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

Why not ask his Doctors what the best course of action for you is re staying home and ask your husband what he prefers? (Me, I would like to have a loving wife by my side, encouraging me and showing loving acceptance and patience and "you'll be better than ever, Dear".

@ekaminowitz, I see that this is your first post, and I would like to welcome you to Mayo Connect. We are glad to have you joined us here. I am a volunteer and I have no medical training. And I have no experience with bypass surgery or your current decision dilemma. I think that your confusion and concern of how to decide what is best for you and your husband is one that many of our members have/are experiencing. I would like to refer you to two discussion groups that might provide some helpful information.

In the Caregivers Group, you will meet @IndianaScott, who will have some ideas and will be able to introduce you to some related conversations. https://connect.mayoclinic.org/group/caregivers/

In the Heart and Blood Health Group, you can meet others with heart/bypass experiences.

Peace and Strength
Rosemary

@stressedmesseddepressed, Thank you for this suggestion. I agree that asking our Doctor is always the best start.
@ekaminowitz, Have you spoken to his doctor? Is his recovery and his current sleepiness routine for being 2 weeks post surgery?
Rosemary

@muriel66 I’m sorry it has taken me so long to get back to you but I want you to know how much I appreciate your kind and thoughtful response to me. I have been ill with the adrenal insufficiency but have managed to avoid hospitalization. A great deal of skilled medical intervention and care made that possible and I am grateful. Still working on getting better enough to go back to work part time which I hope will be soon. Also gathering strength to be able to be more present for my husband, family and friends. I too often fight with fear, mostly of a repeat episode but also of not being able to be myself. I also seek more joyful moments and was greatly touched by your happiness at meeting me. I often, quite irrationally, get down on myself for being ill and you reminded me, so gently, that this illness is not my fault. All I can do is to continue to strive for best health for myself and my family’s sake. I have so many hopes for a return to at least part of the life I lived before this illness. I do believe, with the encouragement of Mayo, that this is possible with a great deal of work and help. Talking to my husband, to Mayo, to my local medical team, to family and friends and to you has fueled hope, a precious commodity right now. There are good days and bad days. I struggle to treat this as a journey with peaks and valleys and not succumb to a sense of despair. It’s hard sometimes. I don’t know if I have found serenity yet but there is a great comfort in my husband’s love and care as well as all the others who have rallied around me. There is a team and I am luckier than many in my situation. My husband is such a critical part of this team and I hope I am also there for him. He says I am, which is reassuring. I am sad also, mostly that this is ongoing and requires daily, sometimes hourly, management. My husband and I often reminisce about happy times and travels and hope to travel again. It would require much planning with the nearest hospital to our travels but it is possible when I stabilize more. Dreams and wishes! Not a bad thing, I think. Now, as you said, it really is one moment at a time and finding joy in some of those moments. Little things activate my joy. Visits from family and friends, flowers sent by my husband, people arranging for distractions for me when I come out of the delirium (iPad movies, books, pictures of beloved ones, pictures of our four kitties, etc.). Delirium is a strange state to be in. Mine always involves pain, nausea, a semi-comatose state, confusion and bewilderment, terror. As I become clearer, pain dominates as my blood pressure is often to low to allow pain medication. I always fear dying during, before and after. But I am a fighter and get very skilled ICU care so I think I will make it through. Still afraid, of course. I took a great deal of joy and hope from your thoughts regarding being meant to be, both here in life and as a team with my husband and others. I am afraid I am rambling a bit but hope this all makes sense. I am so grateful for your response to me. It was and is heartwarming. I am so glad to have found this forum and the wonderful people who participate in it. I am grateful to have met you and hope we can continue to correspond. Focusing on that one moment at a time, as you said, is a path back to the joys of life. I’m still working on that one! All my best wishes to you and I hope we can stay in touch. Rhoda.

Our newest in this informational series on Post ICU Syndrome: https://connect.mayoclinic.org/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-prevention-part-ii/

Hi Rhoda @rckj
I was going through messages and re-reading yours, I thought I would check in to see how you are doing. Today @windwalker wrote a post in another discussion that I thought you may appreciate reading https://connect.mayoclinic.org/newsfeed-post/sharing-the-burden-of-pain-meet-sandytoes14/?pg=1#comment-105045

I look forward to hearing from you again soon.

@colleenyoung Colleen, I am so very grateful that you wrote and did appreciate reading @windwalker's post. I've had a rough time of it over the last two months. Two hospitalizations both including ICU stays and a lengthy time inpatient. I was just discharged from the last a week ago and have nursing and physical therapy home care. I'm tired. I am still fighting, always will, but this ongoing chronic/acute illness is wearing me down. Hospitalized for sepsis and adrenal shock. The adrenal insufficiency is getting harder to manage despite the excellent guidance from the Mayo Clinic. There is now a question of an autoimmune deficiency that may be stirring things up, so more evaluation and treatment are needed. I wonder if it's time to return to Mayo for re-evaluation. I miss my old life, I miss my work (clinical psychologist), I miss an easier life with more fun times. My husband is enormously supportive and just a great person but I worry about the impact on him. He's been told so many times that it is "touch and go" when I'm admitted to the ICU that I know he is worried and protective of me. I think I am also sad. I had a close call with the adrenal insufficiency just yesterday but was able to recover with increased medication. Still ill but not as bad as yesterday. Sick of being sick and worrying about the quality of my life. It takes so long to recover from each episode. I guess the short story is that I am very grateful you posted. It could not have come at a more needed and appropriate time. It raised my spirits and helped me to post back as I'm always worrying that my posts are so much about being ill and in the ICU all the time that they are depressing to others. Anyway, thank you. I hope that we can and others on this site can continue to correspond. I also hope I can be of help to others despite my ongoing problems. Best wishes to you and to all on this site. Rhoda

@rckj Good morning Rhoda. I just read your response to Colleen. I don't know much about adrenal issues. I think the adrenals are what gives you energy. I do know that not having the energy to live the life you want; stinks! I mentor another group on here (mac and bronchiectasis); lack of energy is one of biggest gripes. The fatigue that comes with our disease is daunting. I am curious about your condition. How do they treat adrenal problems? You mentioned that it might be time to visit the Mayo again. If you think it, then it is probably time to pay them a visit. One thing about Mayo is, they are always advancing. It might be good to check in and see if they have anything new going on. Your husband sounds like a real gem. I hope that your today is brighter. Hugs -Terri

Hi everyone,
@andreab just posted a remarkable opportunity tell health care professionals about your ICU experience in order to improve the experience for others. She writes:

"The Thrive Peer Support Collaborative through the Society of Critical Care Medicine has connected Mayo Clinic with a vast network of international sites and experts who are dedicated to improving life after the ICU for patients and families."

Now they want to hear first-hand experiences through a 30-minute telephone interview. Click the link for more details and how to get involved.
https://connect.mayoclinic.org/newsfeed-post/opportunity-to-help/

Thank you so much for affording patients and their families this opportunity that can help impact current and future critical care (and after-care). Also, just a friendly reminder that we host a monthly in-person PICS support group for patients and family member the 3rd Monday of each month (next group: June 18th), from 6:00 to 7:00 PM, at Mayo Clinic Rochester Campus St. Mary's Hospital, Francis Board Room. This is a great opportunity to share your experience, strength, and hope with other survivors and families, and to exchange ideas on bolstering resilience and recovery, in a compassionate, accepting, supportive environment. To attend, go in the front doors of the Francis Tower. When you get inside, take a right at the main information desk that is just past the elevators. Go towards the end of the long hall and we will have a sign out for the group, and we'll be looking for you! Call if you need help at 507-398-7470. Refreshment are served.