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?
Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.
My husband was working on a farm at the time I was ill. He lost work because of my many hospitalizations. We tried to find someone else to be my caregiver, but it did not work out. I told him one day he would have to be the caregiver. He did not know a lot about caregiving but learned quickly. Now he thinks he is a nurse with a degree and all. LOL.
We have been back to the ICU floor and transplant floor to say thanks to the staff including doctors. I always ask about them in my appointments with the other staff. I am amazed by the compassion and care bestowed by the Mayo employees. I just do not think I could have received better care. Many a day, while awaiting transplant, the doctors would come in to my room and hold my hand and talk to me.
The name of the hospitality house in Florida is Gabriel House Of Care. It is such a wonderful place to stay; it is our home away from home. Everyone there, employees, patients, and caregivers are always so supportive.
Until next time, CK.
One thing I forgot to mention about my husband and caregiving; he lost his job due to being away with me so long. When we returned home, there was no job for him. In October 2011, he suffered a heart attack and his health has gone down ever since. We are a pair. He no longer works due to his health. This is one of the hardest issues we endured was his loss of work. Thanks to benefits and money raised we were able to get through it.
Thank you for your insight into what could have made the transition out of the ICU easier. Although it can be easy to, one should not underestimate the importance preparing people for such transitions of care.
@contentandwell, you mention having planned on keeping a journal. Was this something suggested to you by a care provider or was that something you had just planned on on your own?
@contentandwell, I think that each transplant center is different, just like each patient is different. I have talked with some transplant recipients at home, and I have been surprised at how patient follow-up care is provided and scheduled - or nor scheduled. But I guess all is good because we are here and we are able to talk about it together.
Rosemary
@andreab, I kept a journal of sorts. It started as a record of my many tests and procedures and eventually evolved into a journal. I saw one in a sitting rooms at the Gift of Life House and that is where I got the idea. It has many gaps, but I went back after my transplant when I was stronger, and added some of the missing parts. I am glad I did it.
My husband kept all of the emails that he sent back home to a growing list of family and friends. He also kept all of the replies. He has printed them and we have put them into 2 binders! They cover a time span of 8 months. They tell our story, and they show our support and prayers that kept us going.
These are two things that we will cherish forever.
I used to encourage people to begin a journal when listed for a transplant. I will begin to do that again. Thanks for this reminder!
Rosemary
@rosemarya, this is true, they are all different. I am amazed that my center seems to be one of the few that strongly suggests, almost insists, that you wear a mask on an airplane. I will of course but I wish I didn't have to. If it is true that viruses can get through the masks then what's the point? I did already purchase some and they are supposed to have an embedded anti-viral so hopefully that will help.
JK
@andreab No one suggested a journal, I just wanted to so I could have a record of everything. I kick myself that I didn't have it with me so most of my coherent memory was lost in my drugged up state.
JK
@alyric, thank you so much for taking time and telling us about your journey with critical illness and your experiences since. Your perspective on this side of all of it is very powerful. The desire to reconnect with your care team is so normal, and I know from my professional experience that this can be healing not only for the patients but also for the healthcare providers. I also wonder, if anyone else such as @rsinger22 , @baceman , @mouse355 has had this desire or has reconnected with their healthcare team in anyway and if so what were your experiences with that?
@alyric The story you have shared regarding you and your husband is quite remarkable! Thank you. I'm sure it will inspire others as they read it. Best wishes to you both! Teresa