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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: May 22 3:02pm | Replies (598)Comment receiving replies
It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.
It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more 'normal' fashion. (Please pray for me.)
Tonight my brain is weary. I need to rest... and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.
Replies to "It has been ten days since my last statement about the way I am. I become..."
Terri, you have something, I truly would not want. You are so strong to be able to deal with this. But, then what choice do any of us have. I will keep you in my prayers and thoughts. I have never heard of your disease. I am so thankful you have your husband at your side. That is one thing, I miss. My husband, whom I loved so very much has been gone for 10 years. It can get lonely when you are dealing with medical issues alone. God Bless Terri
@rckj, Rhoda, why and how does the cortisol test make you sick?
@hopeful33250. Sorry so long to get back to you but was hospitalized with another episode. I’m not sure about your tests and adrenal problems but I recognize them as measuring hormones in the body that help with basic functioning. Sorry I can’t be more helpful. Definitely ask your endocrinologist. Also FYI, Mayo trip postponed until September for me. I’m medically too unstable to travel safely. So nice to hear from you. Hope all is as well as can be expected. Rhoda
@windwalker sorry so long to get back to you. I was hospitalized with another adrenal crisis, pneumonia, septic shock. Mayo trip is postponed until September as I am too medically unstable to travel. The cortisol test is hard because I have to hold regular medication and then be given meds which tell if the adrenal gland came be pushed into working. It disregulates all my careful medication with hydrocortisone and I usually feel very sick. It’s scary and I worry if it sometimes pushes me over into an adrenal crisis. It gives valuable information but it disregulates me for days with adrenal symptoms. Weakness, fatigue, nausea, body pain, light headed, low blood pressure, etc. I’m not sure if I need these tests as much as the diagnosis is becoming clearer but it does help decide what and how much medication I need, I guess. Still scary. So nice to hear from you. Hope you are as well as can be expected and hope we can stay in touch. Rhoda
@rckj
Hi Rhoda!!
I am quite intrigued by your diagnosis and symptoms you speak of. The adrenaline system it’s quite complicated and often misdiagnosed because of the lack of knowledge of how to treat the issues. I have found over the past 2 years that many doctors focus on treating the symptoms
(because of the urgency and complexity) they lose focus on the root cause. As you have listed many of your complications above the list is still a mile long. I have been through hundreds of tests and mis diagnosis and just as many failed treatments. But at the end of the day I take a little comfort in know that someday others will have the right treatment quickly as a result of my many failed ones. I will certainly keep you wrapped in prayers as you continue to search for a healthier you.
Blessings
Dawn
@dawn_giacabazi Thank you for all your support. It is incredibly precious to me. I feel like I am in a holding pattern between acute episodes. Everyone, medical staff included feel like they are holding their breath and waiting or trying to help me avoid the next episode. Hope to come back to MAYO soon for re-evaluation and treatment plan. Too unstable medically for the travel from the east coast. I too hope for a healthier me. Thank you again and I wish you all the best. Hope to stay in touch. Rhoda
@rckj
After years of complications and continuous episodes of hypertension crisis, severe fatigue, muscle cramps, muscle waisting (a few trials) & numerous ER visit and hospitalizations and lots of trips to Mayo Clinic, finally ended up with emergency surgery to remove my left Adrenal gland. I am in one of many recovery stages. My right Adrenal gland still has a tumor growing in it. At some point will need removed. The horrific flank pain is gone on the left side but lingers on the right with short bursts of flare up.
I to pray for a time of rest as I’m weary.
Stay strong and know we are here for you!
@dawn_giacabazi I’m so sorry for your struggle and very appreciative of your kindness to me amidst your own battle. I will keep you in my thoughts and wish only the best for you. 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?
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@rckj
Hello Rhoda,
Thank you for all the information about your situation. It was very enlightening for me. The "vagueness of symptoms" that you refer to must have made it hard to keep reaching for an answer. If I may ask a question (that is personal to me) my endocrinologist recently ordered blood tests, Metanephrine, Plasma and Normetanephrine, Plasma. The first one was completely within the normal range, but the second was a tad (.1) over the normal range. In trying to find out information about these tests, but I'm at a bit of a loss. From your experience are these tests ever used to diagnose adrenal problems?
Teresa