it all arranged and am now canceling everything and waiting for my body to heal. I seen to be having these episodes every 4 to 6 weeks now. That is what we are hoping to prevent. I am worrying both last night and this morning and trying not to! I guess I’m scared of the disease I have now. I don’t trust my body to support me. We live close to a hospital that knows me and the disorder and knows what to do but each episode is life threatening. Now I have to work hard to get my strength back. I will of course but each time is a fallback and having to fight my way into strength, only to have another crash. Frustrated! I didn’t mean to complain so much. I have a great support system and medical care. I just wish we could figure this one out. Thank you for your virtual hug. So appreciated! Hope for your wellness and sending back a hug. Rhoda
All I have to give you is a prayer to the Great Doctor. Your Father Jesus. I prayed a simple prayer.
@rckj Dear Rhoda, you are still here, that speaks volumes about your inner strength! Will text you more later tonight. Sending prayers and healing energy your way.
Thank you so much for the great advice. I am sitting at work and started the breathing exercises, it really did feel good! I will try the others when I get home tonight. I struggle with relaxing so I am looking forward to trying something new.
@rckj Hey Rhoda! How is it going today? I am hoping better with each day. I am curious: what is the protocall for movement when you have adrenal issues? Do they want you to stay still and conserve energy? Or do they encourage some movement?
@rckj Hi Rhoda. I know being in the hospital can get boring, so if you have the desire and strength for chit-chat; you can privately text me. I don't want you to be doing it if it will be too draining on you though. More cyber hugs coming your way !