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

Thanks @suzyann for your post. You have been incredibly strong in the face of a major trauma. Take time to appreciate that strength that you have. Best wishes as you try to reconnect with family, but also as you make new friends who can appreciate what you have accomplished. Teresa

Hello; I have just joined this group and want to know more about PICS. I underwent liver/kidney transplant 5+ years ago and have some issues that are unexplained and wondering about this syndrome. As I learn more, I will share my story in hopes to inspire and help others.

@chattykathy I am happy you found our conversation. Are there symptoms in particular that you have questions about? I also want to make sure you have seen our Page at https://connect.mayoclinic.org/page/pics/

Yes, I have seen some of the posts and hope it was the right page. I am really not sure as I just came upon a post about PICS. I did register and login. I received e/mail notices this morning and read them and went to the connect page and logged in. My symptoms are a sensation like my insides are quivering at times, not all the time. I have vivid dreams, not really nightmares, like a movie I am watching which is strange as I am considered blind as I only have light perception vision. I have stiffness and walk like a zombie when I first arise in the morning and sometimes throughout the day when I stand from seated position. A wave of pain, at times, when I first go to bed that starts in the lower back region, tailbone, and settles underneath my jaws on both sides then stops. This sensation does not happen often but, when it does, it makes my whole body pulsate. This is the best way I can describe the symptoms.Does this make sense and related to PICS. I had a long stay in ICU after my double transplant, 5-7 weeks, then 2 weeks at a nearby room outside hospital before traveling home. I was readmitted about a month later with an infection which was only a few days, not in ICU. It took about 2 years for my recovery and am doing well now except for above-stated symptoms. Although, I am able to live with them and very thankful to be alive.

I will check out the above-mentioned link to the page and make sure I have the right one. Thank you very much.

@chattykathy, There is still so much we are learning about PICS. We do know that everyone experiences it differently. There are commonalities such as nightmares/vivid dreams, physical weakness, and cognitive difficulties. It can be complicated to tease out if symptoms are related to medications, current health conditions, or PICS. Have you discussed your symptoms with your transplant team?

I just went for my yearly followup and mentioned some of my symptoms. Noone mentioned PICS to me. I am taking very few meds and everyone is amazed by this fact. My bloodwork was done on this past Monday and was normal except for tacrolemus which was 4.5 and they increased dosage to 3 mg twice a day. I was on 3.5 mg twice daily for a couple of years. I take metoprolol and CellCept along with prednisone. Other than that, only supplements and daily vitamins.
My journey has been a long and complicated one. I want to share it with the group, but it is a long story. I am wondering if it is to long for this forum.
My story involves the time leading to transplant, recovery in ICU with another surgery 3 weeks out from transplant, readmission after discharge to home, and another surgery 2 years out from surgery for revision of bile duct.

I have had an amazing journey with support from family, friends, and people I do not know along with all the medical staff that has cared for me over the past 5+ years. I am truly blessed to be alive and hope my story helps others. I am so glad to have found this forum.

@chattykathy, I want to welcome you to Mayo Connect. I am happy that you have joined this discussion. You have already discovered that we are here to share our experiences and thus receive and give support to each other. For me, one of the most amazing things, is how much we can learn from sharing our experiences. And that we are not the only one with these 'things' going on with us.
I am a liver/kidney recipient. Going on 8 years, and I have not experienced the same PICS symptoms as you. I take antirejection meds: tacrolimus and Cellcept.
I am always thrilled to meet another transplant recipient. I am especially happy to meet you! we share the same liver/kidney transplant. You have been on an amazing journey! And yes, your journey will help others.. I encourage you to share whenever you are ready to talk about it.

I want to invite you to visit the transplant discussion forum, too. I know that there are others who are in all levels of the transplant process, who would benefit from your experience.

Here are a couple of my favorites:
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/https://connect.mayoclinic.org/discussion/new-blog-posts/
I
Rosemary

@chattykathy No one mentioned PICS to me either, but thankfully other than some weakness after my hospital stay I really did not have any bad symptoms. When I was in the hospital once prior to transplant a hospitalist there said that generally for every day you spend in the hospital it takes four days to recover.
I think we all have had amazing, life-altering journeys but yours sounds particularly arduous. I am happy for you that it sounds like you are doing well now.
JK

I am so glad to meet all who have replied to my posts. When I last posted I mentioned meds that I am taking; they changed my dosage yesterday on tacro which I stated from 3.5 to 4 which was wrong, it went from 2.5 to 3 mg. Sometimes I just am confused. After I posted it and was thinking about it I realized I posted it wrong. Oh well, such is life, right..

Anyway, I am happy to join in on the discussions. I hope everyone is feeling up to par today. We went out this morning for errands and such and have just returned.

One thing I wanted to mention about my time in ICU; when I was transferred off ICU floor and back to transplant floor, I was terrified. I was not familiar with any of the staff at that time and just felt so scared. By the time I was comfortable that I would not be harmed, which was a fear of mine, the doctors discharged me to a nearby facility, our home away from home, with home health care, I began to settle down. My husband was my caregiver during all of it and, needlesstoday, he was stressed to the max.

We were bombarded with our meds and instructions all at one time and it was a lot to comprehend.

Did I mention that I am blind, visually impaired with light perception only, which made the burden heavier on my husband.

Anyway, we made it through, like I said earlier, and so blessed to be here today. I am going to get my timeline straight so I can share my journey. Until next time, CK.