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

December 21, 2018 my husband was admitted to the hospital with viral pneumonia, before this he was a vital active 70 year old man. He enjoyed golf, painting and playing his guitar and he did all our household and lawn maintenance. We were very active in our teenage grandchildrens lives and this kept us very busy. He has had CKD for about 20 years and with the help of some great nephrologist at Vanderbilt he has been mostly stable.
Sorry I digress, two days after entering the hospital he was coughing so hard one of his lungs collapsed and he had to be intubated and was put into the ICU. He did not tolerate the breathing tube and kept struggling and trying to pull it out so the sedated him heavily with fentanyl, propanol and Ativan he was sedated for five days and couldn’t be weaned from the intubation, every time they tried his blood pressure would shoot up to over 230/110. I elected to have a tracheostomy done to get the breathing tube taken out. He was taken off the heavy sedation and we were transferred to a critical pulmonary recovery hospital to wean him from the respirator and remove the trach. Their main goal was to his respiratory health with minor attention to physical rehab. During the coming out of the sedation, which took about a week to fully get free of the effects, he had hallucinations and delusional episodes that were so frightening to me but he only vaguely remembers them now. When he woke up so to speak he could barely lift his left arm and couldn’t lift his right arm at all. He was so weak he was not able to turn over or lift his head. He was able to wean from the respirator and have his trach removed and occupational and physical therapy at an inpatient critical rehab hospital, has given him back the use of his arms, legs and hands. He remains so weak being up an active about two hours at a time exhausts him and he lost 23 lbs and most of that was lean body mass or muscle. His appetite is not good and we have to do 4 or 5 smaller meals with oral supplement shakes, to keep him from losing more weight. He is doing home health for physical and occupational therapy. He is grieving his loss of independence and how much he has to depend on me for the smallest of things he took for granted, he cries easily the only time I’ve ever seen him cry was at his Moms funeral. He is able to be up doing exercises or eating about 2 to 21/2 hours before he needs to lay down. We have been given no nutritional advice, no advice on how to combat the debilitating weakness and the brain fog he is experiencing. I’ve searched the web and cobbled together some things that could help and I know would do no harm. I found a Post ICU Recovery Clinic ran by Vanderbilt and we have an appointment with them. Does anyone have any resources you could share with us? Soryy this is so long

Hi @polly08, I'm so glad that you found this group where you can meet others who know what you're going through, like @rosemarya and @muriel66 and caregivers @lupedelarosa12 and @patrassi

Polly, you asked about resources. I suggest you start with the blog posts on the Post Intensive Care Syndrome blog here: https://connect.mayoclinic.org/page/pics/
I particularly like the "Breaking It Down" series that @andreab wrote explaining PICS from prevention to recovery. Here are a couple of blogs to get you started:
> Breaking it Down: Post Intensive Care Syndrome and Recovery - Emotions https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-and-recovery-emotions/
> Breaking it Down: Post Intensive Care Syndrome and The Family https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-and-the-family/

I'm thrilled that Vanderbilt had a Post ICU Recovery Clinic and that you have an appointment soon. Don't forget to ask them about support for you, too. This must be all so overwhelming as you help your husband through recovery.

But let's get you some support now by connecting with others here. Imagine I've just poured you a cup of tea. Let's chat. What's your main pre-occupation or concern today?

@polly08
Hello, Polly,

My name is Muriel. I see that Colleen Young, Connect Director, indicated that you could seek support by being in touch with me. I certainly am willing to share the challenges that your husband and you experience. The outcomes he is physically and emotionally experiencing, and your great concern, certainly are troubling at this time. I hope that he and you can see the present as a point in time in recovery, and not the final point of recovery. Tough days take you both closer to better days.

As background for listening to you, here is part of my story:
When I unexpectedly went through severe septic shock after routine surgery at Mayo in March 2016, I was in a coma for six days and on a respirator in intensive care. My kidneys did not function, so I received dialysis. I had 22 serious diagnoses. One of the outcomes was the my entire body became de-conditioned. I lost all strength, to the point that I was unable to push the button to call the nurse. Once I was out of the coma, I was delusional and experienced nightmares. Throughout my long recovery, I cried many times for lengths of time.

Tonight my main point of contacting you is to say there is hope. You have connected with a knowledgable and compassionate community at Mayo Clinic, and at Vanderbilt. As soon as I am able, likely on Monday, Feb. 4, I will respond more directly to you. Feel free to share your thoughts and feelings. I will listen.

Muriel
@muriel66

Hi Muriel, than you so much for taking time from your day to reach out to me. I guess the most important thing I have to ask you, was there one important thing that stands out that was the greatest help to you? I am focusing right now on nutrition, relaxing and exercise and plenty of rest. We are talking through the month he spent in the hospital and I’m reliving the days we spent there, at first I didn’t want to go back to that time. It was like walking through my personal horror movie. He finally got through to me his need to understand what happened to him, for him he woke up in a Critical Pulmonary care Hospital with a trach in his throat, not able to move or speak. I have my doubts still if I’m doing the right thing. I guess I’m asking if you had this need to understand what happened to you? Thank you for any advice or insight you can share with me.

Polly, In 2009, I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context of time.
I as flown to Mayo Clinic and I have a vague recollection of being flown there. I spent 2 more weeks in hospital and for the first few days, I continued to be in and out of awareness.
Several weeks later, I asked my husband, who was with me the entire time, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. I cried as I learnd how much worry I had caused for my family, and he cried as he told me about it. It was very painful for him to relive it. I kept asking over and over to get the details straight in my mind, because my memory seemed all jumbled and I kept forgetting what he told me. I still have questions like, "When did I get the feeding tube?" We don't now, but it was there when I got to Mayo.
As time passes it will get easier to accept. It is not as big of a concern to me, anymore. The pain has eased, I don't cry when I talk about it, memory gaps are filling in with other things. I also found some peace of mind by reviewing the medical records that wre postd on patient portal.
I know that this must hard for you to explain over and over. You could try writing down some things that happened so that he can see it in writing, that might be helpful. Jot down things ,anything as it comes to mind thoughout, ie - the various doctors, the nurse with the big red glasses, the colors of the room, the view outside the window.....

Hi Muriel, than you so much for taking time from your day to reach out to me. I guess the most important thing I have to ask you, was there one important thing that stands out that was the greatest help to you? I am focusing right now on nutrition, relaxing and exercise and plenty of rest. We are talking through the month he spent in the hospital and I’m reliving the days we spent there, at first I didn’t want to go back to that time. It was like walking through my personal horror movie. He finally got through to me his need to understand what happened to him, for him he woke up in a Critical Pulmonary care Hospital with a trach in his throat, not able to move or speak. I have my doubts still if I’m doing the right thing. I guess I’m asking if you had this need to understand what happened to you? Thank you for any advice or insight you can share with me.

@polly08
Hi, Polly,
I am sorry that I did not respond yesterday, as I had planned. I am glad that I can do so today. 🙂

Because all of my body was affected by severe septic shock, there was a combination of factors that were of great help to me. For example, my nutrition was prescribed and monitored according to blood tests and other indicators while I was at Mayo.

To answer your question about the most important part of my recovery, I would say it was physical therapy, which was started immediately at Mayo and continued for the six weeks that I was there; plus for the month that I was at the nursing home; and during the six weeks that I received home-healthcare. I indicate physical therapy as significant because it not only made it possible for me to use my body, but also it raised my self-esteem and gave me hope. I eventually regained my physical independence.

At Mayo and the nursing home, I learned to how to turn in bed, to get out of bed, and eventually to walk with assistance. I found that the physical therapy offered by home-health care was the least helpful because it was based on the low expectations of the therapist. More helpful at home was having my husband set physical goals with me. Prior to severe septic shock, I could walk many miles at a time and hike partway up mountains.

My husband plotted a walking track for me in front of the house and identified the number of laps I would need to take in order to walk a mile. I started with the ability to walk one lap, with my husband at my side, but without assisting me. Over a length of time I eventually was able to walk a mile.

Today, almost three years later, I can walk without tiring. However, I will no longer hike partway up mountains. I can regain the physical ability to do so, but I cannot gain the energy. I tire more easily than I did before severe septic shock. In part this is because a year later I had a second surgery and again suffered septic shock. My heart was affected adversely. Even so, I am very well. I have regained my enjoyment of life and my sense of humor. I feel free. I am deeply thankful.

In response to the concern about telling your husband the details of the trauma, and your experience of reliving the suffering, I say this. I definitely needed to know the details of what happened to me. My husband, and our sons, waited to tell me until I asked questions. And, they did not tell me more than I asked to know. They let me take the lead because they did not want to overwhelm me. Each day I was dealing with so much in the moment that I could not handle knowing too much about the past. And today, I likely do not know all of the details.

Another major contributor to my recovery was the fact that I weekly saw a psychologist. Post Intensive Care Syndrome (PICS) affects a person in ways that can be shared with and understood by a professional counselor. If you are interested in having me share more about this, I will. Because my response to you is lengthy, I best not share more today!

I am confident that the compassionate care you provide to your husband is and will continue to be of assistance. A great length of time is required for recovery. May he and you be encouraged by knowing that others have plodded along in recovery and have reached new horizons. I am hopeful that his recovery will continue not only in obvious, but also in hidden ways. May each of you be able to get added rest.

Muriel
@muriel66

@andreab
I would be most grateful for their contact details. There is no support group in Townsville currently.
Many thanks.

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