Post-Intensive Care Syndrome (PICS) - Let's talk

@colleenyoung you are welcome. When I struggle with this disease, I often feel alone and your response reminded me I’m not. Your support and others cheers my heart and reminds me to keep fighting for my health.
Thank you for the offer of connection to others, if possible. I have Addison’s Disease, sometimes known as adrenal insufficiency. It means that my body lacks the ability to send messages to the adrenal glands to produce cortisol and the adrenal glands also no longer produce it. Like a diabetic who must take insulin, I must take hydrocortisone (artificial cortisol) in order to live. Cortisol is responsible for regulating many body functions and the symptoms of low or nonexistent cortisol can be life threatening. In stressful times, such as infection, the body calls for more cortisol which, in me doesn’t exist. I have tablet form for everyday dosage, emergency injection form for a crisis where the body calls for more than I can take orally and have had many ICU hospitalizations for IV hydrocortisone and antibiotics for adrenal shock. There is virtually no warning of going into adrenal shock. It just happens! Since nausea is a symptom, if I can’t keep down my oral meds, I would have to be hospitalized. Symptoms daily are fatigue, low blood pressure, weakness, pain, nausea, diarrhea, etc. somewhat controlled by my medication which I adjust per a specific Mayo plan which raises and lowers dosage, depending on symptoms. There are good days and bad days as the artificial hydrocortisone can’t totally mimic how the body would secrete cortisol although the plan accounts for dosing as close as possible to how the body would secrete cortisol, called diurnal dosing.In crisis, ICU is the only choice as I go into septic and adrenal shock, my organs begin to shut down, I become delirious and drop my blood pressure, and need the medication in high doses by IV. It is life threatening at those times. My local hospital, despite having no other patients like me, has learned to treat me appropriately and rapidly. I am fortunate as good treatment doesn’t always happen. Whew! Hopefully not too much information! Sorry if it is. FYI Mayo has not mentioned genetic testing or pharmacokinetic testing. I have several other conditions which are genetic so I guess I can ask. As always, I am shy about asking but have the support of my husband, which is so helpful. I also have hypothyroidism, a genetic eye condition called corneal dystrophy (requiring surgeries to fix the corneas) and am BRCA 1 positive but have fortunately never had cancer. BRCA 1 is a gene, common among Jewish people like myself, which makes you more susceptible to breast and ovarian cancers. So far I’ve done well on watchful waiting, high intensity monitoring every three months.
I feel a bit selfish as this has been all about me. How are you? How is everyone? Thank you again for your help, both the practical info and all you have done to raise my spirits. All my best wishes, Rhoda.

@colleenyoung you are welcome. When I struggle with this disease, I often feel alone and your response reminded me I’m not. Your support and others cheers my heart and reminds me to keep fighting for my health.
Thank you for the offer of connection to others, if possible. I have Addison’s Disease, sometimes known as adrenal insufficiency. It means that my body lacks the ability to send messages to the adrenal glands to produce cortisol and the adrenal glands also no longer produce it. Like a diabetic who must take insulin, I must take hydrocortisone (artificial cortisol) in order to live. Cortisol is responsible for regulating many body functions and the symptoms of low or nonexistent cortisol can be life threatening. In stressful times, such as infection, the body calls for more cortisol which, in me doesn’t exist. I have tablet form for everyday dosage, emergency injection form for a crisis where the body calls for more than I can take orally and have had many ICU hospitalizations for IV hydrocortisone and antibiotics for adrenal shock. There is virtually no warning of going into adrenal shock. It just happens! Since nausea is a symptom, if I can’t keep down my oral meds, I would have to be hospitalized. Symptoms daily are fatigue, low blood pressure, weakness, pain, nausea, diarrhea, etc. somewhat controlled by my medication which I adjust per a specific Mayo plan which raises and lowers dosage, depending on symptoms. There are good days and bad days as the artificial hydrocortisone can’t totally mimic how the body would secrete cortisol although the plan accounts for dosing as close as possible to how the body would secrete cortisol, called diurnal dosing.In crisis, ICU is the only choice as I go into septic and adrenal shock, my organs begin to shut down, I become delirious and drop my blood pressure, and need the medication in high doses by IV. It is life threatening at those times. My local hospital, despite having no other patients like me, has learned to treat me appropriately and rapidly. I am fortunate as good treatment doesn’t always happen. Whew! Hopefully not too much information! Sorry if it is. FYI Mayo has not mentioned genetic testing or pharmacokinetic testing. I have several other conditions which are genetic so I guess I can ask. As always, I am shy about asking but have the support of my husband, which is so helpful. I also have hypothyroidism, a genetic eye condition called corneal dystrophy (requiring surgeries to fix the corneas) and am BRCA 1 positive but have fortunately never had cancer. BRCA 1 is a gene, common among Jewish people like myself, which makes you more susceptible to breast and ovarian cancers. So far I’ve done well on watchful waiting, high intensity monitoring every three months.
I feel a bit selfish as this has been all about me. How are you? How is everyone? Thank you again for your help, both the practical info and all you have done to raise my spirits. All my best wishes, Rhoda.

@rckj, wow Rhoda there's a lot in that paragraph. Imagine the medical education you've given the staff and clinicians at your local hospital. Have you added that to your résumé?

Your experience would be most welcome in the Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

Here are some specific discussions where your participation would be most valuable. You may find others too.
- Possible Adrenal Issues https://connect.mayoclinic.org/discussion/possible-adrenal-issues/
- Adrenal crisis without cause https://connect.mayoclinic.org/discussion/adrenal-crisis-without-cause/
- Addison's Disease: Tired of being tired https://connect.mayoclinic.org/discussion/tired-of-being-tired/

Fellow Connect member @kdubois shares her story about genetic testing here:
> Learning to Trust Again – My Journey with Drug Intolerance – Experts by Experience https://socialmedia.mayoclinic.org/2018/05/04/learning-to-trust-again-my-journey-with-drug-intolerance-experts-by-experience/

I'd also like to introduce you to @dawn_giacabazi. If your paths haven't crossed yet, it is time they did. Dawn, too, has adrenal experiences. I'm certain their are differences, but also common experiences to share and support.

Rhoda, I hope that you will have a safe journey to Rochester. I have just now read your message, and I want to encourage you to have all of your questions and concerns written on a list so that you and your husband will remember all of them.

Don't be shy about asking about genetic testing, or about asking any questions. My experience at Mayo has been that they welcome questions, and that they (at all levels of care) will provide answers in way that a patient can understand by breaking down the medical terms. I remember an occasion when a doctor asked for my list, and he read it himself and provided me with very complete explanation of my concerns, and how one could relate to another.

On another occasion, very soon after I arrived at Mayo from ICU in KY, one of the liver doctors asked me to describe the symptoms that I had been experiencing. I recited my list, until I came to a particular symptom that I brushed aside by saying, "O that's not important". (It had been shrugged off as not important at a different hospital) The doctor at Mayo askd me to tell him, anyway. And he wrote it down in his notes.

I understand the anxitey that you are feeling as you return to Mayo. I return annually, and there is always an excitement and anxiety for me, too. My husband and I enjoy sitting in the Ghonda lobby between appointments. We enjoy looking at the artwork that is displayed throughout the many departments, too. I hope you will be able to enjoy a few quiet moments between your appointments and procedures. I wish I could send some warmth and sunshine your way. I am sending a virtual hug.

@rckj, wow Rhoda there's a lot in that paragraph. Imagine the medical education you've given the staff and clinicians at your local hospital. Have you added that to your résumé?

Your experience would be most welcome in the Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

Here are some specific discussions where your participation would be most valuable. You may find others too.
- Possible Adrenal Issues https://connect.mayoclinic.org/discussion/possible-adrenal-issues/
- Adrenal crisis without cause https://connect.mayoclinic.org/discussion/adrenal-crisis-without-cause/
- Addison's Disease: Tired of being tired https://connect.mayoclinic.org/discussion/tired-of-being-tired/

Fellow Connect member @kdubois shares her story about genetic testing here:
> Learning to Trust Again – My Journey with Drug Intolerance – Experts by Experience https://socialmedia.mayoclinic.org/2018/05/04/learning-to-trust-again-my-journey-with-drug-intolerance-experts-by-experience/

I'd also like to introduce you to @dawn_giacabazi. If your paths haven't crossed yet, it is time they did. Dawn, too, has adrenal experiences. I'm certain their are differences, but also common experiences to share and support.

@rckj Hello please accept my apologies for the delayed response. @colleenyoung
@rosemarya thank you for the tags!
I have tried my very best to catch up on all the thoughts and concerns.
As you have already highlighted any and all Adrenal issues are complex and essential to survival. They are the mother board that controls our response to all situations. Most importantly our fight or flight response. Just like all hormones they rise and fall throughtout a 24 hour period. I have no doubt you will find great comfort in Mayo Clinic. Is this your first trip to Mayo and the endocrine department?
I am followed by Dr. Schwartz and he is amazing!
I do not have Addison but my Adrenal produces to much aldosterone.

Prayers for safe travel and presence of calmness.
Dawn

@dawn_giacabazi hi Dawn! Thank you for your response. This is my second visit to Mayo, the last being in August, 2017. I am followed by Dr. Chang but she is currently on maternity leave so I’m not exactly sure who I am seeing. I have heard good things about Dr. Schwartz. I really like your description of adrenal disease! Much more concise and clearer than mine! My last visit was to set up a clear treatment plan and was very helpful. This visit is aimed at stopping repeated infections which cause sepsis, adrenal shock and ICU treatment. I am hopeful but anxious. Thank you for your wishes for safe travel and calmness. Very much appreciated and so comforting. Hope to stay in touch. All my best wishes, Rhoda.

This is certainly a very important and complex appointment for you. Some friendly advice gather all medical records including but not limited to all hospitalizations, medication changes, doctors visits and tests. If your appointment is in the afternoon try to drop them off to the doctors pod in the morning so they can review before seeing you. Helps them decide what other tests they will want to order. I always include my list of questions so when we actually meet the nerves don’t get the best of me and I forget what I wanted to say. Also curious if you are keeping any logs of symptoms, dates and times and what you were doing during the episodes? How’s your blood pressure been running?

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now...I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!