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

@andreab, I cant tell you what a blessing this group has been to me. The advice and suggestions for sure, but late at night when the fear comes back, that there will be another set back to send us back into another nightmare, I reread the posts and here is proof things do get better. We are doing well and finding our way, i feel hopeful

@laura1964, I want to extend a welcome to Mayo Connect. I am happy that you have joined the conversation and have shared your experience. It is frightening when we feel alone with our symptoms, and it is a blessing when we find someone like us. That is why Connect exists - to connect and to share and support others like us.
I commend you for your own self determination to advocate for yourself, thus finding an accurate diagnosis and treatment for the peripheral neuropathy. EVen though my experience is different from yours (liver/kidney transplant), I gather strngth from your experssions of gratitude and blessings.

Laura, I persomally want to invite you to read and/or enter into any of the discussions on Connect. Here is the discussion group for Neuropathy https://connect.mayoclinic.org/group/neuropathy/

@andreab It’s been awhile since I’ve been on line. I’m not sure I am doing it right but I hope this goes out to all, those I’ve talked to and those I haven’t. I’ve had the usual illnesses for me, pneumonia, sepsis, delirium and adrenal shock (Addison’s Disease), with multiple ICU admissions. After many contacts with the Mayo Minnesota team, I am coming to Mayo from the east coast in 10 days, to be re-evaluated and hopefully find some solutions. My husband is coming with me. This is my second visit, last visit was August, 2017 although there has been ongoing consultation through the portal and my local doctors. As always, I am anxious and scared for no particularly good reason. My last visit was positive and enormously helpful. I guess I am reaching out for support as it’s been a rough ride. The goal of the consult is to find a way to stop these repeated episodes so I can have more of a normal life. I send my good wishes to all and hope to be in touch. Thank you, Rhoda.

Rhoda, I can understand that, despite previous positive and helpful visit, that you're still anxious and scared about your upcoming visit and re-evaluation at Mayo, Rochester. It's a big journey from the east coast and you're searching for answers. That always bring apprehension as well as hope. Do you know about the Concierge Services at Mayo? It is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours.
Ways to Contact Mayo Concierge Services
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

@rckj do keep us posted.

@laura1964, I add my welcome. Thank goodness for your getting a proper diagnosis. Your sharing your story here will certainly help others too.

@colleenyoung thank you Colleen, Laura and Rosemary! It is so reassuring to be in touch again. Colleen, I am so grateful for the info on the concierge service. I didn’t recall that resource and we need that help right now. I realized while reading your response that I am scared that there may not be solutions. A result of some very difficult consults in my home area which led to hopelessness. I need to remember that that has not and likely will not be my experience with Mayo. Last time I was there vastly improved my medical situation and the Mayo team are now already talking about possible answers. Having a rare disease is a strange experience. I have yet to meet, through any forum, anyone struggling with a similar situation, although I haven’t really searched. Diagnosis itself took years and much struggle to survive. Also, it was so hard for my husband and I to continue to work towards answers for an undiagnosed illness with medical doubt and dismissal. I am not glad to have this but it was a relief to finally find out what it is and receive appropriate and life saving treatment. Thank you for the acknowledgment of both my fear and my hope. We face ahead long plane rides and tiring travel as well as the whirlwind of multiple appointments over, as yet, an unknown number of days. But again, I remind myself of the relief of the support of the entire Mayo organization and the hope for renewed strength and health. This conversation has brought back the memory of the last visit and the hope for this one. I thank you. I will stay in touch and appreciate the responses from the members of this forum. I come out this time with an indwelling PICC line and carrying all the medical supplies to care for it as well as emergency kits, with needles, for an adrenal crisis. I am spending the next days making sure I have the appropriate documentation to get through security. Whew! But I feel emotionally stronger as a result of this conversation and a distinct hope of reducing or ending my frequent ICU visits. Again, I thank you and look forward to being in touch. Rhoda

One of the many blessings of being a part of this online group is that, as a critical care practitioner, I learn from each and every one of you with every message I read. It has directly impacted the way I care for people at their bedside - and I am so grateful to each of you for that. @laura1964 , you mention that you had wished that that hospital had given you more information "and after support" following critical illness. Are there specific suggestions that you may have thought of for the after support? Many organizations are exploring starting Post ICU clinics, services, etc., but knowing the exact needs and expectations that the returning patients and families might have has been an ongoing challenge. Your insight is very valuable!

I'm so grateful that you took the time to tell me that, @rckj. Thank you. Rhoda, I know that your condition is adrenal related, but I don't think I know your actual diagnosis. Would you mind sharing it? I may be able to help connect you with others here on Connect.

Also, will pharmacogenetic testing be part of your visit to Mayo?

Annie, one of the problems I’m having with my husband is nutrition. He has CKD stage 3 so e have to watch his protein, potassium, phosphorus and sodium intake, he lost 23 lbs and a lot of that was lean muscle as I’ve read happens to a lot of folks. The problem is not to just gain weight to get stronger but LBM is so important not to just gain back fat. I have read plant protein is better for folks with CKD but I’m not sure if that’s true and several articles I’ve read suggest 3,000 to 5,000 calories a day to regain strength and endurance, with great percentage being protein and healthy fats. Most of the discharged ICU patients are sent to inpatient rehabs and later home based rehab programs but we don’t get guidance about nutrition and most primary care doctors are not familar with the dietary needs of PICUS folks. I’m sure there are others with specific dietary needs, diabetics and others I feel is a need for after support

@polly08 you and your husband are not alone in trying to manage diet with chronic kidney disease. There are several members sharing about exactly that in the Kidney & Bladder group on Connect here: https://connect.mayoclinic.org/group/kidney-conditions/tab/discussions/

Here are some specific discussions that might be helpful:
- Oxalates in food https://connect.mayoclinic.org/discussion/oxalates-in-food/
- 3rd stage kidney disease and diet https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/
- Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD) https://connect.mayoclinic.org/discussion/confused-about-stage-3-ckd-diet/

I encourage you to read and join in one of these discussions

@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.