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?

@polly08

Muriel, your reply was exactly what I needed to hear, especially just answering his questions as they come up but not going into depth he has not asked for. We just started home health and I was a bit disappointed that they don’t seem to be on the same level we were at at inpatient rehab, I am so glad you mentioned walking, too. We do have an appointment with Post ICU Recovery Clinic on the 23 and it is supposed to include physical rehab, nutrition and emotional help for myself as well as my husband. Yesterday was a down day and it’s hard not to be disenhearted but I just had to remember how blessed I am and give thanks for my gifts I am being given. You all are so special to take your time to ease our way. Than you

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@polly08 I am so glad that you have found this group and have connected with @muriel66 and @rosemarya. They have offered amazing guidance and support to you. It is important for you to know that what both you and your husband are experiencing is so very normal after critical illness and that you are not alone in recovery. I am also so happy to hear that you are meeting the Vanderbilt team in the Recovery Clinic. I have the great pleasure of working with this passionate and talented group of people on various projects and know that you will be seen, heard and very well cared for!

Hi, I am 4 years post Septic Shock survivor. No one gave me any information when I left the hospital or rehab about PICS. It was a slow recovery and I had many of the symptoms listed. I was diagnosed with Toxic Metabolic Encephalopathy while in the ICU. I had delirium. I noticed many cognitive issues during early recovery including loss of memory and overall cognitive functioning. I feel I am still not 100% as I was before my septic shock, but very grateful to have survived and be as healthy as I currently am. I wish the Hospital would have given me more information and after support. I also was just diagnosed with peripheral neuropathy after trying to tell the Doctor for the past 3 1/2 years that I was numb and cold in my toes and fingertips. I was lucky to have found a septic shock survivors support group and I asked if anyone else had those symptoms. I received numerous responses from other survivors that actually had to have amputations due to drop in blood pressure and vasopressor medications while in ICU. I immediately called my Doctor and he had me come in and finally made the proper diagnosis. I also had acute respiratory failure and required mechanical ventilation for over 2 weeks. I also developed the dreaded hospital acquired infections that made me even sicker. I survived and I am grateful and blessed. I think anyone who goes thru such critical illness understands what a precious gift life is. Thank you for being here.

@andreab

@polly08 I am so glad that you have found this group and have connected with @muriel66 and @rosemarya. They have offered amazing guidance and support to you. It is important for you to know that what both you and your husband are experiencing is so very normal after critical illness and that you are not alone in recovery. I am also so happy to hear that you are meeting the Vanderbilt team in the Recovery Clinic. I have the great pleasure of working with this passionate and talented group of people on various projects and know that you will be seen, heard and very well cared for!

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@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

Hi, I am 4 years post Septic Shock survivor. No one gave me any information when I left the hospital or rehab about PICS. It was a slow recovery and I had many of the symptoms listed. I was diagnosed with Toxic Metabolic Encephalopathy while in the ICU. I had delirium. I noticed many cognitive issues during early recovery including loss of memory and overall cognitive functioning. I feel I am still not 100% as I was before my septic shock, but very grateful to have survived and be as healthy as I currently am. I wish the Hospital would have given me more information and after support. I also was just diagnosed with peripheral neuropathy after trying to tell the Doctor for the past 3 1/2 years that I was numb and cold in my toes and fingertips. I was lucky to have found a septic shock survivors support group and I asked if anyone else had those symptoms. I received numerous responses from other survivors that actually had to have amputations due to drop in blood pressure and vasopressor medications while in ICU. I immediately called my Doctor and he had me come in and finally made the proper diagnosis. I also had acute respiratory failure and required mechanical ventilation for over 2 weeks. I also developed the dreaded hospital acquired infections that made me even sicker. I survived and I am grateful and blessed. I think anyone who goes thru such critical illness understands what a precious gift life is. Thank you for being here.

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@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.

@rckj

@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.

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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

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.

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@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!

@rckj

@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

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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?

@andreab

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!

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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

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

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@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

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?

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@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

@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.

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@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

@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.

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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.

@colleenyoung

@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.

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@colleenyoung hope it wasn’t too much information! So funny the thought of adding it to my resume but truth in it! The local hospital has told me that it has been an education for them and they have responded admirably. At my sickest, early in each episode, there are often staff with me at all times or very close by. They reassure me often that I will get through. Such a relief to my husband and myself! I worry for my husband who has often heard the words “it’s touch and go”. But we are hanging in there through this together and I am fortunate for that.Thank you for all the resources and I would love to talk to @dawn-giacabazi re: our related experiences. Should I just write to her and introduce myself? Thank you for all your support. We fly to Mayo on Monday. I will try to stay in touch through the whirlwind of appointments! Your support has lifted my spirits and is precious to me. Thank you for your kindness and helpful information. All my best wishes, Rhoda

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